qualitative research health and social care

Qualitative Research – a practical guide for health and social care researchers and practitioners

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Darshini Ayton, Monash University

Tess Tsindos, Monash University

Danielle Berkovic, Monash University

Last Update: 2024

ISBN 13: 9780645755404

Publisher: Monash University

Language: English

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Acknowledgement of Country
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Introduction to research
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Data analysis
Writing qualitative research
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This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research. Qualitative research designs are diverse and each design has a different focus that will inform the approach undertaken and the results that are generated. The aim is to move beyond the “what” of qualitative research to the “how”, by (1) outlining key qualitative research designs for health and social care research – descriptive, phenomenology, action research, case study, ethnography, and grounded theory; (2) a decision tool of how to select the appropriate design based on a guiding prompting question, the research question and available resources, time and expertise; (3) an overview of mixed methods research and qualitative research in evaluation studies; (4) a practical guide to data collection and analysis; (5) providing examples of qualitative research to illustrate the scope and opportunities; and (6) tips on communicating qualitative research.

About the Contributors

Associate Professor Darshini Ayton is the Deputy Head of the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a transdisciplinary implementation researcher with a focus on improving health and social care for older Australians and operates at the nexus of implementation science, health and social care policies, public health and consumer engagement. She has led qualitative research studies in hospitals, aged care, not-for-profit organisations and for government and utilises a range of data collection methods. Associate Professor Ayton established and is the director of the highly successful Qualitative Research Methods for Public Health short course which has been running since 2014.

Dr Tess Tsindos is a Research Fellow with the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a public health researcher and lecturer with strong qualitative and mixed methods research experience conducting research studies in hospital and community health settings, not-for-profit organisations and for government. Prior to working in academia, Dr Tsindos worked in community care for government and not-for-profit organisations for more than 25 years. Dr Tsindos has a strong evaluation background having conducted numerous evaluations for a range of health and social care organisations. Based on this experience she coordinated the Bachelor of Health Science/Public Health Evaluation unit and the Master of Public Health Evaluation unit and developed the Evaluating Public Health Programs short course in 2022. Dr Tsindos is the Unit Coordinator of the Master of Public Health Qualitative Research Methods Unit which was established in 2022.

Dr Danielle Berkovic is a Research Fellow in the School of Public Health and Preventive Medicine at Monash University in Melbourne, Australia. She is a public health and consumer-led researcher with strong qualitative and mixed-methods research experience focused on improving health services and clinical guidelines for people with arthritis and other musculoskeletal conditions. She has conducted qualitative research studies in hospitals and community health settings. Dr Berkovic currently provides qualitative input into Australia’s first Living Guideline for the pharmacological management of inflammatory arthritis. Dr Berkovic is passionate about incorporating qualitative research methods into traditionally clinical and quantitative spaces and enjoys teaching clinicians and up-and-coming researchers about the benefits of qualitative research.

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Qualitative studies are often used to research phenomena that are difficult to quantify numerically. 1,2 These may include concepts, feelings, opinions, interpretations and meanings, or why people behave in a certain way. Although qualitative research is often described in opposition to quantitative research, the approaches are complementary, and many researchers use mixed methods in their projects, combining the strengths of both approaches. 2 Many comprehensive texts exist on qualitative research methodology including those with a focus on healthcare related research. 2-4 Here we give a brief introduction to the rationale, methods and quality assessment of qualitative research.

https://doi.org/10.1136/dtb.2017.2.0457

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P van Royen 2 ,
1 Lecturer in Medical Sociology, Department of Social Medicine, University of Bristol, Bristol BS8 2PR, UK
2 Professor of General Practice, Department of General Practice, University of Antwerp, Universiteitsplein 1, 2610 Antwerp, Belgium
3 Professor of Quality in Health Care, Clinical Governance Research & Development Unit, Department of General Practice & Primary Health Care, University of Leicester, Leicester LE5 4PW, UK
Correspondence to:  Dr C Pope, Lecturer in Medical Sociology, Department of Social Medicine, University of Bristol, Bristol BS8 2PR, UK;  c.pope{at}bristol.ac.uk

There are no easy solutions to the problem of improving the quality of care. Research has shown how difficult it can be, but has failed to provide reliable and effective ways to change services and professional performance for the better. Much depends on the perspectives of users and the attitudes and behaviours of professionals in the context of their organisations and healthcare teams. Qualitative research offers a variety of methods for identifying what really matters to patients and carers, detecting obstacles to changing performance, and explaining why improvement does or does not occur. The use of such methods in future studies could lead to a better understanding of how to improve quality.

qualitative methods
qualitative research
quality of care

https://doi.org/10.1136/qhc.11.2.148

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New Qualitative Methodologies in Health and Social Care Research

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This edited volume brings together innovative contributions from a range of health and social care professionals and research scientists who are interested in introducing new approaches to qualitative research into the world of health and social care. A range of methodologies including discourse analysis, imagework, cut-up technique, minimalist passive interviewing technique and social action research are discussed along with their histories, methods and their applicability to practice. Illustrated by examples drawn from clinical and practice settings, the book also explores recent developments and their implications for, and impact on, delivery and good practice evaluation in health and social care.

The book encourages an in-depth appreciation of the concept of evidence - what it means, how it is arrived at and the consequences of it being applied, and:

enables health and social care professionals, academics and students to learn more about new qualitative methodologies
broadens understanding of notions of good practice
encourages new thinking about the application of methodologies to practice.

Chapter | 18 pages, introduction, chapter | 16 pages, discourse analysis, chapter | 20 pages, the turn to a narrative knowing of persons, chapter | 24 pages, hermeneutics and nursing research, descriptive phenomenology, from the porter's point of view, imagework method and potential applications in health, social sciences and social care research, chapter | 11 pages, postmodern literary poetics of experience, chapter | 12 pages, historiography, illness and the interpretation of fiction, chapter | 17 pages, methodology and practical application of the social action research model.

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Peer-reviewed

Research Article

Associations between sex work laws and sex workers’ health: A systematic review and meta-analysis of quantitative and qualitative studies

Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Methodology, Supervision, Writing – original draft

* E-mail: [email protected]

Affiliation Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, London, United Kingdom

Roles Conceptualization, Data curation, Formal analysis, Methodology, Writing – review & editing

Roles Data curation, Formal analysis, Writing – review & editing

Roles Methodology, Writing – review & editing

Affiliation Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, United States of America

Affiliation Department of Criminology, University of Leicester, Leicester, United Kingdom

Affiliation Bar Hostess Empowerment and Support Programme, Nairobi, Kenya

Affiliation University of Toronto, Toronto, Ontario, Canada

Lucy Platt,
Pippa Grenfell,
Rebecca Meiksin,
Jocelyn Elmes,
Susan G. Sherman,
Teela Sanders,
Peninah Mwangi,
Anna-Louise Crago

Published: December 11, 2018
https://doi.org/10.1371/journal.pmed.1002680
Reader Comments

Sex workers are at disproportionate risk of violence and sexual and emotional ill health, harms that have been linked to the criminalisation of sex work. We synthesised evidence on the extent to which sex work laws and policing practices affect sex workers’ safety, health, and access to services, and the pathways through which these effects occur.

Methods and findings

We searched bibliographic databases between 1 January 1990 and 9 May 2018 for qualitative and quantitative research involving sex workers of all genders and terms relating to legislation, police, and health. We operationalised categories of lawful and unlawful police repression of sex workers or their clients, including criminal and administrative penalties. We included quantitative studies that measured associations between policing and outcomes of violence, health, and access to services, and qualitative studies that explored related pathways. We conducted a meta-analysis to estimate the average effect of experiencing sexual/physical violence, HIV or sexually transmitted infections (STIs), and condomless sex, among individuals exposed to repressive policing compared to those unexposed. Qualitative studies were synthesised iteratively, inductively, and thematically. We reviewed 40 quantitative and 94 qualitative studies. Repressive policing of sex workers was associated with increased risk of sexual/physical violence from clients or other parties (odds ratio [OR] 2.99, 95% CI 1.96–4.57), HIV/STI (OR 1.87, 95% CI 1.60–2.19), and condomless sex (OR 1.42, 95% CI 1.03–1.94). The qualitative synthesis identified diverse forms of police violence and abuses of power, including arbitrary arrest, bribery and extortion, physical and sexual violence, failure to provide access to justice, and forced HIV testing. It showed that in contexts of criminalisation, the threat and enactment of police harassment and arrest of sex workers or their clients displaced sex workers into isolated work locations, disrupting peer support networks and service access, and limiting risk reduction opportunities. It discouraged sex workers from carrying condoms and exacerbated existing inequalities experienced by transgender, migrant, and drug-using sex workers. Evidence from decriminalised settings suggests that sex workers in these settings have greater negotiating power with clients and better access to justice. Quantitative findings were limited by high heterogeneity in the meta-analysis for some outcomes and insufficient data to conduct meta-analyses for others, as well as variable sample size and study quality. Few studies reported whether arrest was related to sex work or another offence, limiting our ability to assess the associations between sex work criminalisation and outcomes relative to other penalties or abuses of police power, and all studies were observational, prohibiting any causal inference. Few studies included trans- and cisgender male sex workers, and little evidence related to emotional health and access to healthcare beyond HIV/STI testing.

Conclusions

Together, the qualitative and quantitative evidence demonstrate the extensive harms associated with criminalisation of sex work, including laws and enforcement targeting the sale and purchase of sex, and activities relating to sex work organisation. There is an urgent need to reform sex-work-related laws and institutional practices so as to reduce harms and barriers to the realisation of health.

Author summary

Why was this study done.

To our knowledge there has been no evidence synthesis of qualitative and quantitative literature examining the impacts of criminalisation on sex workers’ safety and health, or the pathways that realise these effects.
This evidence is critical to informing evidenced-based policy-making, and timely given the growing interest in models of decriminalisation of sex work or criminalising the purchase of sex (the latter recently introduced in Canada, France, Northern Ireland, Republic of Ireland, and Serbia).

What did the researchers do and find?

We undertook a mixed-methods review comprising meta-analyses and qualitative synthesis to measure the magnitude of associations, and related pathways, between criminalisation and sex workers’ experience of violence, sexual (including HIV and sexually transmitted infections [STIs]) and emotional health, and access to health and social care services.
We searched bibliographic databases for qualitative and quantitative research, categorising lawful and unlawful police repression, including criminal and administrative penalties within different legislative models.
Meta-analyses suggest that on average repressive policing practices of sex workers were associated with increased risk of sexual/physical violence from clients or other partners across 9 studies and 5,204 participants.
Sex workers who had been exposed to repressive policing practices were on average at increased risk of infection with HIV/STI compared to those who had not, across 12,506 participants from 11 studies. Repressive policing of sex workers was associated with increased risk of condomless sex across 9,447 participants from 4 studies.
The qualitative synthesis showed that in contexts of any criminalisation, repressive policing of sex workers, their clients, and/or sex work venues disrupted sex workers’ work environments, support networks, safety and risk reduction strategies, and access to health services and justice. It demonstrated how policing within all criminalisation and regulation frameworks exacerbated existing marginalisation, and how sex workers’ relationships with police, access to justice, and negotiating powers with clients have improved in decriminalised contexts.

What do these findings mean?

The quantitative evidence clearly shows the association between repressive policing within frameworks of full or partial sex work criminalisation—including the criminalisation of clients and the organisation of sex work—and adverse health outcomes.
Qualitative evidence demonstrates how repressive policing of sex workers, their clients, and/or sex work venues deprioritises sex workers’ safety, health, and rights and hinders access to due process of law. The removal of criminal and administrative sanctions for sex work is needed to improve sex workers’ health and access to services and justice.
More research is needed in order to document how criminalisation and decriminalisation interact with other structural factors, policies, and realities (e.g., poverty, housing, drugs, and immigration) in different contexts, to inform appropriate interventions and advocacy alongside legal reform.

Citation: Platt L, Grenfell P, Meiksin R, Elmes J, Sherman SG, Sanders T, et al. (2018) Associations between sex work laws and sex workers’ health: A systematic review and meta-analysis of quantitative and qualitative studies. PLoS Med 15(12): e1002680. https://doi.org/10.1371/journal.pmed.1002680

Academic Editor: Alexander C. Tsai, Massachusetts General Hospital, UNITED STATES

Received: February 5, 2018; Accepted: September 20, 2018; Published: December 11, 2018

Copyright: © 2018 Platt et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: The data underlying the quantitative synthesis are provided as Supporting Information. The data underlying the qualitative synthesis exist within the underlying publications, which are referenced in the paper.

Funding: Funding for this study was provided by Open Society Foundations (OR2015-24978) and the UK Department for International Development (DFID) as part of STRIVE, a 6-year programme of research and action devoted to tackling the structural drivers of HIV ( http://STRIVE.lshtm.ac.uk/ ). No funding bodies had any role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exists.

Abbreviations: cis, cisgender; OR, odds ratio; STI, sexually transmitted infection; trans, transgender

Introduction

Sex workers can face multiple interdependent health risks [ 1 , 2 ]. Between 32% and 55% of cisgender (cis) women working mostly in street-based sex work report experience of workplace violence in the past year [ 3 ]. Across diverse settings, both cis and transgender (trans) women and men in sex work are at increased risk of experiencing violence and homicide [ 4 – 6 ], HIV infection [ 7 – 9 ], chlamydia and gonorrhoea [ 10 , 11 ], and poorer mental health than their non-sex-working counterparts [ 12 ]. Yet there is considerable variation within sex-working populations [ 13 , 14 ]. The epidemiological context as well as social and structural factors and power relations reproduce inequalities within sex-working populations [ 2 , 3 , 8 , 9 ]. For example, cis women working in street-based sex work are more vulnerable to all these outcomes than those working in off-street settings [ 15 , 16 ]. Many vulnerabilities faced by sex workers are multiplicative, closely linked to poverty, substance use, disability, immigration, sexism, racism, transphobia, and homophobia [ 17 ].

Qualitative literature demonstrates how social policies and structural factors shape the health and welfare of sex workers. The ‘risk environment’ concept, developed to understand drug-related harms [ 18 ] and adapted to HIV and violence experienced by sex workers [ 19 , 20 ], examines different types (physical, social, economic, and political) and levels of environmental influence (micro and macro), in line with broader efforts to address structural determinants of health [ 21 ]. This concept has been used to demonstrate how policing, stigma, and inequalities interplay to shape sex workers’ vulnerability to HIV [ 22 ], violence [ 23 ], and lack of access to healthcare [ 24 ] and justice [ 25 , 26 ], and the potential for sex-worker-led interventions to challenge these harms [ 27 ]. Epidemiological evidence documents the associations between macro-structural factors (laws, housing and economic insecurity, migration, education, and stigma) and work environment and community factors (policing, work setting and conditions, autonomy, and access to health and peer-led services) and sex workers’ risk of violence and HIV transmission [ 2 , 3 ]. Criminalisation and repressive public health approaches to sex work (e.g., mandatory registration and HIV/sexually transmitted infection [STI] testing) have been shown to hinder the prevention of HIV, where the focus of interventions and research has been directed [ 28 – 30 ]. Conversely, mathematical modelling has estimated that decriminalisation of sex work could halve the incidence of HIV among sex workers and their clients over a 10-year period [ 2 ], and evidence from New Zealand indicates that sex workers in decriminalised settings report improved workplace safety, health and social care access, and emotional health [ 31 , 32 ].

Broadly, there are 5 legislative models used to manage, control, or regulate sex work ( Table 1 ) [ 33 ]. Full criminalisation prohibits all organisational aspects of sex work and selling and buying sex. Partial criminalisation is where some aspects of sex work are penalised (e.g., soliciting sex in public for sex workers and/or clients, advertising services, collective working, or involvement of third parties). In 1999, Sweden criminalised the purchase, but not the sale, of sex, and various other countries have followed [ 34 ]. This ‘criminalisation of clients’ model typically retains laws against ‘brothel-keeping’, which may in practice also target sex workers working together. Regulatory models make the sale of sex legal in certain settings (e.g., in licensed brothels or managed zones) or under certain conditions (e.g., mandatory registration or HIV/STI testing) but illegal in other settings or for individuals who do not meet registration requirements or eligibility criteria (e.g., migrants, cis men and trans sex workers, or people living with HIV) [ 35 ]. Full decriminalisation, implemented in New Zealand in 2003, removes criminal penalties for adult sex work, emphasises enforcing criminal laws prohibiting violence and coercion, and regulates the sex industry through occupational health and safety standards [ 36 ]. All models criminalise coerced sex work and the involvement of minors, and almost all models—including decriminalisation in New Zealand—prohibit migrants without permanent residency from working legally or in a regulated environment. In practice the implementation of these models through bylaws and enforcement practices is complex, and varies between and within countries and even locally within cities [ 37 , 38 ].

PPT PowerPoint slide
PNG larger image
TIFF original image

https://doi.org/10.1371/journal.pmed.1002680.t001

The debate around sex work policy and legislation is highly polarised. Some argue that all sex work is itself gendered violence and should be repressed—a notion that underpins the criminalisation of sex workers’ clients [ 39 , 40 ]. Others argue that this fails to recognise the diversity of experience and identity in the sex industry and the possibility that financial reimbursement for sex between adults can be consensual [ 41 ]. At a time of increasing political interest in legislative reform [ 42 – 45 ], there is a critical need to bring together this evidence to inform policies that protect sex workers’ safety, health, well-being, and broader rights. We conducted a systematic review to synthesise evidence of the extent to which sex work laws and their enforcement affect sex workers’ safety, health and access to services, and the processes and pathways through which these effects occur, including in interaction with other macro-structural, community, and work environment factors.

Data extraction and quality assessment

Following a protocol with pre-specified search terms, we searched MEDLINE, CINAHL, PsychINFO, Web of Science, and Global Health for public health and social science literature on studies that combined 3 search domains: (1) sex work, AND (2) legislation OR policing, AND (3) health (physical or emotional, including violence/safety) OR access to services (including health, risk reduction, and social care/support). The complete search terms and review protocol are attached ( S1 Text ). Meta-analyses were not pre-specified, since they were subject to identifying sufficiently homogenous studies in relation to outcomes and definition of criminalisation.

Three authors screened the sources for inclusion, discussing any uncertainties within the team; a second person re-reviewed relevant sources when necessary. Quantitative data were extracted and analysed by LP and JE, and qualitative data synthesised by PG and RM. For qualitative and quantitative studies, we defined quality-related criteria adapted from the Critical Appraisal Skills Programme (CASP) [ 46 ] that papers had to fulfil in order to qualify for inclusion: methods and ethics processes described, appropriate study population clearly defined, and conclusions supported by study findings. Quantitative studies were further assessed according to appropriateness of study design, data collection methods, and analyses, using assessment approaches adapted from the Newcastle–Ottawa scale and CASP [ 46 , 47 ]. A full copy of the quality assessment process for the quantitative studies is available ( S1 Table ). For qualitative evidence, confidence in review findings was assessed according to CERQual guidance, taking account of methodological limitations, coherence, adequacy of data, and relevance of included studies ( S2 Text ) [ 48 ]. Methodological limitations were assessed using CASP guidelines for qualitative evidence.

Definitions

We included studies with sex workers of all genders who currently or have ever exchanged sexual services for money, drugs, or other material goods. We included research on all models of sex work legislation and used the following definition of the criminalisation of sex work: ‘a model of intervention in which the criminal law is used to manage, control, repress, prohibit or otherwise influence the growth, instance or expression of prostitution’ [ 33 ]. We also included the use of non-criminal penalties to target sex workers, such as fines and displacement orders, including those that do not formally relate to sex work. Within the broad legislative models ( Table 1 ), sex work legislation and policing was operationalised into 8 different categories of police exposure: (1) police repression on an environment in which sex work takes place (workplace raids, zoning restrictions, and displacement from usual working areas), (2) recent (within last year) arrest or prison, (3) past arrest or prison, (4) confiscation of condoms or needles or syringes, (5) extortion (giving police information, money, or goods to avoid arrest), (6) sexual or physical violence from police (negotiated or forced), (7) fear of police repression, and (8) registration as a sex worker at a municipal health authority. Where clear from included papers, we recorded data on gender using the terms ‘cis’ and ‘trans’ to refer to people who do and do not identify themselves with the gender they were assigned at birth, respectively. Conscious of cultural diversity in gender identities, we use the term ‘transfeminine’ to describe feminine-presenting trans populations that do not necessarily describe themselves as female/women [ 49 ]. We did not identify any papers that discussed the experiences of people who identify their gender as trans male/masculine or non-binary.

Inclusion criteria

We included quantitative, qualitative, and mixed-methods studies published in English, Russian, or Spanish, and included data specific to the experiences of sex workers. We included papers that measured quantitative associations between criminalisation or decriminalisation of sex work, or repressive policing practices within these contexts, and the following outcomes: threatened or enacted violence, STIs, HIV, hepatitis B/C, overdose, stress, anxiety, depression, risk practices/management (e.g., working with others, reporting violence, condom use, sharing needles/syringes), and access to health/social care services (HIV/STI/hepatitis prevention, testing, and treatment; contraception; abortion; opioid substitution therapy and other drug/alcohol services; mental health and counselling; primary and secondary care; psychosocial support services; housing; and social security). We also included studies that reported qualitative data on the relationships between experiences of criminalisation or decriminalisation and policing and sex workers’ experiences of violence, safety, health, risk management, and/or accessing health or social care services, from the perspectives of sex workers themselves.

Data synthesis

We synthesised estimates that adjusted for confounders to assess overall risk of experience of physical or sexual violence, HIV/STI, and condomless sex, stratified by the categories of repressive police activities described above. Where multiple policing practice exposures were presented in the same study, we selected independent estimates in an overall pooled estimate prioritising recent experience of arrest/prison and the most commonly occurring outcomes. Studies including sex workers of different genders were pooled together. We applied random effects models using the DerSimonian and Laird method for all analyses, allowing for heterogeneity between studies and converting all effect estimates into odds ratios (ORs) [ 50 ]. We examined heterogeneity with the I 2 statistic. We conducted sub-group analyses to describe differences in experience of violence and condom use by partner type (client versus intimate partner/other) and by type of violence (physical versus sexual or sexual/physical combined). We conducted sensitivity analyses to look at overall associations between policing and our specified outcomes, excluding or pooling studies that did not adjust for confounders or reported only STI outcomes (self-reported and biological) or composite HIV/STI, and altering the priority choice of police exposure (from recent arrest/prison to other). We conducted a narrative synthesis of outcomes that were too heterogeneous to pool, including access to services (both mandatory and voluntary uptake of services), harms related to drug use, and emotional health. Studies that measured associations with registration at the municipal health department were also synthesised separately, since this policy was less comparable with all others that involved direct police action. All analyses were conducted using the metafor package in R version 3.4.1 and RStudio version 1.0.143 [ 51 ].

For qualitative studies, data were synthesised inductively, iteratively, and thematically. From the body of eligible papers we first focused on the ‘data-rich’ papers that contributed substantive or moderate data and analyses relevant to our research questions. Among the body of papers that had a limited focus on the topic, we then purposively sampled studies that reported on an under-represented population, setting, legislative model, or health issue of interest in this review [ 52 ] until no new themes emerged (thematic saturation). For the data-rich papers, we reviewed and wrote summaries of the results and discussion sections, inductively and iteratively drawing out author- and reviewer-identified themes and sub-themes. We then linked sub-themes and themes to 4 core categories, informed by concepts of structural, symbolic, and everyday violence that argue that mistreatment, stigma, exclusion, and ill health often result from intersecting inequalities that become institutionalised and normalised through policies, practices, and social norms [ 53 ]. We paid careful attention to the different levels and forms of environmental influence within risk environments [ 18 ]. Finally, we reviewed the less data-rich papers (relative to our research questions) against these emerging categories until they required no further refining. We summarise the core categories narratively with illustrative quotes ( Box 1 ), drawing out findings that help to unpack the quantitative associations and their causal pathways. Within each category, we pay close attention to patterns by legislative model.

From 9,148 papers identified, 134 studies met the inclusion criteria, resulting in 40 papers included in the quantitative synthesis, of which 20 were included in the meta-analysis and 20 in the narrative synthesis. A total of 94 met the inclusion criteria for the qualitative synthesis, of which 46 were included in the thematic analysis, 3 were excluded following quality assessment, and 45 were excluded when thematic saturation had been reached ( Fig 1 ).

SWs, sex workers.

https://doi.org/10.1371/journal.pmed.1002680.g001

Quantitative synthesis

Included quantitative studies..

We identified 40 studies that measured the association between an aspect of police repression of sex workers or their clients and our outcomes of interest. The majority of the studies were cross-sectional (28) or serial cross-sectional (2); there were 9 prospective cohorts [ 27 , 54 – 61 ] and baseline data from 1 randomised control trial [ 62 ]. Studies were conducted in a variety of countries representing some but not all of the main sex work legislative models ( Table 1 ). Partial criminalisation was represented in 10 studies in Canada, 6 studies in India, 3 studies in Russian Federation, 2 studies in Argentina, and 1 each in Côte D’Ivoire, Spain and UK. Full criminalisation was represented in 3 studies in Uganda, 2 studies in China, and 1 each in Iran, Rwanda, and South Korea. Regulation models were represented by 8 studies in Mexico. No quantitative studies examined the effects of the criminalisation of sex purchase in isolation, or the effects of decriminalisation. Outcomes reported included the following: sexual or physical violence ( n = 10) [ 57 – 59 , 63 – 69 ], HIV and/or STI prevalence ( n = 15) [ 54 , 60 , 63 , 67 , 70 – 78 ], condom use ( n = 5) [ 71 , 74 , 78 – 82 ], access to services ( n = 8) [ 56 , 61 , 63 , 71 , 80 , 83 – 85 ], aspects of drug use ( n = 6) [ 27 , 46 , 62 , 63 , 66 , 86 , 87 ], and emotional ill health ( n = 3) [ 55 , 60 , 88 ]. Two studies focused on the association between criminalisation and social and criminal justice factors including further extortion by the police or history of arrest [ 63 ], any contact with the criminal justice system, being a migrant, and unstable housing [ 60 ]. The majority of studies focused on cis women, with the exception of 6 that included trans women ( n = 5) and cis men ( n = 1) in Canada and Argentina [ 27 , 55 , 56 , 60 , 61 , 70 ]. Location of sex work was diverse across street and off-street settings. All studies reported an association between lawful or unlawful repressive police actions towards sex workers and outcomes, of which 21 adjusted for confounders. We synthesised 4 studies that reported an effect estimate associated with a mandatory registration separately [ 79 , 81 , 89 , 90 ] but considered lawful and unlawful repressive police activities within the regulatory system as part of the pooled analysis [ 63 , 72 , 91 ]. Three studies presented effect estimates associated with a policy change, STIs, and rushing negotiation with clients, and were also considered separately [ 57 , 77 , 92 ]. Twenty studies reported on outcomes relating to HIV/STI prevalence, violence, and condom use, on which our primary meta-analyses are based. Characteristics of all studies are summarised in Table 2 .

https://doi.org/10.1371/journal.pmed.1002680.t002

HIV and STI outcomes.

Meta-analysis of 12 independent multivariable estimates showed that any type of repressive police practice was associated with twice the odds of HIV/STI (12,506 participants, OR 1.87, 95% CI 1.60–2.19), with little heterogeneity between studies ( I 2 = 0.0%, 95% CI 0.0%–0.0%, p = 0.99). Sub-group analysis suggested that people who had their needles/syringes or condoms confiscated had higher odds of HIV/STIs than those who did not (2,924 participants, OR 2.44, 95% CI 1.76–3.37, I 2 = 0.0%, 95% CI 0.0%–0.0%, p = 0.99). Sex workers who had experienced sexual or physical violence from police had higher odds of HIV/STI compared to those who had not (1,827 participants, OR 2.27 95% CI 1.67–3.08, I 2 = 0.0%, 95% CI 0.0%–98.6%, p = 0.79) ( Fig 2 ).

RE, random effects; STI, sexually transmitted infection.

https://doi.org/10.1371/journal.pmed.1002680.g002

The overall effect estimate of repressive policing actions on HIV/STI outcomes was maintained across sensitivity analyses including those focusing on unadjusted estimates (OR 1.85, 95% CI 1.49–2.30, I 2 = 14.0%, 95% CI 0.0%–81.1%, p = 0.32) ( S1 Fig ), those focusing on HIV outcomes only (OR 1.88, 95% CI 1.54–2.28, I 2 = 0.0%, 95% CI 0.0%–0.0%, p = 0.98), and those excluding self-reported STI symptoms (OR 1.91, 95% CI 1.58–2.31, I 2 = 0.0%, 95% CI 0.0%–0.0%, p = 0.99) ( S4 Fig ).

We pooled data from 9 studies that measured the association between repressive policing activities and experience of physical or sexual violence against sex workers by a range of perpetrators, including clients, intimate (sex) partners, and police. Random effects meta-analysis of 9 independent multivariable estimates showed that, overall, repressive policing was associated with substantially higher odds of any kind of violence (5,204 participants, OR 2.99, 95% CI 1.96–4.57), but with high heterogeneity ( I 2 = 83.1%, 95% CI 65.3%–96.0%, p < 0.001). Sub-group analysis suggested that those who had their needles/syringes or condoms confiscated had higher odds of violence than those who did not (1,696 participants, OR 4.67, 95% CI 1.32–16.54, I 2 = 93.9%, 95% CI 76.2%–99.8%, p < 0.01) ( Fig 3 ).

Shannon, 2009 refers to [ 58 ]. RE, random effects.

https://doi.org/10.1371/journal.pmed.1002680.g003

This overall association between police repression and violence increased slightly, but was still associated with substantially higher odds of violence, when all unadjusted estimates were pooled from 6 studies (OR 3.15, 95% CI 1.99–4.99, I 2 = 78.7%, 95% CI 52.5%–97.4%, p < 0.001) ( S2 Fig ). Odds of experiencing physical or sexual violence by other people (defined as anyone other than paying clients, including the police) was higher for those who had experienced any type of repressive police activity compared to those who had not (OR 3.72, 95% CI 1.74–7.95, I 2 = 84.1%, 95% CI 53.5%–99.0%, p < 0.001). Similarly, physical or sexual violence from clients was higher among those who had been exposed to repressive police activity compared to those who had not (OR 2.71, 95% CI 1.69–4.36, I 2 = 80.4%, 95% CI 45.5%–96.3%, p < 0.001) ( S4 Fig ).

Condom use.

Five studies measured the association between repressive policing activities and condom use with both paying and non-paying partners. Meta-analysis of 4 independent multivariable estimates (9,447 participants) suggested that on average these practices were associated with increased odds of not using a condom (OR 1.42, 95% CI 1.03–1.94), with moderate heterogeneity across the studies ( I 2 = 63.34%, 95% CI 0.0%–98.2%, p = 0.04) ( Fig 4 ).

RE, random effects.

https://doi.org/10.1371/journal.pmed.1002680.g004

The overall association between repressive policing activities and condom use increased when pooling unadjusted estimates from 2 studies (OR 1.76, 95% CI 1.30–2.38, I 2 = 0.0%, 95% CI 0.0%–0.98%, p = 0.46) ( S3 Fig ). Sub-group analysis suggested that the odds of condomless sex with clients was higher following policing exposure (OR 1.42, 95% CI 1.03–1.94, I 2 = 63.3%, 95% CI 0.0%–98.2%, p = 0.04) or when additional money was offered (OR 1.54, 95% CI 1.10–2.15, I 2 = 66.7%, 0.0%–97.8%, p = 0.03). There was no difference in the odds of condomless sex with non-paying partners after police exposure (OR 1.0, 95% CI 0.80–1.24, I 2 = 0.0%, 95% CI 0.0%–17.7, p = 0.97) ( S4 Fig ).

Access to services and mandatory testing.

Five studies looked at the association between repressive policing activities and access to health and social care services. One study in India found that arrest in the last year was associated with increased odds of attendance at an STI clinic (OR 1.74, 95% CI 1.02–2.98, p = 0.04) [ 71 ]. Confiscation of needles/syringes in Mexico by the police was associated with increased odds of having an HIV test among sex workers who inject drugs (OR 1.49, 95% CI 1.09–2.05, p- value not reported) [ 63 ]. In Canada, fear of police and police harassment, including arrests, was associated with avoiding healthcare services among street-based cis women [ 85 ] and cis and trans women [ 61 ]. Geospatial analyses among the same population showed that a higher density of police enforcement practices (including displacement, legal restrictions of sex work areas, and police harassment) was associated with disrupted HIV treatment [ 56 ]. In Uganda, rushed negotiations with clients due to police presence was associated with less frequent dual contraceptive use (OR 0.65, 95% CI 0.42–1.00, p = 0.05) [ 83 ]. In a study in China, where HIV testing is mandatory following detention, history of arrest was associated with increased odds of having an HIV test or taking up HIV prevention interventions, but fear of arrest was associated with decreased odds of both HIV testing (OR 0.78, 95% CI 0.55–1.12, p = 0.18) and accessing prevention interventions (OR 0.39, 95% CI 0.22–0.68, p < 0.001) [ 80 ].

Emotional ill health.

Three studies looked at indicators of emotional ill health. In India, cis female sex workers mostly working on the street who had been arrested had increased odds of major depression (defined through Patient Health Questionnaire–2) (OR 1.6, 95% CI 1.1–2.3, p = 0.05) compared to those who had not been arrested [ 88 ]. In Canada, recent incarceration was associated with poor emotional health outcomes among both cis and trans female sex workers in a univariable analysis (OR 1.55, 95% CI 1.12–2.14, p < 0.10) [ 60 ]. Among the same population, individuals who reported that the police had affected where they worked had increased work stress compared to those who did not report this [ 55 ].

Drug and alcohol use.

Five studies examined the association between repressive policing practices and drug use including injecting drug use [ 60 , 66 , 86 , 87 ], the use of non-prescription opioids [ 27 ], and excessive alcohol drinking [ 60 , 66 ]. All of these studies showed a positive association between exposure to repressive policing practices and drug/alcohol use. One study among cis female sex workers in Mexico who inject drugs found a positive association between police confiscation of needles/syringes and injecting in public places (linked to increased risk of skin and soft tissue injuries but reduced risk of overdose) (OR 1.6, 95% CI 1.1–2.4, p- value not reported), as well as injecting in the groin area (linked to increased risk of overdose) (OR 1.9, 95% CI 1.2–2.9, p- value not reported), but reduced odds of injecting with clients (potentially linked to sharing needles/syringes but reduced risk of overdose) (OR 0.64, 95% CI 0.44–0.94, p- value not reported) [ 63 ]. Another study with the same population found that confiscation of needles/syringes was associated with lower safe injection self-efficacy at 8 months (−0.51, SE 0.25, p = 0.04) [ 62 ]. Recent history of incarceration was associated with use of crystal methamphetamine among cis female sex workers in Iran [ 86 ].

Registration at a municipal health service.

Four studies reported associations between mandatory registration at a city health service in Tijuana, Mexico and health outcomes [ 79 , 81 , 89 , 90 ]. One study suggested that registered sex workers had reduced odds of working in a sex work venue with high prevalence of HIV or syphilis and testing positive for HIV or an STI (syphilis, gonorrhoea, or chlamydia) univariably. These associations became insignificant after adjusting for injecting risk behaviours, age, and time in sex work [ 79 ]. Of note, sex workers who test positive for HIV in this system have their registration revoked, and sex workers already living with HIV cannot work in the regulated sector; therefore, sex workers who know or suspect they are living with HIV are unlikely to register. Registered sex workers had reduced odds of ever injecting drugs and higher odds of being tested for HIV [ 81 ]. A final study suggested that lack of registration was associated with increased odds of unprotected sex (OR 2.1, 95% CI 1.2–3.5, p- value not reported) [ 90 ].

Evaluation of sex work policies.

Two studies in Canada evaluated a new policing guideline that prioritised enforcement of laws against clients and third parties over arrest of sex workers introduced in Vancouver in 2013. These studies found that there was no decrease in physical and sexual violence (OR 1.09, 95% CI 0.59–2.04, p = 0.78) among participants surveyed after 2013 compared to those surveyed before, but there was increased report of rushed negotiations with clients due to police presence (OR 1.73, 95% CI 1.03–2.90, p- value not reported) [ 57 , 92 ]. The introduction of an anti-trafficking policy in South Korea, accompanied by brothel closures, in 2010 was associated with a decrease in prevalence of gonorrhoea and antibodies to Treponema pallidum (indicating current or past infection), but also changes in the demographic profile of sex workers. Sex workers were younger in surveys conducted after the act compared to before, which may contribute to the lower prevalence of infection, although sex workers reported receiving more clients [ 77 ].

Qualitative synthesis

Included qualitative studies..

From the 94 eligible papers including qualitative data, we generated 4 core analytical categories over 37 unique analyses (papers) in different legislative frameworks and geographical settings, refining these through the inclusion of a further 9 purposively sampled papers ( S3 Text ). Studies were undertaken in a range of legislative models: Full criminalisation models were represented in 3 papers in the US; 2 papers each in Cambodia, Kenya, Serbia, South Africa, and Sri Lanka; and 1 paper each in Australia, China, Nepal, Pakistan, Uganda, and Zimbabwe. Partial criminalisation models were represented in analyses from 5 papers in Canada and 1 paper each in Hong Kong, India, Nigeria, Thailand, and the UK. Five papers focused on Canada following the introduction of criminalisation of clients, and 1 on Sweden, where that model is in place. Regulatory models—which criminalise those non-compliant with regulations including tolerance zones, regulated venues, and/or mandatory registration at a health care facility—were represented by 2 papers each from Australia, Guatemala, Mexico, and the US and 1 from Turkey. Four papers related to New Zealand, where sex work has been decriminalised. In total, interviews with 2,199 sex workers were analysed, representing a range of sex work locations (including street settings, truck stops, brothels, massage parlours, bars, night clubs, hotels, lodges, and homes) and means of meeting clients (including organised in person, via phone or online, independently, and via third parties). Most studies focused on cis women exclusively ( n = 25), with a minority including sub-samples of trans women or transfeminine people ( n = 18) or cis men ( n = 9). Just 2 papers focused exclusively on the experiences of trans sex workers, and 1 on male sex workers. Ten studies included interviews with other actors associated with sex work, including clients, venue managers/owners, police, and outreach workers, but our analyses focused on data from sex workers themselves. Characteristics of included studies (data-rich and purposively sampled) [ 22 , 26 , 34 – 36 , 49 , 93 – 132 ] are summarised in Table 3 , indicating which papers were purposively selected. A list of the other papers that were identified but not included is available ( S3 Text ).

https://doi.org/10.1371/journal.pmed.1002680.t003

Core analytical categories identified include disrupted workspaces and safety strategies; institutionalised violence, coercion, and extortion, and restricted access to justice; reproduction of multiple stigmas and inequalities; and restricted access to health and social care and support ( S4 Text ). Illustrative quotes from the core categories are summarised in Box 1 .

Core category 1: Disrupted workspaces and safety strategies.

In contexts of full or partial criminalisation, laws against soliciting or communication in public places for the purpose of prostitution—and feared or actual arrest—compromised street-based sex workers’ safety by rushing or displacing client screening and negotiations to secluded places, resulting in greater vulnerability to violence and theft by clients and others (Quote 1) [ 22 , 98 , 121 , 122 , 125 , 130 ]. For sex workers operating indoors, these laws impeded direct negotiations with clients and communication between peers about safety and sexual health [ 121 ]. This pattern persisted in contexts where clients were criminalised. Since it was in clients’ and sex workers’ mutual interest to avoid police detection, and because increased police presence and reduced number of clients led to the need to work longer hours [ 34 , 114 ], sex workers limited, rushed, or forewent usual client screening and negotiation, and were displaced to more isolated areas, increasing their exposure to violence and sexual health risks (Quotes 2, 3, 4a, and 4b) [ 34 , 114 ]. In Canada, cis and trans female sex workers continued to be displaced by police in areas undergoing gentrification, and, even when they were not targeted, some still experienced police presence as harassment [ 26 , 114 ]. Across diverse contexts, experience of possession of condoms being used as evidence of sex work, and experience of police raids where condoms had been confiscated, led to sex workers not carrying, using, or accessing condoms consistently [ 93 , 98 , 106 , 109 ] and venues restricting or not providing them [ 93 , 98 , 109 , 118 ]. In South Australia, sex workers attributed the latter to increased raids, closures, and the recent arrest of a venue owner [ 98 ].

Laws against brothel-keeping and bawdy houses left sex workers in the UK [ 123 ] and Canada [ 102 , 121 ] having to choose between working safely with other sex workers and/or third parties (e.g., security guards and drivers) and avoiding arrest by working in isolation (Quote 5), and deterred venue managers from providing sexual health training and supplies [ 93 , 121 ]. A lack of legal protection left sex workers vulnerable to exploitation by venue managers who could restrict access to information on their working and legal rights [ 121 , 123 ].

Anti-trafficking policies in Cambodia and attempts to ‘eliminate’ sex work in China resulted in police crackdowns on brothels, which displaced sex workers to unfamiliar and sometimes isolated locations (e.g., the street, bars, massage parlours, and private accommodations) where, working alone, they had less protection and control over negotiations with clients, lacked peer support to establish collective norms on condom use (Quote 6a and 6b), and were more vulnerable to sexual and other violence both from police and perpetrators posing as clients [ 110 , 117 , 118 ]. In Guatemala, some venue managers warned sex workers about raids, but, in common with experiences in Sri Lanka [ 120 ], others encouraged them to provide officers free sexual services to avoid their prosecution [ 132 ]. In India, some brothel owners paid police to avoid raids, or allowed pre-selected sex workers to be arrested [ 99 ]. Police harassment, raids [ 35 , 110 , 120 ], undercover operations, entrapment, and pressure to act as informants [ 97 , 128 ] generated fear, anxiety, and stress, with media sometimes publicising sex workers’ faces during raids [ 120 ].

Conversely, where certain indoor work places were informally approved by police in a wider landscape of criminalisation, as occurred in low-barrier housing for women in Canada, the removed threat of criminal penalties fostered venue-level safety strategies, in which sex workers could refuse unprotected sex or call the police in the event of a client becoming violent (Quote 7) [ 113 ]. Similarly, in the context of decriminalisation in New Zealand, cis female sex workers working on the street reported greater police presence contributing to their protection as well as increased time for screening clients (Quotes 8 and 9) [ 36 , 94 – 96 ]. Sex workers across sectors reported being able to negotiate services more directly and refuse clients [ 36 ]. Police became more focused on sharing information with women about violent incidents or individuals, and when their presence was off-putting to clients, women could request that they left [ 96 ]. Sex workers working outdoors no longer needed to move to isolated areas [ 94 ], although they continued to experience verbal and physical abuse by passers-by [ 95 ]. Although sex worker organisations objected to mandatory condom use within this model, some sex workers felt that it helped them insist on condom use [ 36 ].

In contexts of regulation in Australia, Mexico, and the US, venue-level systems such as alarms, fixed prices, intercoms, and condom use [ 100 , 124 ], as well as being able to work in close proximity with other sex workers and third parties [ 35 , 100 , 101 , 124 ], improved control and sense of safety for those able to work in regulated venues. Yet, in the US, some women criticised such systems as a veiled means of surveillance and as protecting management and clients’ interests above their own safety [ 100 ]. Across these settings, those unable to conceal venue-prohibited substance use were excluded from these premises and left as the authors note with ‘no choice but to work on the streets’ [ 124 ] or in the minority of venues where management overlooked these regulations [ 35 , 100 , 101 ]. In Canada, the cost of business licenses and the ineligibility of those with criminal records restricted access to and mobility between regulated venues [ 93 , 121 ]. In Mexico, only well-networked, resident, HIV-negative, cis female sex workers gained access to tolerance zones and regulated venues, which offered fewer physical risks than unregulated indoor and outdoor settings but were often overcrowded, making income less stable [ 35 , 101 ]. In Australia, Guatemala, and Mexico, the ineligibility of minors to work in regulated venues meant that they had to work on the street [ 35 , 124 , 126 ]. In Australia and Sri Lanka, sex workers operating in unregulated venues had less control over negotiations with clients, and some owners encouraged women to provide sex without a condom [ 124 , 120 ].

Core category 2: Institutionalised violence, coercion, and extortion, and restricted access to justice.

Studies showed that policing practices in contexts of criminalisation and regulation institutionalised violence against sex workers, both directly through police inflicting physical or sexual violence or demanding fines in lieu of arrest, and indirectly by restricting access to justice and thus creating an environment of impunity for perpetrators of violence [ 97 , 102 , 122 , 125 , 127 – 130 ].

Violence and abuses of power by police were reported across all genders and diverse political and economic contexts, including Cambodia, Canada, the Democratic Republic of the Congo, India, Kenya, Nepal, Nigeria, Pakistan, Serbia, South Africa, Sri Lanka, Thailand, Uganda, the US, and Zimbabwe [ 49 , 97 , 99 , 104 , 106 , 111 , 112 , 118 , 119 , 122 , 125 , 127 , 128 ]. This took the form of arbitrary arrest and detention, verbal harassment, intimidation, humiliating and derogatory treatment, extortion, forcible displacement, physical violence, gang rape, and other forms of sexual violence during raids and in police custody [ 49 , 97 , 99 , 103 , 104 , 106 , 111 , 112 , 118 , 122 , 127 , 128 ]. In Kenya, Mexico, Nepal, Pakistan, Serbia, Sri Lanka, and the US, sex workers experienced extortion (unofficial ‘fines’, payments, or bribes) or provided sexual services enforced through physical or sexual violence or under threat of detention, arrest, transfer to rehabilitation centres, or forced registration (Quotes 10 and 11) [ 49 , 101 , 103 , 110 , 119 , 122 , 128 – 130 ], with limited or no opportunity to negotiate condom use [ 128 ]. Similar extortion and/or arbitrary fines were reported in China, India, Thailand, and Turkey (Quote 12) [ 99 , 107 , 110 , 125 ]. In Nepal, cis female sex workers, including those hired as peer educators, reported being arrested, beaten, and robbed by police upon being found in possession of condoms [ 106 ].

Reporting violence could result in sex workers’ being further criminalised [ 49 , 97 , 120 – 122 , 127 , 128 ]. Sex workers were reluctant to report violence and theft to the police [ 98 , 125 ] for fear of the following: arrest for prostitution-related activities, unrelated petty offences, or non-payment of previous fines [ 97 , 98 , 116 , 120 , 124 , 131 ]; being accused of crimes they had not committed [ 49 , 103 ]; harsh treatment or moral judgement [ 97 , 120 ]; further extortion or violence [ 35 , 101 , 112 ]; disclosure in court [ 97 ]; prohibitive costs [ 112 ]; or because no action would be taken to address the crime [ 97 , 111 , 112 , 114 , 116 ]. Long-standing discrimination, and the sense that police viewed them as criminals, made sex workers doubt the police would take complaints seriously [ 114 , 115 , 128 ]. When reports were submitted to police, sex workers’ accounts were dismissed as implausible, with police simultaneously blaming sex workers for the violence they had experienced [ 49 , 120 , 125 ], discrediting them as victims (Quote 13) [ 97 , 103 , 121 , 127 , 128 ], and sometimes further attacking or extorting them [ 49 ]. Cis and trans women in Canada and the US reported police questioning whether it is possible for a sex worker to be raped [ 97 , 128 ]. (Quote 14). Similarly, in Kenya, one cis woman reported being asked by an officer ‘how a prostitute like me could be raped as I was used to all sizes’, discouraging her from going to the police in future: ‘Never will I again go to report a case’ [ 127 ]. This produces an environment of impunity, where further violence, extortion, and theft from police and others operate unchecked [ 98 , 103 , 120 , 121 , 125 , 127 ], perceived to be a major contributor in normalising violence against sex workers [ 26 , 125 ].

Reluctance to report violence occurred even in contexts where the purchase but not the sale of sex was criminalised, due to fears that information about where sex work takes place could be used to target clients and harass sex workers (Quote 15) [ 34 , 114 ]. While some cis and trans women in Canada felt that police were now more concerned for their safety [ 26 , 114 ], others felt that officers continued to view them as ‘trash’, blame them for the violence they experienced, and deprioritise their safety [ 97 ], despite laws and police guidelines constructing them as victims [ 26 ]. In contexts of regulation, registered sex workers in Guatemala viewed their health cards (recording compliance with mandatory testing) as protective against police and immigration harassment [ 126 , 132 ], and registered sex workers in Mexico had better access to police protection but rarely reported violence [ 35 ]. In Senegal, registered workers still experienced being disbelieved when reporting physical or economic violence to police and so were reluctant to report it as a result (Quote 16) [ 105 ]. Concerns about being exposed to family and friends were paramount [ 35 , 105 ] and deterred some from registering [ 126 ]. Relationships with police were precarious, conditional on maintaining registered status, which can vary each month depending on compliance with mandatory screening requirements—with those whose registration has (temporarily) lapsed facing arrest, detention, and/or fines (Quote 17) [ 35 , 126 ]. Those who were not registered were afraid they would be sent to jail or fined for working illegally, or for active drug use [ 35 ], and were more heavily targeted by police for fines, arrest, detention, extortion, and sometimes sexual violence [ 35 , 101 , 124 ]. In India, marked reductions in police raids and violence were achieved through a peer-based intervention that facilitated access to justice and challenged power relations between sex workers and police, although some officers cited lengthy procedures to dissuade reporting [ 99 ]. In Canada, Mexico, Thailand, and the US, some sex workers described certain officers’ concern for their safety and support, but such concern was the exception [ 35 , 97 , 103 , 125 ].

Since decriminalisation in New Zealand, sex workers describe having better relationships with the police, and greater access to justice which—despite some prevailing mistrust in police—makes them feel safer and more confident with clients [ 36 , 95 , 96 ] and more deserving of respect (Quote 18) [ 36 ]. The removal of threat of arrest—which reduced police power and afforded sex workers rights—gave sex workers, and particularly young people [ 95 ], greater confidence to report violent incidents, exploitation by managers, and disputes with clients [ 36 , 96 ]. However, some officers treated disputes with clients as breaches of contract rather than crimes [ 96 ]. While there were still some reports of abuses of police power, there were also examples of offending officers being prosecuted as a result, helping to challenge environments of impunity [ 36 , 94 , 96 ].

Core category 3: Reproduction of multiple stigmas and inequalities.

Findings show that repressive police treatment reinforced inequalities and entrenched marginalisation of sex workers, as well as creating disparities within sex-working communities, with police targeting specific settings or populations. In the context of full criminalisation in Sri Lanka, sex workers reported experiencing harsher punishment than their clients or managers: both sex workers and clients might be fined, but clients were not arrested or charged in the way that sex workers were [ 49 ], nor were managers of flats arrested during police raids [ 120 ]. Across settings, arrests, fines, extortion, and theft by police particularly targeted street-based sex workers [ 101 , 103 , 120 , 128 ], resulting in loss of income and increased economic vulnerabilities (Quote 19) [ 49 , 99 , 103 , 118 , 125 , 127 , 129 , 130 ]. Findings from Canada, Sri Lanka, and the US also show how criminalisation and police enforcement restricted freedom of movement, as sex workers were targeted arbitrarily by police during and outside of sex work hours and environments [ 49 , 97 , 103 , 120 , 128 ], and outed as sex workers by officers [ 97 ].

Studies showed how police targeting and mistreatment of sex workers, and inaccessibility to justice, reproduced inequalities and discrimination against sexual and gender minorities [ 26 , 49 , 116 , 119 , 127 , 129 , 130 ], people who use drugs [ 22 , 103 , 128 , 133 ], women, people of colour, and migrants [ 26 , 34 , 97 , 98 , 128 , 129 , 132 ]. In Serbia, Roma trans sex workers were treated with ‘contempt’ both by police enacting ‘extreme violence’ against them and by clients who expected cis women (Quote 20) [ 129 ]. In sub-Saharan Africa, male and trans sex workers described the ‘double stigma’ they faced, which could result in humiliation, ostracisation, eviction, and lack of access to micro-finance schemes, and this was worse in settings where homosexuality is also criminalised (Quote 21) [ 127 ]. In Sri Lanka, where both sex work and homosexuality are criminalised, trans sex workers were less likely to be charged than cis women but they experienced extensive extortion, humiliation, false accusations of crime, and verbal, physical, and sexual violence by officers targeting their gender expression (Quote 22) [ 49 , 120 ]. Similar experiences were reported among feminine-presenting male and trans sex workers in Pakistan and among trans women and sex workers of colour in Canada and the US [ 26 , 119 , 128 ]. In Canada, trans sex workers attributed officers’ lack of response to their reports of violence to the stigma and discrimination surrounding their gender, sex work, and drug use, reinforcing their self-blame [ 116 ].

Long-standing racial discrimination and community mistrust reinforced black and indigenous sex workers’ doubts that the police would take their complaints of violence seriously [ 26 , 128 ], and drug use was used to undermine sex workers’ testimony against their attackers (Quote 23) [ 128 ]. In the US, one woman described what police said to an ex-boyfriend who had beaten her up: ‘You can’t go hitting her, even though I’d hit her for being a junkie’ [ 128 ]. In Canada, a cis female independent sex worker described a police officer calling her ‘just a fat…native whore’ [ 97 ], while some white male independent sex workers attributed their lack of police attention to their race and social and economic privilege [ 102 ].

In criminalised and regulated settings, the precarious legal status of undocumented or unregistered migrant sex workers was used by clients [ 127 ] and venue owners [ 132 ] to refuse payment, and by landlords to charge inflated rents for substandard rooms [ 107 ]. Migrant sex workers did not report violence and other crimes to the police due to fear of deportation [ 35 , 131 , 132 ] or language barriers [ 98 ]. In Guatemala, police officers sometimes rounded up migrant sex workers whether or not they were registered [ 126 ], and in Turkey, police targeted ‘foreign-looking’ women presumed to be migrant sex workers [ 107 ]. In Sweden, immigration legislation and anti-trafficking policies have been used to deport migrant sex workers, despite their characterisation in national prostitution law as victims of violence, as a way of reducing sex work [ 34 ].

Core category 4: Restricted access to health and social care and support.

Research demonstrates how criminalisation and police enforcement restrict sex workers’ access to health and social care. In Cambodia and various sub-Saharan African countries, crackdowns on brothels have reduced access to health services by disrupting peer networks and displacing sex workers from usual places of work, making it difficult for outreach services to find people, and hindering collective organisation (Quote 24) [ 118 , 127 ]. In China, sex workers were reluctant to accept condoms from health services after police crackdowns, for fear of their use as evidence [ 110 ]. In Sweden, the mandate to reduce sex work acted as a barrier to services, as sex workers’ access became conditional on leaving the sex trade and conforming to a victim discourse, and health services no longer distributed condoms through outreach [ 34 ]. Based on ethnographic observations, authors noted multiple difficulties experienced by sex workers as a result of laws against renting property used for sex work, including problems with eviction as well as with immigration, child custody, and tax authorities [ 34 ]. In Canada, some sex workers had received referrals from supportive police to health, counselling, and legal aid services [ 97 ], but indoor venue managers remained reluctant to allow outreach visits for fear of prosecution, restricting access to sexual and broader healthcare—particularly disadvantaging migrant sex workers who relied on outreach [ 93 ]. Trans sex workers in Canada [ 116 ] and sex workers of all genders in South Australia [ 98 ] were fearful of accessing clinics [ 116 ], sex-worker-led outreach services, and peer information and resources [ 98 ], for fear of being reported to the police.

Studies showed how registration and mandatory testing necessitated more frequent contact with healthcare systems [ 100 , 108 , 115 , 132 ] and were viewed positively by authors in Nevada, US, as a way of maintaining a low level of STIs [ 100 ] and by some sex workers as a form of self-responsibility for health [ 108 , 126 ]. However, in Guatemala the decision to comply with testing requirements was mostly motivated by fear of police harassment and detention rather than health considerations [ 126 , 132 ]. In Turkey, unregistered migrant sex workers were forcibly tested upon arrest [ 107 ], and in Australia, some sex workers experienced judgement and were refused testing by health professionals [ 108 ]. Mandatory testing of sex workers is considered a rights violation by the UN Refugee Agency and the Joint United Nations Programme on HIV/AIDS that can create barriers to sex workers accessing voluntary services and can facilitate discrimination against sex workers living with HIV. In Nevada, sex workers who test HIV positive can face up to 10 years in prison if they are found selling sex in a licensed or an unlicensed environment [ 100 ]. Discrimination against sex workers in general was often reinforced, and mandatory registration was not only time-consuming but could lead to public disclosure of sex work, adversely affecting individuals’ credit rating and ability to obtain a loan (Quotes 25–28) [ 108 , 115 , 127 ]. Regulation systems also restricted migrants’ access to sexual health services [ 35 ], and those with undocumented status in Turkey lacked broader access to healthcare and banking services, leaving them vulnerable to theft [ 107 ]. In Canada, sex workers’ fear of becoming known to the authorities left them dependent on cash and unable to access loans [ 107 , 121 ].

Box 1. Quotes

Core category 1: disrupted work spaces and safety strategies.

Quote 1: ‘They couldn’t have designed a law better to make it less safe, even if they sat for years! It’s like you have to hide out, you can’t talk to a guy, and there’s no discussion about what you’re willing to do and for how much. The negotiation has to take place afterwards, which is always so much scarier. And you’re in a parking lot somewhere with some dude and all of a sudden he decides he doesn’t want to pay that, or pay anything at all and what are you going to do about it? So, yeah, it’s designed to set it up to be dangerous. I don’t think it was the original intention, but that’s what it does.’—cis woman, sector and age unspecified, Canada [ 121 ]

Quote 2: ‘Twenty seconds, one minute, two minutes, you have to decide if you should go into this person’s car…now I guess if I’m standing there, and the guy, he will be really scared to pick me up, and he will wave with his hand “Come here, we can go here round the corner, and make up the arrangement”, and that would be much more dangerous.’—cis woman, internet escort/street, age unspecified, Canada [ 34 ]

Quote 3: ‘While they’re going around chasing johns away from pulling up beside you, I have to stay out for longer.…Whereas if we weren’t harassed we would be able to be more choosy as to where we get in, who we get in with you know what I mean? Because of being so cold and being harassed I got into a car where I normally wouldn’t have. The guy didn’t look at my face right away. And I just hopped in cause I was cold and tired of standing out there. And you know, he put something to my throat. And I had to do it for nothing. Whereas I woulda made sure he looked at me, if I hadn’t been waiting out there so long.’—cis woman, street, age unspecified, Canada [ 114 ]

Quote 4a: ‘Sometimes the guy will drive up and just sort of wave or point to go down the alley or something like that somewhere else where he can pick me up. [How does that affect your safety?] You never know who it is, right? And you can’t really see his face, can’t really see anything they could have a gun in their hand or. You know what I mean they could be a little drunk or something if you can’t really see them very clearly, you know. And you don’t you can’t say hi or whatever before you get in. You have to just hurry up before the cops come.’—cis woman, street, age unspecified, Canada [ 114 ]

Quote 4b: ‘Clients are worried about police. To avoid police they wanna move to a different area. I don’t want to go out of my zone right.…Once you get out there, like you know their turf so it’s harder for me cause it’s their comfort zone so they act differently, you know what I mean. Yeah it never ends up good’—cis woman, street, age unspecified, Canada [ 114 ]

Quote 5: ‘The ideal situation is where you…have a separate premises where you can work from, and share those premises…Because then you’ve got companionship, added security, there’s someone to interact with. Because of the legal situation you have to be very, very careful. Because obviously it’s running a brothel, which has…really dangerous consequences these days.’—cis man, independent, age unspecified, UK [ 123 ]

Quote 6a: ‘In the past, we just stay in the brothel and no one dared to hurt us or beat us because we are there in the brothel. But now [since police crackdowns] we cannot know where they take us to. Such as taking us to Prek Ho [a village 15 km from Phnom Penh] and hurt us. We don’t know in advance. There is no one to control us. So it is not safe for us.’—cis woman, formerly brothel-based, age 26 years, Cambodia [ 118 ]

Quote 6b: ‘Now some clients may force us not to use condoms but when we lived in the brothel we had more rights than clients and they dared not to force us because they come into our house.’—cis woman, formerly brothel-based, age 22 years, Cambodia [ 118 ]

Quote 7: ‘One of the staff caught one [a violent client]. He was a visitor in the house, and he came in as a date, and they called the police, and he got arrested.’—cis woman, indoor, age unspecified, Canada [ 113 ]

Quote 8: ‘And the police weren’t around as much (before decriminalization). But when it got legalised the police were everywhere. We always have police coming up and down the street every night, and we’d even have them coming over to make sure that we were all right and making sure our minders, that we’ve got minders and that they were taking registration plates and the identity of the clients. So it was, it changed the whole street, it’s changed everything.’—cis woman, street, age unspecified, New Zealand [ 36 ]

Quote 9: ‘You stand outside the car and talk. Don’t get in the car and talk—it’s best to just get them to wind the window down, stand there, talk to them and judge them. Yeah.’—cis woman, street, age unspecified, New Zealand [ 94 ]

Core category 2: Institutionalised violence, coercion, and extortion, and restricted access to justice

Quote 10: ‘There was this time when I was arrested by six policemen. They afterwards demanded sex from me. One of them threatened to stab me if I refused. I ended up having sex with all of them and the experience was so painful.’—cis man, sector unspecified, age 26 years, Kenya [ 127 ]

Quote 11: ‘It’s really pathetic taking money from us. I don’t know how they don’t understand I struggled for that. I sold my body. I worked. The man, for instance, pardon me, fucked me and everything, for the money. And they take the money. Why? I don’t know, but so they say it goes into some fund, what do I know?’—cis woman, street, age not specified, Serbia [ 129 ]

Quote 12: ‘Does the law limit how much they [police] charge [when fining sex workers]? Today, 500, tomorrow 300. Why the law does not limit…the charges for this amount? For gambling, 1000 charged, prostitution 500, isn’t there a limit? We don’t understand. I feel like the charges just depend on their [police] mood.’—cis woman, focus group, sector and age not specified, Thailand [ 125 ]

Quote 13: [In a case where a participant reported being attacked by a client and the case going to court.] ‘He ended up getting off even though I had photos of the bruises. This is likely related to the institutional attitude that women who sell sex deserve what they get from taking on a dangerous occupation—it’s such bullshit but so common! Also, I feared prosecution myself as a prostitute so I was unable to be completely truthful in court and my abuser was let off—even with the evidence’—cis woman, independent off street, age not specified, Canada [ 121 ]

Quote 14: ‘The police don’t look at us as victims when we’re raped and when we’re beaten and stuff like that. If we get into a physical altercation and we have to fight for our lives, we’re most likely to be jailed because of it.’—cis woman, sector not specified, age 40 years, US [ 128 ]

Quote 15: ‘They come to my door and, you know, ask for my ID and so forth so it’s like harassment…The third time it’s like, “We know what you’re doing, I mean, what you’re about. We’re going to go after your clients”…I make a living out of this, so I was really paranoid for a very long time after.’—cis woman, internet escort, age not specified, Sweden [ 34 ]

Quote 16: ‘One night a client went off with a girl, and after their encounter he beat her. The next day she recognised him in the bar and told the bar owner who told her to go to the police. When she got to the police station the officers didn’t believe her—they said she didn’t have any proof. The police don’t give us any help at all.’—cis women, working in a bar with registration, age not specified, Senegal [ 105 ]

Quote 17: ‘Once, I forgot to return [to the city clinic] for a health stamp. The police threatened to take me and nine other girls to jail, but they let us go with a warning and a 2,000 pesos fine [$220].’—cis woman, sector not specified, age 19 years, Mexico [ 35 ]

Quote 18: ‘Well it definitely makes me feel like, if anything were to go wrong, then it’s much more easier for me to get my voice heard. And I also, I also feel like it’s some kind of hope that there’s slowly going to be more tolerance perhaps of you know, what it is to be a sex worker. And it affects my work, I think…when I’m in a room with a client…I feel like I am deserving of more respect because I’m not doing something that’s illegal. So I guess it gives me a lot more confidence with a client because, you know, I’m doing something that’s legal, and there’s no way that they can, you know, dispute that. And you know, I feel like if I’m in a room with a client, then it’s safer, because, you know, maybe if it wasn’t legal, then, you know, he could use that against me or threaten me with something, or you know. But now that it’s legal, they can’t do that.’—cis woman, sector and age not specified, New Zealand [ 36 ]

Core category 3: Reproduction of multiple stigmas and inequalities

Quote 19: ‘Now if I get caught to police people, they check pockets and all and take everything.…the police people will snatch it [money] away…Even if we find two hundred [rupees] a police person will come [and take it].’—trans woman (nachichi), street, age unspecified, Sri Lanka [ 49 ]

Quote 20: ‘They [police] started going wild, only on us transvestites. They let the girls go. They just pick us up, and go to the woods, and go wild on us…First, they beat us in the woods, and then they take us to the station. And then they tell us at the station “Hey, freshen up,” and they beat us up in the bathroom’—transvestite [author’s term], street, age unspecified, Serbia [ 129 ]

Quote 21: ‘Sometimes a man will take you and after fucking, he says, “You are gay, where can you report me? I’m not paying you and you can do nothing about it.”‘—cis man, focus group, sector and age unspecified, Uganda [ 127 ]

Quote 22: [After reporting being jailed on charges of prostitution and describing an incident with police involving forced gender behaviour] ‘I’m very scared of policemen of course.…They straight away tell.…“Go sing a song! sweep!” Talk to us like dogs.’—trans woman, street, age unspecified, Sri Lanka [ 49 ]

Quote 23: ‘Because it wasn’t a trial of rape, it was a trial of me being a heroin addict, me being on methadone. It got thrown out of court….’—cis woman, street, age unspecified, Canada [ 22 ]

Core category 4: Restricted access to health and social care and support

Quote 24: ‘Since the new law was passed, fewer women access health care and prevention services because we live at different places nowadays and NGOs could not find us. In the past, women live in one place at the brothel. We also want to contact NGOs but we don’t know the location of the NGOs…So we could not access to prevention services…Since the brothel was closed I have never contacted it again.’—cis woman, brothel, age 22 years, Cambodia [ 118 ]

Quote 25: ‘Because the policemen crack down often we cannot earn money. We are sleepless, so we sleep at day time, so I am lazy to go to check my health. I have no feeling to go.’—cis woman, brothel, age 22 years, Cambodia [ 118 ]

Quote 26: ‘I think every month is stupid. It has to be every three months at least. Because it’s a pain for owners, it’s a pain for girls, for everyone, because like you can’t go to your family doctor and say, “Listen I need a certificate”. You have to go to a sexual health clinic and wait all day to see a doctor.’—cis woman, brothel and escort, age unspecified, Australia [ 108 ]

Quote 27: ‘[For] any insurance one of the questions is, “Have you been a prostitute?” Whatever, now if they pulled your health records and they saw how many tests you’d had, you can’t lie about that one and I think it should be totally illegal [insurance companies asking about sex work]. And I would like to see them do a bit of a study on girls in the sex industry who have worked, that aren’t on drugs and how many diseases they actually have, to see if this kind of discrimination is warranted, because it’s not.’—cis woman, sector and age unspecified, US [ 108 ]

Quote 28: ‘I worked in a legal prostitution setting in Nevada. I did that for a couple of weeks to see what it was like. The amount of controls and the lack of freedom was horrendous. You know, I don’t want someone else telling me how to work. And I don’t think it is necessary really. Yeah, I think decriminalization gives us the most freedom.’—cis woman, independent in-call and out-call, age 39 years, US [ 115 ]

We estimate that, collectively, lawful or unlawful repressive policing practices linked to sex work criminalisation (partial or full) are associated with increased risk of infection with HIV or STIs, sexual or physical violence from clients or intimate partners, and condomless sex. The qualitative synthesis clearly shows pathways through which these policing practices and health risks are associated: enacted or feared police enforcement—targeting sex workers, clients, or third parties organising sex work—displaces sex workers into isolated and dangerous work locations and disrupts risk reduction strategies, such as screening and negotiating with clients, carrying condoms, and working with others. Specific policing practices, including confiscation of condoms or needles/syringes, are associated with increased odds of HIV, STIs, and violence by a range of actors. Repressive police practices frequently constitute basic violations of human rights, including unlawful arrest and detention, extortion, physical and sexual violence by law enforcement, lack of recourse to justice, and forced HIV testing—violations inextricably linked to increased unprotected sex, transmission of HIV and STIs, increased violence from all actors, and poorer access to health services [ 3 , 29 , 134 ]. The qualitative synthesis shows how violence and stigma against sex workers are institutionalised, legitimised, and rendered invisible [ 26 , 35 ] in contexts of any criminalisation and regulation [ 26 , 35 ], as sex workers across settings consistently report being further criminalised, blamed, or ignored when they report crimes against them. This structural, symbolic, and everyday violence fosters climates of impunity and under-reporting, and failure to recognise sex workers as citizens deserving protection, care, and support [ 26 ]. Targeting and exclusion of the most marginalised sex workers reinforces and obscures the injustices they face.

Our findings build on previous reviews documenting the extent to which and how social and structural factors influence sex workers’ safety and vulnerability to HIV. They do so by showing how these factors interplay with criminalisation to further marginalise sex workers and deprive them of civil, labour, and social rights [ 134 – 137 ]. Fear of prosecution and moral judgement, due to laws against homosexuality and transgenderism [ 138 ] and drug use [ 135 ], and, in the case of migrant workers [ 139 ], fear of deportation, further reduce willingness to report violence and exploitation to the police. Other evidence has shown how evictions based on landlords’ fears of brothel-keeping charges increase vulnerability to homelessness for sex workers and their families, while arrest and criminal records or simply being identified as a sex worker can lead to sex workers’ children being placed in institutional care [ 135 , 140 ].

Despite including search terms relating to broader health outcomes, the majority of epidemiological literature focused on sexual health outcomes and, in more recent evidence, violence. We found few studies that focused on emotional health, but these show detrimental associations with repressive policing and criminalisation. Qualitative and quantitative studies demonstrate that police enforcement and its threat is a major source of anxiety [ 103 , 141 ], whereas working in indoor, decriminalised environments is associated with improved mental health outcomes [ 32 , 142 ]. A recent critical literature review demonstrates that criminalisation, stigma, poor working conditions, isolation from peer and social networks, and financial insecurity have negative repercussions for sex workers’ mental health [ 13 ]. Only 1 quantitative study reported on the associations between policing and violence from intimate or other partners, and further research is needed to understand the mechanisms of this relationship [ 58 ]. It is clear that criminalisation and stigma interact to reproduce sex workers’ exposure to physical and sexual violence, and limit possibilities to resist or challenge it, and interventions are urgently needed to address violence against sex workers from all perpetrators. Successful sex-worker-led approaches to improving access to justice and challenging institutional stigma in South India offer important examples of what can be achieved with sustained funding and support [ 99 ].

Findings clearly show that criminally enforced regulatory models create major disparities within sex worker communities, possibly enabling access to safer conditions for some but excluding the large majority who remain under a system of criminalisation, including trans women, cis men, people who use drugs, migrant populations, and often sex workers operating in outdoor environments, who are at increased risk of HIV in many settings [ 81 , 90 , 126 ]. In contexts of mandatory HIV testing following arrest, fear of enforcement can hinder voluntary uptake of HIV testing and interventions [ 71 , 80 ], showing how this punitive approach to public health ultimately reduces access to health services. More recent research from Senegal has shown that while registration was associated with better physical health, the stigma attached to being registered has a detrimental effect on well-being; only a minority of sex workers are registered, and those who test HIV positive are excluded [ 143 ]. As the qualitative synthesis demonstrates, in New Zealand, following decriminalisation, sex workers reported being better able to refuse clients and insist on condom use, amid improved relationships with police and managers [ 36 , 144 , 145 ]. Other research in this setting indicates that decriminalisation has the potential not only to reduce discrimination, denials of justice, denigration, and verbal abuse but also to improve sex workers’ emotional well-being [ 31 ]. This concords with existing modelling data that suggest a positive effect of decriminalisation on incidence of HIV [ 2 ].

We were unable to examine the effects of different legislative models in the quantitative synthesis due to limited data, particularly for the models of decriminalisation and the criminalisation of the purchase of sex. Evidence included in our qualitative synthesis clearly shows that criminalisation of clients does not facilitate access to services, nor minimise violence. This is supported by the epidemiological evidence from Vancouver that showed that sex workers who were stopped, searched, or arrested were at increased risk of client violence despite the introduction of more severe laws against the purchase of sex introduced in 2014 (alongside fewer sanctions for sex workers working together and modelled on the Swedish law) [ 57 ]. In addition, the practice of rushing negotiations due to police presence increased and was associated with increased client-perpetrated violence [ 92 ]. Findings from our qualitative synthesis suggest that enforcement strategies that seek to reduce the numbers of sex workers [ 118 ] or clients [ 114 ] are unlikely to achieve these effects, since the economic needs of sex workers remain unchanged, resulting in sex workers having to work longer hours, accept greater risks, and deprioritise health. There is no reliable evidence from Sweden that the numbers of sex workers have decreased since the law changed in 1999 [ 34 ].

Limitations

There are a number of limitations to this review. Findings from our pooled meta-analyses examining condom use and violence were limited by high heterogeneity, although effect estimates remained consistent across sensitivity analyses, suggesting we can be confident in their robustness. By limiting the search to literature written in English, Russian, and Spanish, we may have missed key studies. There was a lack of comparable quantitative data on outcomes such as access to services, drug-related harms, and emotional ill health, which precluded the use of meta-analysis. Similarly, few qualitative studies explored the emotional health effects of criminalisation and enforcement, and its effects on access to health and broader services received less attention relative to safety and health risks, within the rich body of evidence reviewed. Methodologically, some studies did not provide sufficient detail on sampling and analysis methods, and few included reflexive discussions on the position of the researcher. Although a growing number involve sex workers as researchers or advisors, few included discussion of the challenges and benefits of participatory approaches. We found few eligible studies that included trans female or cis male sex workers, who experience particular inequalities in relation to HIV, access to services, and—as the qualitative synthesis shows—police targeting and violence, limiting our ability to generalise findings to these populations. It is also possible that some studies may not have differentiated between trans women and cis men [ 146 ], or between cis and trans participants within samples of female and male sex workers, and few disaggregated experiences or outcomes by gender. This is an important area of future research given the specific vulnerabilities experienced by these populations, in contexts where gender and sexual minorities are criminalised, inadequately protected against hate crimes, and, in the case of trans people, not legally recognised. There is particular need for research with trans women, who experience intense violence, discrimination, and exclusion from education and employment, and whose health needs have been obscured by their conflation with ‘men who have sex with men’ [ 146 ].

Our review focuses on the implementation of enforcement practices linked to 5 broad legislative models. While it is clear that sex work laws and enforcement practices are inextricably integrated and it is key to link practice to legal frameworks to inform policy-making and advocacy, our findings reinforce previous evidence [ 37 , 38 ] that shows wide variation in how laws are enforced, which vary with sex work setting [ 126 ], visibility of sex work, sex workers’ and managers’ relationships with individual officers [ 99 , 101 ], and political and media attention [ 110 , 125 ], or arbitrarily by city [ 121 ]. We report on recent and past history of arrest or prison based on the information available to us, but few studies reported whether the arrest was related to sex work, was related to another offence, or had to do with social, gender, or racial profiling. Assessing the extent to which the enforcement practice was lawful or unlawful is beyond the scope of this review, but in some cases unlawful activities are clearly evidenced (e.g., police violence) while in others they are less visible or evidenced. This limits our ability to assess the specific contribution of sex work penalties to the health and safety of sex workers, relative to the use of other penalties and abuses of police powers against sex workers in contexts of criminalisation. Lack of clarity on the lawfulness of police enforcement practices also reflects the difficulties in measuring stigma and its interaction with criminalisation, and the need for mixed-methods approaches to unpack these complexities in context. We found few data on the interplay between criminalisation, collective organisation, and health outcomes. Evidence from India has shown how tackling social injustice and mistreatment by the police as part of a sex-worker-led HIV prevention intervention has resulted in fewer arrests, more explanation of reasons for arrest, and fairer treatment by the police, as well as decreased violence against sex workers [ 84 , 99 ]. However, most evaluations of community-led health interventions have been limited to HIV prevention and have been implemented in India, Dominican Republic, and Brazil [ 147 , 148 ]. Although there are numerous examples of active sex worker organisations advocating for sex worker rights and evidence-based policy internationally, as well as developing guidelines for rights-based HIV programming with, for, and by sex workers [ 149 ], the voices of sex workers continue to be dismissed and silenced in policy debates in many settings as well as in the design and evaluation of public health interventions.

The public health evidence clearly shows the harms associated with all forms of sex work criminalisation, including regulatory systems, which effectively leave the most marginalised, and typically the majority of, sex workers outside of the law. These legislative models deprioritise sex workers’ safety, health, and rights and hinder access to due process of law. The evidence available suggests that decriminalisation can improve relationships between sex workers and the police, increasing ability to report incidences of violence and facilitate access to services [ 36 , 95 , 96 ]. Considering these findings within a human rights framework, they highlight the urgency of reforming policies and laws shown to increase health harms and act as barriers to the realisation of health, removing laws and enforcement against sex workers and clients, and building in health and safety protections [ 134 ]. It is clear that while legislative change is key, it is not enough on its own. Law reform needs to be accompanied by policies and political commitment to reducing structural inequalities, stigma, and exclusion—including introducing anti-discrimination and hate crime laws that protect sex workers and sexual, gender, racial, and ethnic minorities. Mixed-methods, interdisciplinary, and participatory research is needed to document the context-specific ways in which criminalisation or decriminalisation interacts with other structural factors and policies related to stigma, poverty, migration, housing, and sex worker collective organising, to inform locally relevant interventions alongside legal reform. This research must go alongside efforts to examine concerns surrounding decriminalisation of sex work within institutions and communities, which influence policy and practice, and sex workers must be involved in decision-making over any such research and reforms [ 121 , 150 ]. Opponents of decriminalisation of sex work often voice concerns that decriminalisation normalises violence and gender inequalities, but what is clear from our review is that criminalisation does just this by restricting sex workers’ access to justice and reinforcing the marginalisation of already-marginalised women and sexual and gender minorities. The recognition of sex work as an occupation is an important step towards conferring social, labour, and civil rights on all sex workers, and this must be accompanied by concerted efforts to challenge and redress cultures of discrimination and violence against people who sell sex. While such reforms and related institutional shifts are likely to be achieved only in the long term, immediate interventions are needed to support sex workers, including the funding and scale-up of specialist and sex-worker-led services that can address the multiple and linked health and social care needs that sex workers may face.

Supporting information

S1 moose checklist..

https://doi.org/10.1371/journal.pmed.1002680.s001

S1 Fig. Sensitivity analysis of unadjusted and adjusted estimates of HIV/STI stratified by police exposure.

https://doi.org/10.1371/journal.pmed.1002680.s002

S2 Fig. Sensitivity analysis of unadjusted and adjusted estimates of sexual/physical violence stratified by police exposure.

https://doi.org/10.1371/journal.pmed.1002680.s003

S3 Fig. Sensitivity analysis of unadjusted and adjusted estimates of condomless sex stratified by police exposure.

https://doi.org/10.1371/journal.pmed.1002680.s004

S4 Fig. Sensitivity analysis of outcome misclassification.

https://doi.org/10.1371/journal.pmed.1002680.s005

S1 Table. Quality assessment of quantitative studies.

https://doi.org/10.1371/journal.pmed.1002680.s006

S2 Table. Data used in R for meta-analysis.

https://doi.org/10.1371/journal.pmed.1002680.s007

S1 Text. Systematic review protocol.

https://doi.org/10.1371/journal.pmed.1002680.s008

S2 Text. Summary of CERQual assessment.

https://doi.org/10.1371/journal.pmed.1002680.s009

S3 Text. Category themes and sub-themes.

https://doi.org/10.1371/journal.pmed.1002680.s010

S4 Text. All references reviewed as part of qualitative synthesis.

https://doi.org/10.1371/journal.pmed.1002680.s011

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Open access
Published: 30 August 2024

Experiences and impacts of psychological support following adverse neonatal experiences or perinatal loss: a qualitative analysis

Gill Thomson 1 ,
Lara McNally 1 &
Rebecca Nowland 1

BMC Pregnancy and Childbirth volume 24 , Article number: 569 ( 2024 ) Cite this article

Metrics details

Poor parental mental health in the perinatal period has detrimental impacts on the lives and relationships of parents and their babies. Parents whose babies are born premature and/or sick and require neonatal care or those who experience perinatal loss are at increased risk of adverse mental health outcomes. In 2021 a North-West charity received funding to offer psychological support to service users of infants admitted to neonatal care or those who had experienced perinatal loss, named the Family Well-being Service (FWS). The FWS offered three different types of support – ad hoc support at the neonatal units or specialist clinics; one-to-one person-centred therapy; or group counselling. Here we report the qualitative findings from an independent evaluation of the FWS.

Thirty-seven interviews took place online or over the phone with 16 service users (of whom two took part in a follow-up interview), eight FWS providers and 11 healthcare professionals. Interviews were coded and analysed using thematic analysis.

The analysis revealed two themes. ‘Creating time and space for support’ detailed the informational, contextual, and relational basis of the service. This theme describes the importance of tailoring communications and having a flexible and proactive approach to service user engagement. Service users valued being listened to without judgement and having the space to discuss their own needs with a therapist who was independent of healthcare. Communication, access, and service delivery barriers are also highlighted. The second theme - ‘making a difference’ - describes the cognitive, emotional, and interpersonal benefits for service users. These included service users being provided with tools for positive coping, and how the support had led to enhanced well-being, improved relationships, and confidence in returning to work.

The findings complement and extend the existing literature by offering new insights into therapeutic support for service users experiencing adverse neonatal experiences or perinatal loss. Key mechanisms of effective support, irrespective of whether it is provided on a one-to-one or group basis were identified. These mechanisms include clear information, flexibility (in access or delivery), being independent of statutory provision, focused on individual needs, active listening, the use of therapeutic tools, and positive relationships with the therapist. Further opportunities to engage with those less willing to take up mental health support should be developed.

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Introduction

Perinatal mental health refers to mental health during pregnancy or within the first year after having a baby [ 1 ]. It is estimated that up to 20% of women experience poor mental health such as antenatal or postnatal depression, anxiety, post-traumatic stress, or other complications such as postpartum psychosis [ 1 ]. Two key areas that can impact perinatal mental health relate to having a baby admitted to neonatal care, or experiencing a perinatal loss (such as miscarriage, stillbirth, or early neonatal death). Both situations induce similar responses but for different reasons. The need to promote positive parental health is well-reported due to the links between poor mental health and parent relationships [ 2 ] and poorer infant and child social, emotional, behavioural, and cognitive developmental outcomes [ 3 , 4 , 5 ].

Having a baby admitted to neonatal care can be a devastating experience for parents [ 6 ] due to experiencing a traumatic birth, concerns over infant viability and the unfamiliar and technological nature of the neonatal environment [ 7 ]. A recent systematic review and meta-analysis to explore prevalence rates of depression and anxiety for mothers and fathers of preterm infants reported depression rates of 29.2% for mothers and 17.4% for fathers, and anxiety rates of 37.7% and 18.3% for mothers and fathers respectively [ 8 ]. Mothers of premature infants have also been found to experience higher rates of post-traumatic stress when compared to fathers [ 9 ]. Perinatal loss is also reported to have profound and lasting effects on the mental health of parents due to feelings of intense grief manifested through feelings of sadness, anger, guilt, and emptiness [ 10 , 11 , 12 ]. Individuals who have experienced perinatal loss are also at increased risk of trauma symptoms, such as flashbacks and nightmares [ 13 ] and developing, or exacerbating depression and anxiety [ 10 ]. Both having a premature and/or sick infant or a perinatal loss can induce guilt due to parents blaming themselves for their baby’s prematurity or untimely death [ 10 , 11 , 14 , 15 ]. These parents can also experience social isolation through feeling disconnected from friends and family due to a lack of understanding [ 10 , 16 ].

Interventions for perinatal mental health are crucial to ensure the well-being of the parents and infants. Within neonatal care, interventions can include family-centred care [ 17 , 18 ], skin-to-skin [ 19 ] and education programmes [ 20 ]. An integrative review focused on interventions designed to improve the psychosocial needs of parents of premature and/or sick infants identified 36 different studies/interventions including creative activities, peer support, relaxation/mindfulness, spiritual/religious and psychotherapeutic support [ 7 ]. This review found varying results with a general lack of effectiveness trials and wide heterogeneity within similar interventions; mechanisms of self-care, relaxation and social opportunities were highlighted as important [ 7 ]. A further systematic review and meta-analysis of 17 psychosocial interventions for individuals experiencing perinatal loss found significant impacts on reducing depression, anxiety, and grief; with most interventions offering either counselling or structured debriefing sessions [ 21 ].

In 2021 a North-West charity received government funding to develop and evaluate a two-year (April 2021-March 2023) Family Well-being Service (FWS). This service involved three types of support. (A) Ad hoc emotion-based support provided to service users while their babies were admitted to neonatal care or attending specialist clinics following perinatal loss. (B) Person-centred one-to-one therapy (~ 10–12 weeks) delivered over the telephone or face-to-face to service users whose infants were admitted to neonatal care, had experienced perinatal loss and those attending foetal medicine clinics due to their infants experiencing complex health conditions. (C) Group support, via a 6-week face-to-face guided bereavement course designed by two of the FWS therapists for service users who had experienced perinatal loss. Group support was initially introduced as an interim measure to enable service users to receive support while they waited for one-to-one therapy. The FWS was provided to service users who received care from any of four maternity Trusts in one North-West region. Here we report some of the qualitative findings from the evaluation to highlight the experiences and impacts of the FWS on service users. This work complements existing research by offering qualitative findings of a therapeutic-based intervention for those experiencing perinatal mental health difficulties following adverse neonatal outcomes [ 22 ]. It also extends the current literature by providing insights into an ad hoc form of therapeutic support delivered during a sensitive period of infant admission.

Methodology

An exploratory descriptive approach was undertaken due to this study focusing on a new area of service delivery [ 23 ].

During the evaluation, we planned to collect demographic and outcome data from all those who received one-to-one therapy from the FWS (with this information not routinely recorded for those who received ad hoc or group-based support). The service users were asked by the FWS therapists to provide consent for data-sharing purposes. Overall, less than a third of service users who received one-to-one therapy over the evaluation period provided consent. As this meant that only a partial, and potentially unrepresentative data set was available, this information has not been reported (a full copy of the evaluation report that includes all data and outcome analyses is available from the lead author). The reason for non-consent was not recorded in case this had a negative impact on the FWS therapist-service user relationship.

As part of the evaluation, we undertook interviews with the FWS therapists who provided the therapeutic support; wider healthcare care, e.g., neonatal nurses/staff who work on the neonatal units - to capture their perceptions about the FWS being delivered at the units; and service users who had received support (ad hoc, one-to-one therapy, group-based counselling) from the FWS. In this paper, we report on insights from the qualitative data that describe the experiences and impacts of the FWS on service users.

Data collection

Data collection involved interviews with the FWS therapists, wider healthcare professionals and service users. Service users were also invited to participate in a follow-up interview ~ 6 months later to assess for longer-term impacts of the FWS and whether any additional support had been accessed. While different semi-structured interview schedules were created for the different population groups (see overview of topics for each participant group in Table 1 ), all involved exploring experiences of the FWS and recommendations for service development.

All interviews were undertaken remotely via telephone or Microsoft Teams and were video and/or audio recorded. At the start of the interview, consent statements were read out by the researcher, with participants asked to verbalise their agreement to each. The consent recording was then stored separately from the interview recording. Service users were offered a £10.00 voucher for each interview completed. All interviews were between 20 and 60 min (average of 50 min) in length and were transcribed in full for analysis purposes.

Recruitment

Recruitment of FWS therapists involved the FWS project lead sending an invitation to all appropriate staff. To recruit wider healthcare professionals, FWS therapists were asked to provide contact details of relevant healthcare professionals (those who were aware of the FWS) for the evaluation team to invite. Any service user aged 16 + years who had received support from the FWS was eligible to take part. Service users were invited (via FWS therapists) by being asked to complete an Agreement to Contact form to receive further information about the evaluation. Posters about the evaluation were also displayed in key locations (e.g., neonatal unit, location where therapy or group support was provided) for service users to contact the evaluation team directly.

On all occasions, participants received an invitation email, an information sheet, and a consent form, and asked to respond to the evaluation team within two weeks if they wished to participate (with reminders issued ~ 3/4 weeks later).

Qualitative data were analysed using a reflexive thematic approach [ 24 ]. This involved the first and second authors creating an initial coding framework using MaxQDA qualitative software. The second author then continued to use this framework to code the remaining documents with codes added, re-named, or merged as appropriate. All the authors reviewed and agreed on final analytic decisions.

Reflexivity

All authors have a psychology-related background. The lead author has over 20 years of undertaking research with perinatal populations, and the other two have been undertaking research in this area for ~ 5 years. All the authors are parents. All authors consider that emotion-based support for parents who have faced these adverse situations is crucial due to the potential for negative impacts on parents, infants, and families. The second author who was responsible for data collection and analysis had experienced neonatal care with her first child and had previously worked as a volunteer with the charity. Care was taken to ensure that this prior relationship did not overtly bias data collection, or the interpretations generated – this was achieved through working closely with the project lead (first author) to review the transcripts and when analysing the data set. As listening to others’ experiences of neonatal care could trigger personal memories, regular check-ins were provided by the project lead for reflection and sign-posting purposes.

Ethics approval for this study was received from the Health ethics committee at the University of Central Lancashire (project no: 0262). All participants received a detailed information sheet and provided informed consent. As it was recognised that the interviews could elicit upset, a distress protocol was developed. This involved advising participants (in the information sheet and verbally) that the interview would be paused should they become upset, and a decision made together about how to proceed. All service users were provided with contact details of organisations where they could seek further support as needed. All information sheets noted that confidentiality would be broken should experiences of harm (to self and others) be disclosed.

A total of 37 interviews with 35 participants were undertaken, 35 interviews were completed via Microsoft Teams and two interviews were audio-recorded telephone calls. Participants included eight FWS staff, 11 healthcare professionals and 16 service users (of whom two were interviewed twice). The demographics and characteristics of service users are displayed in Table 2 .

All service users identified as female and were aged between 25 and 40 years, with a mean age of 33. Most service users were White British or White British American ( n = 14, 87.5%), over half were married or in a civil partnership ( n = 11, 62.5%) and the rest were single ( n = 6, 37.5%). The age of the service users’ youngest child ranged from 10 weeks to 4 years (with the average child age being 15 months). Reasons for referral varied and were due to several different types of adverse neonatal experiences or perinatal loss (see Table 2 ). The types of support that the service users received are detailed in Table 3 . These data highlight that one service user had only received ad hoc support on the neonatal unit; the remainder had all received more prolonged support via one-to-one or group-based therapeutic support (four of whom also had received ad hoc support at the neonatal unit or specialist clinic).

The FWS staff interviewed included seven psychological therapists ( n = 7) and the project lead. Healthcare professionals who participated in an interview held different roles including neonatal nurses, ward managers and sisters, education leads and mental health neonatal nurses. The healthcare professionals’ length of service ranged from 9 months to 14 years.

In the following sections, we present two themes and associated sub-themes. The first theme - ‘creating time and space for support’ - details the informational, contextual, and relational basis of the FWS service, as well as barriers to service delivery. The second theme - ‘making a difference’ - describes the cognitive, emotional, and interpersonal benefits of the FWS for service users. Illustrative quotes are included with identifiers that use the abbreviations SU – service user, FWSS – Family Well-being service staff, or HCP – healthcare professional. Additional identifiers that signify the type of support the service user received are also included using the codes A (ad hoc support), G (group counselling) and O (one-to-one therapy).

Creating time and space for support

In this section, we describe how the FWS therapists worked to facilitate time and space for therapeutic support across six sub-themes - ‘ tailoring the communications’ , ‘a flexible and proactive approach’ , ‘being listened to without judgement’ , ‘independent from others’ , ‘not just about the baby’ and ‘ shared experiences’. A final sub-theme reports on the ‘barriers to service delivery’.

Tailoring the communications

FWS staff used various communication modes - verbal, leaflets, email, telephone, or text – to inform and communicate with service users. Some service users spoke positively about the incremental information received and how valuable it had been to tell them ‘everything I could expect’ (SU4:O&G): this, together with the perceived ‘ non-pushy’ approach of the FWS staff enabled them to make their own decisions and to access the support on their terms, ‘I just read through it [ leaflet] because it wasn’t kind of like it straight away , we’re gonna refer you. They said have a think’ (SU16:O). Another service user reported:

It was a lot of like, what’s gonna fit for me really. Like I wasn’t just kind of told, this is what you’re going to do and that kind of thing. Like, every step of the way I was asked, like, do you want to do this? Do you want to try this? You know, do you think that would work for you? And it felt really personal. (SU4:O&G)

Service users also appreciated the immediacy of contact from the therapists, ‘found it really good , they contacted me really quick’ (SU9:O), once a decision to receive support had been made.

A further means by which FWS staff helped to tailor communications and support service user engagement was via data sharing. Several service users highlighted the benefits of the FWS staff sharing their information with others in the service, thereby mitigating the need for repeating painful accounts:

She [FWP therapist] was aware that I was gonna be contacting. I think it is helpful that they already knew my background because it can avoid questions that you don’t particularly want to answer, or things that you don’t want to have to repeatedly go over. (SU3:G)

Those receiving ad hoc support were all encouraged to take up formal therapy following infant discharge. However, the therapists also offered a text message contact for service users who were not receptive to receiving more prolonged therapeutic support during their infant’s neonatal stay, e.g., ‘six weeks after you’ve been discharged just to check in’ (FWSS1). For some, this delay in service offer was considered ‘perfect’ as it meant that they accessed support that they ‘would not have accessed’ but has ‘ helped me no end’ (SU7:A&O). Although one of the FWS staff reflected that whilst this follow-up approach was not always successful, it provided ‘peace of mind’ (FWSS5) to know that it had been offered.

A flexible and proactive approach

Participants who accessed different forms of therapeutic support from the FWS spoke very positively about the flexible and proactive nature of the service. Proactive ad hoc support on the neonatal unit enabled service users to receive support while being with their babies. Healthcare staff felt parents were unlikely to prioritise their own mental health needs when ‘all they are concerned about is the baby’ – proactively approaching them ‘ where they are’ was therefore perceived to be the ‘best way of doing it by far’ (HCP8). Ad hoc support was also considered important in preventing service users from ‘slipping through the net’ (HCP5) by expecting them to join a waiting list for an appointment that they then decide not to access.

Flexibility in how the one-to-one therapy was provided (i.e., by telephone or face-to-face) was highly appreciated. Telephone appointments were valued for practical reasons such as childcare - ‘I can’t attend in person with two children ’ and wider work commitments. Accessing support from home also allowed service users to feel comfortable in their own space, which in turn enabled them to be more open with their therapist:

You’re in your space. I was comfy, I had my coffee and then I just felt like, I don’t know if I’d have opened up so much if I was in a room and it felt like counselling, like therapy (SU6:O).

Flexibility in service users being able to change appointments, ‘they changed every appointment that I needed changing […]it was brilliant’ (SU1:O) or delaying appointments ‘she didn’t mind me texting and saying I’m running 5–10 minutes late ’ (SU6:O) was highly valued. Service users also appreciated the freedom to go at their own pace: ‘if you wanted to contribute [during the group counselling], you could do , if you didn’t , you didn’t have to ’ (SU10:O&G). One service user reflected on how this personalised approach stimulated reciprocity in terms of individuals being able to ‘get out’ what they ‘put in’ (SU15:G). This flexibility was also echoed in the bereavement groups, with the discussion topics being based on the needs of the group rather than a prescribed plan:

[Group therapists] had something as sort of an idea for each session but they would always ask if there was anything that we as a group or individually wanted to focus on or cover. (SU3:G)

Being listened to without judgement

Service users repeatedly spoke of how much they valued feeling ‘heard and listened to and valued’ (SU5) by the FWS therapists; with these accounts provided by service users who had received ad hoc, one-to-one, or group-based support. One service user also felt that while the therapist was ‘paid to listen’ it was the fact that she seemed to ‘want to listen’ that made a difference (SU1:O). Several service users reflected on how the therapists’ active listening and person-centred non-judgmental approach meant they ‘ found her really easy to talk to , it’s a really good relationship’ (SU12:A&G), and was someone who they ‘could be completely open with’ (SU6:O):

The most helpful thing is having someone to listen to me and that has no judgment whatsoever, I have to say when I went on, she was calm, she was soothing and never felt one bit of like, oh my God, I can’t believe that’s happened […] There’s no judgment, […] she was there for me and only for me. (SU14:O)

Feeling listened to and having a good relationship with their therapist gave service users a sense of being ‘wholly seen’ and a safe space to be ‘able to feel safe and valued and respected’ (SU5:A&O). Some service users described how it was like they were talking to a friend who was ‘there for me ’:

It was just like talking with an old friend, if you know what I mean. And even though I’ve never met the lady before, she was very friendly […]. So it was nice. (SU13:O)

Independent from others

Whilst service users appreciated the friendliness and authenticity of their therapist, they also talked about how helpful it was to receive regular support from the same therapist who was independent of friends, family, and healthcare professionals. Several participants who received one-to-one or group-based support considered this to be helpful as it meant they could openly share how they felt without feeling like a burden:

I was really worried that when I was talking to like my husband or my mum and my sister or anything that that I was saying was just going to end up upsetting them and having someone to talk to or just felt like I can say whatever I want, […] Like it’s not gonna ruin their day, I can just say what I want, it was just so helpful really (SU4:O&G).

The positives of the therapists being separate from clinicians were related to challenges in the relationships between healthcare providers and parents due, e.g., to life-saving care being administered to their babies which was uncomfortable to watch:

So, it’s quite nice that they have that extra person to talk to who isn’t the person that just stuck a gastric tube down your baby and made him cry or, you know, or that just cannulated your baby (HCP1).

Healthcare professionals also spoke of how parents could attempt to ‘hold it together’ during interactions with healthcare staff, due to not wanting to give the ‘impression that they’re struggling’ (HCP6). Support from an ‘outsider’ perspective was therefore perceived to be crucial in breaking down these barriers and offering dedicated needs-led support.

Not just about the baby

Another reason service users felt they could talk openly about their feelings and experiences was due to the support being focused on their needs as individuals, rather than being about the baby, or being a parent:

It helped me in a lot more ways as sometimes it was nothing to do with being a mum or [baby] and yeah, it just worked really well’ (SU6:O).

Service users acknowledged the need to process their negative experiences but also the necessity of talking about other things that were affecting their mental health and their ability to cope:

I had to grieve with what had happened in the past. Cause normally I just push everything down and deal with it, I just get on with the next day. So, we [therapist and service user] went backwards for me to be able to move forward. (SU14:O)

‘My helping hour’ (SU6:O) as one service user who had received therapy described, and mirrored in others’ narratives, related to how much they appreciated and looked forward to taking time out each week to think about their needs:

When you’ve got a newborn and you’re wrapped up with, especially with someone with a condition and wrapped up with a feeding schedule, medicines, nappies, sleepless nights, blah blah, blah blah blah. I would never have then thought, you know what? Let’s take care of you. Let’s have an hour that’s just for me. (SU7:A&O)

Shared experience

Some service users who received support on an ad hoc, one-to-one or group basis spoke of how receiving support from a therapist who had faced a similar experience had ‘definitely helped’ . One pregnant service user who had had a previous miscarriage reported the benefits of receiving one-to-one support from a therapist who had faced their own experiences of infertility and subsequent in vitro fertilisation:

She’d gone through pretty much a very similar experience to me. She’d had very similar infertility issues, and she’s also gone through losses herself. So, it was easy to bond with her very quickly because you do when someone’s gone through that same experience (SU11:O).

Others referred to how receiving support from therapists who had ‘been through it all the same’ (SU1:O) helped them to feel ‘normal’ and ‘I wasn’t being dramatic or crazy’ (SU8:A). Whereas for others, it was receiving support from a therapist who understood the realities of parenthood that mattered:

Motherhood is hard, you know, like and my counsellor was a parent as well, so really helped to, like, justify those feelings are rational and just rationalise. (SU5:A&O)

Opportunities for group support also enabled service users to normalise and validate their experiences ‘with other people who have all gone through the same thing and have the same feelings ’ (SU4:O&G).

Barriers to service delivery

Overall, there were some challenges and barriers reported in relation to communication, access, and service delivery. First, in relation to communication, some service users referred for one-to-one or group support complained about a lack of information about when it would be received:

So, it was a bit frustrating waiting and not knowing whether it was then gonna be like weeks and weeks, or months, or whether it was gonna be like a few days. (SU4:O&G)

Several service users also described communication difficulties about the delay in follow-up after the initial assessment (when referred for formal therapy). This delay meant they had to ‘unravel’ the ‘worst parts you are struggling with’ and then ’putting the phone down’ with ‘no follow-up plan or coping mechanisms’ in place (SU10:O&G). The gaps in support provision were also expressed from within the service: ’it’s not great , because those mums and dads are waiting , and they’ve reached out , and that’s when they need the help ’ (FWSS7).

Despite the benefits of ad hoc support, access-related issues were raised about therapists being unable to provide support for practical as well as emotional-based reasons. From a practical perspective, the therapists only had limited time on the units which meant ‘some people may not see her’ (HCP1), and if parents did not live in the catchment area, then support could not be offered. Healthcare staff were not always notified about the FWS therapists’ availability at the unit. This information was considered important to ensure effective signposting to, ‘just to say to a parent , well if you want to speak to anybody , we’ve got our counsellor in on such-a-day’ (HCP6). From an emotional perspective, it was recognised that therapeutic support was not suitable for all, such as those ‘who are very closed down’ (FWSS1) or ‘scared’ of disclosing negative emotions particularly ‘the ones where there are social issues’ (HCP6).

Regarding service delivery, while several service users made positive comments about the flexible nature of support, in terms of access, delivery and amount received, some wished the sessions had been longer. One also spoke of an ‘awkward finish’ when the one-to-one sessions were ending:

[So, it can be like] ohh sorry, I think I’ve lost track of time a little bit, I think we’re gonna have to pull it up there and we’re gonna have to end. So, I’ll be like, alright, OK, right, yeah fine. And it can be a bit clunky in the way that it finishes rather than it drawing naturally to a conclusion. (SU10:O&G)

Making a difference

In this section, we describe service users’ reflections on the psychological, cognitive, behavioural, and social benefits of FWS support. Four sub-themes are detailed - ‘tools for positive coping’ , ‘enhanced well-being’ , ‘improved relationships with others’ and ‘confidence in returning to work’ .

Tools for positive coping

Several service users described how the therapeutic tools they were taught as part of their therapy sessions either on the ward, one-to-one, or in the group provided positive coping mechanisms to help with ongoing adversities: with one describing them as a ‘ toolbox’ to draw on when needed (SU4:O&G). The techniques were reported to have helped them understand and articulate how they were feeling, ‘to unpick , how it was that I was feeling what I was struggling with (SU10:O&G) and the breathing and distraction techniques enabled them to ‘stop blaming myself and start breathing’ and to ‘do something else to try take my mind off it’ (SU2:O). Other service users referred to how the support had helped them to know ‘more about their triggers’ which helped them to feel strong and to retain a sense of control during uncontrollable and uncertain situations:

The tools just to step back and be like right, […] write down everything I can’t control and everything I can control of what my memories are and then cross everything I can’t change. Like I can’t control how sick she is. I can’t control her temperature, but what I can control is her feeds and being her mum and stuff like that […] They made me feel the strength that I’ve not felt in about 5 years. (SU5:A&O)

The therapeutic techniques provided by the therapists were an ongoing source of support to help service users in the extreme circumstances of the neonatal unit as well as in day-to-day life:

I relied on one of the meditations she sent me, and it just really, really centred me at night, even as I was feeling overwhelmed, just like putting my headphones in and just saying to my husband, if he wakes up and you just see to him, and that just helped me so much. (SU6:O)

Enhanced well-being

Many service users described how the FWS support had improved their psychological well-being, using terms such as feeling ‘lighter’ , more ‘optimistic’ and a ‘stronger person’ . Some service users referred to how the therapist had provided important crisis management. For one participant who received one-to-one therapy, this related to how the support helped to ‘pull her back’ from an emotional crisis each week, associated with the threats of a further potential pregnancy loss:

If I didn’t have [therapist] once a week, I dread to think where I would have been. It was kind of like, yeah, like each week she’d pull me back in, and then I’d probably go a bit crazy again, and then she’d pull me back in. (SU11:O)

Others described fundamental changes such as moving from a state of being unable to ‘ function properly’ to being back at work and ‘happy and getting on’ and feeling ‘like a different person ’ (SU4:O&G). Another service user also described how the one-to-one therapy had improved her well-being after a traumatic birth and neonatal stay to such an extent that she had become ‘ a better version’ of herself:

I just literally feel like me again, I suppose I think you just get so wrapped up with being mum and just being on all the time and as a mum you do normally lose your confidence and you do lose yourself so it’s more like feeling like me but even a better version that I liked of me. (SU6:O)

Improved relationships with others

Service users who received one-to-one or group-based support talked openly about how their relationships with their partners and family had been enhanced due to the support the FWS had provided. One reported how the support had helped her and her husband to ‘communicate with each other’ and ‘discuss how we were both feeling ’ (SU15:G). Another service user shared how the one-to-one telephone therapy had restored her relationship with her mother:

I don’t know what magic she’s done but my mum and my relationship it’s been really good to a point where before I couldn’t wait to get my mum out of my house, but now, it’s kind of like mum I need you and I appreciate you (SU16:O).

A further way the FWS support influenced relationships with others was regarding a future conception. While following a traumatic birth, neonatal stay or loss of a baby, individuals can be hesitant to have more children [ 25 ], the FWS was reported to have helped service users’ address these concerns. Bereavement group participants also reported finding hope for future family planning together, thereby enabling a futural peer support element to the therapeutic intervention:

Hopefully, we’ll be able to support each other, hopefully in the future through future pregnancies. Like it’d just be amazing if we all managed to get pregnant together and had our babies together that’d just be unbelievable. (SU15:G)

Confidence in returning to work

Service users who had received one-to-one support reflected on how the support had helped them to address their anxieties in returning to paid employment:

[Baby] is going to nursery that was quite triggering […] And I think if I had to deal with that a long time ago, like a few months ago, I’d have just blow my head there, I just couldn’t have done that. But now, I’ve just been, like, really calm and just quite open to it and just, sort of kept my cool really. (SU6:O)

Another service user who had experienced a neonatal loss reported: ‘ If I hadn’t had had the support I wouldn’t have gone back to work and I’d probably be in a much darker place’ (SU13:O). This woman reflected that working was positive for her emotional well-being, and how this would not have been possible without the support from the FWS.

In this paper, we present findings from an evaluation of a charity that provided ad hoc support, formal therapy and group support to service users who had a premature and/or sick infant or who had suffered a perinatal loss. We highlight the informational, contextual, and relational basis of how the support was experienced, and the cognitive, emotional, and interpersonal impacts of the FWS for service users. The findings of this paper contribute to the evidence supporting the need for emotional and psychological support for those who experience adverse maternity and neonatal outcomes in the perinatal period [ 3 ]. Overall, there appear to be key mechanisms - defined as the entities or activities responsible for the phenomenon (i.e., positive experiences and impact of FWS support) [ 26 ] – that underpinned effective support, irrespective of whether it was delivered on a one-to-one or group basis. These mechanisms include clear information, flexibility (in access and/or delivery), being independent of statutory provision, focused on individual needs, active listening, the use of therapeutic tools, and positive relationships with the therapist. Furthermore, while ‘ shared experiences’ are a key mechanism of group-based support, this was also evident in one-to-one therapy when service users received support from a therapist with a shared history.

A number of our findings echo those reported in a recent qualitative systematic review of women’s experiences of specialist perinatal mental health services [ 22 ]. Similar findings concern the importance of the therapist-service user relationship, with the therapist’s open, non-judgemental, and person-centred approach found to be essential to meaningful service experiences [ 22 ]. As reported in the review, and in our study, continuity was a key feature of relationship building that engendered safety and dependability [ 22 ] and for meaningful change. While some of the included papers in the review reported how women felt clinicians had real insight and understanding of perinatal mental health conditions [ 27 , 28 , 29 ], in our work, this also related to the therapists sharing their personal experience of perinatal mental health and/or loss. These findings resonate with those by Cleary and Armour who explored the dual identity of counsellors and therapists with experiential experiences of mental health issues [ 30 ] whereby self-disclosure enhanced the therapeutic relationship. They also concur with a qualitative study by Parker et al. who found counsellors having a working knowledge of neonates and the neonatal environment was crucial [ 31 ].

Similar to the wider literature, we found that service users benefitted from receiving support independent of health care and focused on their needs as individuals [ 32 , 33 ]. This finding further supports the need for independent specialist support such as provided within the UK-based specialist perinatal mental health and maternal mental health services [ 3 ]. While specialist mental health support has been found to help service users understand their infant’s needs and develop parent-infant relationships [ 22 , 27 , 34 ], in our study, the benefits were more individualised and included enhanced personal and social well-being. Our findings of the positive impacts of group-based support also align with the wider literature regarding the value of receiving validation and reassurance from peers with shared experiences [ 29 , 35 , 36 ], as well as opportunities for ongoing social support after the groups had ended [ 35 ]. The benefits gained via support from the therapists and within the groups signal post-traumatic growth described as “positive psychological change experienced as the result of the struggle with highly challenging life circumstances” [ 37 ]. This was evidenced through women feeling stronger, developing new relationships, more able to cope with future adversities and with a new and improved outlook on themselves and their situation [ 37 ].

Flexibility in rearranging appointments and the location of support being organised to suit individual service users encouraged access and an openness to share personal issues [ 22 ]. While complaints have been reported in the previous literature about service users being unaware of wider support provision and a lack of follow-up support [ 22 , 36 ], in our study, we found that tailored information and communications provided at multiple points helped facilitate engagement. Although resource-related challenges concerning the availability of the therapists on the unit and a lack of communication as to when this support was available were noted. A further difficulty related to the reported time lag following an initial assessment: this signifies a need for ongoing contact to ensure service users gain access to the right support at the right time [ 38 ]. Proactive support is a central tenet of emotional-based care [ 39 ]. This was clear in our study as the proactive nature of the support was essential to provide parents with care at a harrowing time and to facilitate access to more structured support post-infant discharge. However, as some service users can be reluctant to disclose perinatal mental health problems, due to feeling overwhelmed or potential fears of stigma and negative reprisals [ 40 ], alternative methods to ensure that all parents receive timely support is needed. Furthermore, despite service users from minoritised ethnic communities being at increased risk of poor perinatal mental health [ 41 , 42 , 43 ], they are less likely to access support [ 40 , 43 ]. A recent systematic review to explore the reasons why minoritised ethnic women do not access mental health services identified barriers at the individual (stigma, lack of awareness), organisational (inadequate resources), sociocultural (language, cultural barriers) and structural (lack of clear policies) levels [ 44 ]. Therefore, while approaching parents in the neonatal unit may help to overcome some of these barriers, further work to elicit if and how this can influence access to specialist support amongst ethnically minoritised service users is needed.

The limitations of this study are that overall, only ~ 30% of service users who accessed one-to-one therapy consented to share their demographic and outcome data for the evaluation. However, typically studies involving mental health intervention have difficulties with recruitment and retention of participants and often achieve very low response rates [ 45 ]. It also suggests that further work on how to encourage consent and provide reassurance about how their data will be used may be needed. The intention was to interview ~ 20 service users, with only 16 recruited, despite numerous recruitment efforts. This may be due to asking service users to participate while still receiving support, and indicates that other potentially more sensitive methods, such as writing to participants after they have ended support with the FWS may have been more successful. Also, while all service users had the opportunity to be re-interviewed ~ 6 months later, only two took up this offer – both of whom had received one-to-one therapy. This low take-up may be due to symptom resolution or symptom continuation, both of which could be associated with concerns for re-triggering or magnifying negative emotions. More flexible ways, such as using a journal, may encourage long-term qualitative insights to be captured. A further limitation is that over 30% of the participants had received more than one type of support and any nuances in the experiences of the different support options were not fully explored in the interviews. Most of the participants were from a White demographic background, which may reflect wider barriers to access to mental health support in ethnic minority populations [ 40 ]. We also intended to interview more healthcare professionals, and the small number recruited is likely indicative of busy, time-poor professionals. Future research could include focus groups incorporated as part of existing professional-based meetings to maximise participation. However, despite the recruitment challenges, a total of 35 participants is a large sample for qualitative research, and generated rich, in-depth insights into the views, experiences, impacts, facilitators, and challenges associated with the FWS.

This study describes how psychological support was provided for service users experiencing adverse maternity and neonatal outcomes and the impact of this support on individual and familial well-being. This work complements existing research into perinatal counselling-based interventions and highlights the value of providing therapeutic support during a sensitive time. Despite study limitations, the findings signify the need for independent, timely, flexible, needs-based, proactive, well-resourced psychological-based support. They also emphasise how the therapists’ open and non-judgmental approach and experiential knowledge are essential mechanisms of meaningful service provision. Implications for practice concern better communication regarding support availability, and timely follow-ups. Further means to engage those less willing to take up mental health support and who may have greater needs should be developed.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

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Thanks to all the participants for their time and invaluable contributions.

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GT was project lead who designed the original study, with support from RN. LN conducted interviews. LN and GT developed a coding framework which was applied to the transcripts by LN. All authors reviewed analyses and agreed final analytical decisions. All authors read and approved the final manuscript.

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Thomson, G., McNally, L. & Nowland, R. Experiences and impacts of psychological support following adverse neonatal experiences or perinatal loss: a qualitative analysis. BMC Pregnancy Childbirth 24 , 569 (2024). https://doi.org/10.1186/s12884-024-06713-7

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Rural comprehensive cancer care: Qualitative analysis of current challenges and opportunities

Affiliations.

1 Department of Community and Behavioral Health, College of Public Health, University of Iowa, Iowa City, Iowa, USA.
2 Department of Internal Medicine, Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA.
3 Holden Comprehensive Cancer Center, University of Iowa, Iowa City, Iowa, USA.
4 Tippie College of Business, University of Iowa, Iowa City, Iowa, USA.
5 Department of Surgery, Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA.
6 Department of Internal Medicine, Division of Hematology, Oncology and Bone Marrow Transplantation, University of Iowa Carver College of Medicine, Iowa City, Iowa, USA.
7 Department of Pharmacy Practice and Science, College of Pharmacy, University of Iowa, Iowa City, Iowa, USA.
8 Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, Iowa, USA.
9 Iowa Cancer Registry, College of Public Health, University of Iowa, Iowa City, Iowa, USA.
PMID: 38753418
DOI: 10.1111/jrh.12842

Purpose: While limited resources can make high-quality, comprehensive, coordinated cancer care provision challenging in rural settings, rural cancer patients often rely on local hospitals for care. To develop resources and strategies to support high-quality local cancer care, it is critical to understand the current experiences of rural cancer care physicians, including perceived strengths and challenges of providing cancer care in rural areas. METHODS: Semi-structured interviews were conducted with 13 cancer providers associated with all 12 non-metropolitan/rural Iowa hospitals that diagnose or treat >100 cancer patients annually. Iterative thematic analysis was conducted to develop domains.

Findings: Participants identified geographic proximity and sense of community as strengths of local care. They described decision-making processes and challenges related to referring patients to larger centers for complex procedures, including a lack of dedicated navigators to facilitate and track transfers between institutions and occasional lack of respect from academic physicians. Participants reported a desire for strengthening collaborations with larger urban/academic cancer centers, including access to educational opportunities, shared resources and strategies to collect and monitor data on quality, and clinical trials.

Conclusions: Rural cancer care providers are dedicated to providing high-quality care close to home for their patients and would welcome opportunities to increase collaboration with larger centers to improve coordination and comprehensiveness of care, collect and monitor data on quality of care, and access continuing education opportunities. Further research is needed to develop implementation approaches that will extend resources, services, and expertise to rural providers to facilitate high-quality cancer care for all cancer patients.

Keywords: cancer; community; qualitative research; rural hospitals.

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Published: 26 August 2024

Health care needs and barriers to care among the transgender population: a study from western Rajasthan

Tanvi Kaur Ahuja 1 ,
Akhil Dhanesh Goel 1 , 2 ,
Manoj Kumar Gupta 1 , 2 ,
Nitin Joshi 1 ,
Annu Choudhary 1 ,
Swati Suman 1 ,
Kajal Taluja 1 ,
Madhukar Mittal 3 ,
Navdeep Kaur Ghuman 4 ,
Navratan Suthar 5 &
Pankaj Bhardwaj 1 , 2

BMC Health Services Research volume 24 , Article number: 989 ( 2024 ) Cite this article

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Transgender people comprise an estimated 0.3–0.5% (25 million) of the global population. The public health agenda focuses on understanding and improving the health and well-being of gender minorities. Transgender (TG) persons often have complex healthcare needs and suffer significant health disparities in multiple arenas. The international literature suggests that this community is at a higher risk of depression, and other mental health problems, including HIV. Many transgender people experience gender dysphoria and seek specific medical needs such as sex reassignment surgeries, implants, hormonal therapies, etc., but are unable to access these services due to financial or social reasons. The objective of this study was to assess the healthcare needs and associated barriers experienced by transgender people in Western Rajasthan. Methodology: A qualitative study was carried out in which multilevel stakeholder interviews were conducted using interview and focus group discussion guides. Data was analyzed using the qualitative thematic analysis technique. Results: Findings reveal that transgender people have expressed their need to access health services for general health needs, including but not limited to mental health, non-communicable diseases, and infectious diseases. Barriers to healthcare services were identified on 3 levels: health system, social and personal. Health system barriers include policy, accessibility, affordability, and acceptability issues. Social factors such as inadequate housing, education, and job opportunities also play an important role in affecting the individual’s health-seeking behavior. The knowledge of healthcare providers in this context was also limited in context of health insurance schemes, package of services available for transgenders and the importance of gender sensitive healthcare. Conclusion: Transgender people expressed the need for mental health services, programs targeting nutritional improvement, gender-affirmation procedures besides regular screening of non-communicable diseases as operational for males and females. Levels of barriers have been identified at various levels ranging from absence of targeted policies to individual behavior.

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Introduction

Universal Health Coverage (UHC) means that all people have access to quality healthcare services (service coverage) without any financial hardships (catastrophic health expenditure) [ 1 ]. To achieve UHC, National Health Policy 2017 projects to increase the government’s health expenditure to 2.5% of GDP by 2025 [ 2 ]. In alignment with this objective, the budgeted health sector spending has increased from 1.3% (2019-20) to 2.1% of GDP (2021–2022). According to National Health Accounts 2018-19, Out of Pocket Expenditure per capita (in Rupees) is 2155 [ 3 ].

Incidence of catastrophic health spending is felt at a higher rate by vulnerable communities due to gender, socio-economic position, disability status, or sexual orientation, besides other characteristics. The Transgender (TG) community is one such community whose gender expression (masculine, feminine, other) differs from their assigned sex (male, female) at birth. They can be identified as trans-man or trans-woman [ 4 ]. In the Indian context, transgender individuals identify themselves differently including Hijras, Aravanis, Kothis, Jogtas/Jogappas, and Shiv-Shakthis. For the first time, this population was included in India’s 2011 census. Reports suggest that 4.8 million Indians identified themselves in the ‘other’ category.

Recent legal and policy changes in India have significantly affected gender-diverse communities. The Transgender Persons (Protection of Rights) Bill formulated in 2014 went through changes over a period of 5 years and was finally declared an Act in 2019. The Act highlighted the need to prohibit discrimination including denial of service or unfair treatment in relation to healthcare [ 5 ]. With respect to UHC, there are evident disparities in service coverage across the transgender population [ 6 ]. Transgender persons face a disproportionate burden of certain diseases, including HIV, viral hepatitis, and other sexually transmitted infections. They also pose a higher risk for mental health issues or substance abuse. Literature also suggests that transgenders may seek gender-affirming health services apart from general healthcare services. This might involve counseling support for themselves and their family related to gender id entity or undergoing gender transitioning procedures and surgeries. Transition-related treatment may include cross-sex hormonal therapy, hair removal, and gender-affirming surgeries.

In India, there are significant disparities in the availability and accessibility of healthcare. Existing research has identified various challenges and barriers encountered by transgenders in accessing and navigating the healthcare system. These include a lack of provider expertise in transgender care, the gap in health systems delivery mechanisms, lack of culturally sensitive healthcare training, inadequate financial coverage or low socio-economic condition, and poor community health-seeking behavior [ 7 ]. Rajasthan is one of the high focus states under the National Health Mission [ 8 ]. Since Western Rajasthan is a desert area, healthcare becomes even more challenging [ 9 ]. It further causes adverse impact on the desire and ability of transgender people to access healthcare. Poor healthcare access and health outcomes among the transgender population can also be attributed to lower levels of health literacy [ 10 ]. Rajasthan is one of the states with the lowest literacy rates among the transgender population [ 11 ].

In order to improve the health of transgenders and address the barriers to healthcare, it is crucial to identify the health priorities. A growing body of research regarding the healthcare experiences of transgenders exists worldwide, but there is still a paucity of research in the Indian context. This study has been conducted with the aim of reviewing the health issues and challenges faced by them in the existing healthcare system in Western Rajasthan. Although behavioral and social factors play a pivotal role in transgender health, this research focused on health needs and healthcare system-related barriers and challenges.

Research questions:

What are the basic health needs of the transgender community?

What are the barriers they encounter in the process of obtaining healthcare services?

How are the experiences of transgender persons in healthcare facilities?

What is the level of knowledge among healthcare providers regarding health of transgender persons?

How can healthcare services be enhanced for the transgender population?

Methodology

The study was conducted in the state of Rajasthan during the year 2022.

Research Design: This study utilizes a descriptive qualitative research design to allow in-depth insight into the existing health-related needs of transgender persons, their experiences in healthcare facilities and the barriers they encounter in meeting their needs. The study was approved by the Institutional Review Board of All India Institute of Medical Sciences, Jodhpur in July 2022.

Setting: The study was conducted in a community-based organization.

Sampling and sample size: Purposive sampling was utilized for this research. Transgender people above or equal to 18 years of age residing in different geographical region of western Rajasthan were approached with the help of established Civil Service Organizations (CSO). People who responded back were included in the study.

Data collection: All recruitment and data collection procedures were completed by public health scholars trained in research under the supervision of a community medicine professor. Multi-stakeholder interviews were conducted. It includes identification of relevant stakeholders to understand facilitators and barriers of the topic of interest. The identified stakeholders included specialist healthcare providers, representatives of civil service organizations and transgender persons (target population). All the individuals who agreed to participate in the study were approached by the interviewer. They were explained the purpose of the study and an appropriate time was decided to ensure active participation. This was also done keeping in view the sensitivity of the subject matter. All the interviews and the focus group discussion were conducted face-to-face in English and translated to Hindi for participants who did not understand English. Key informant interviews ( n = 7) of specialist healthcare providers central to providing transgender care were conducted. The specialists included of a psychiatrist, plastic surgeon, endocrinologist, gynecologist, and community medicine experts. All interviews with specialist healthcare providers had a duration of 20–30 min. Transgenders residing in different geographical region of western Rajasthan were invited for a focus group discussion (FGD). Informed consent was taken from all the study participants who agreed to participate in the study. Audio and video recordings were done for focus group discussion as well as key informant interviews. The focus group discussion lasted for 2 h. Apart from this, CSO representatives were also interviewed ( n = 3) i.e., a nurse, social worker and the administrative head of the organization. Data was collected over a period of 2 months.

Before the focus group, socio-demographic data was recorded, including age, gender, education, and income. An FGD guide and interview schedules were prepared and used for focus group and key informant interviews, respectively. They were designed to cover information about:

Knowledge and experience on transgender issues.

Challenges in providing transgender care.

Methods for improvement of the healthcare system.

Analytic approach: Audio-recorded focus group data and key informant interviews were transcribed and translated into English by four researchers. The data obtained through key informant interviews were also transcribed. The data was analyzed manually using thematic analysis. The available data was actively and repeatedly read to familiarize and valuably orient towards the available raw data. Subsequently, codes were identified using an inductive approach i.e., they were reflective of the issues that were apparent in the data and were not dependent or guided by any existing theoretical frameworks. In the next step, themes were constructed by analyzing, combining, and comparing codes. The developed themes were such that they reflected the significance of the entire dataset. Lastly, the themes were reviewed, defined, and named, along with the identification of narratives that justify and explain all the mentioned themes. In the final stage of analysis, the identified themes from the coded data were used to construct a framework using grounded theory approach such that it accurately represents a concise picture of the data.

Ethical considerations: Confidentiality emerged as an ethical concern in this study. All transgender individuals were provided with detailed information about the purpose, procedures, potential risks, and benefits of research. Participants were ensured that their participation was voluntary, and they had the right to withdraw at any time without consequence. All data and identifying information collected during the discussion was restricted to the research team and anonymized to prevent identification of individual participants.

A total of 12 transgenders participated in the FGD. Their socio-demographic characteristics are summarized in Table 1 . All Participants in the study belonged to Rajasthan, India. Eleven out of the total 12 participants self-identified themselves as transgender woman. The mean age of transgender individuals who participated in the study was 23.8 ± 3.6. The selected cohort represented a range of educational qualifications from secondary school to post-graduation. The majority of the participants were employed, but none was employed in the government sector. More than half of the participating individuals had an income of less than INR 10,000 (66.7%) (Table 1 ).

Health needs of the transgender community

The need for regular screening of non-communicable diseases at peripheral healthcare centers was expressed by the transgender participants. Lack of accessible and/or affordable health services and social barriers contribute to anxiety and depression among them, which further leads to their inability to control the use of tobacco and alcohol. This indicates the need for mental health support tailored specifically for this population.

Healthcare provider 1 (HCP-1) “ Gender dysphoria is diagnosed in later stages of life, late adolescence, or early adulthood because individuals are not able to seek help due to a lack of knowledge on available medical options and familial pressure.”

Specifically, they expressed the need for public healthcare facilities to provide gender transitioning procedures ranging from hormone replacement therapies to sex reassignment surgeries.

Figure 1 illustrates coding tree for health needs of transgender participants.

Coding tree for health needs of transgender participants

Barriers enumerated by transgenders in accessing healthcare services were segregated into personal, healthcare system and social barriers (Table 2 ).

Personal barriers

Transgender participants revealed a lack of awareness regarding the provision of transgender identity cards being issued by the Ministry of Social Justice and Empowerment. Moreover, the growing need was identified to educate them regarding their entitlements which may have implications on health. These include but are not limited to recognition of their gender identity, provision of medical facilities for their surgical and hormonal needs, and facilitation of access in hospitals and other healthcare facilities. (Transgender Act 2019)

During a key informant interview, one of the medical practitioners highlighted the need to introduce and explain the range of medical options available to transgenders for their transition.

HCP-2 “ Internationally, I have worked in fertility clinics. Before undergoing hormonal therapies or surgeries, transgender patients usually preserve oocytes and sperms to bear children in the future. The basket of available options must be known to the community. This also improves their quality of life.”

The health outcomes of an individual are dependent on their timely health-seeking behaviors. An interview revealed that many transgenders prefer the traditional removal method of male genitals rather than conventional gender affirming surgery. This reflects multiple dimensions such as lack of awareness regarding appropriate health practitioners and discrimination by the qualified professionals. Other underlying reasons for this include the lack of public hospitals providing these services and the unaffordable costs of surgeries. A study participant has also revealed being comfortable getting the surgery done by the ‘guru’ . Moreover, the distance between their households and healthcare facility makes it inaccessible for them.

Health system barriers

Both transgender persons and healthcare providers reported a lack of knowledge of any insurance schemes specifically for transgenders or insurance coverage for the minority population under the available schemes. Their awareness regarding the inclusion of gender-specific needs such as sexual reassignment surgeries or hormonal therapies in the existing insurance schemes was limited.

The study participants also addressed the need for the inclusion of a third gender column in the patient information / outpatient cards across all the hospitals. This is in alignment with the Transgender Persons (Protection of Rights) Bill, 2019, which prohibits discrimination against them in healthcare [ 5 ]. It would also lead to a transgender-inclusive environment in the hospital and greater acceptance by other people.

TG participant 7 “ Whenever we go to the hospital, we are asked whether to write male or female. There is no option of transgender in the OPD cards.”

In India, nationally recognized identity cards are being provided by the Ministry of Social Justice and Empowerment as a step towards mainstreaming their identity. One participant revealed that recently when she visited a hospital, the authorities denied accepting the TG identity card. This incident reflects the need of generating awareness across all sectors, including healthcare, to prevent the exclusion of transgender people in society.

TG participant 8 I had fever for a few days, I went to a hospital for treatment. I gave my transgender ID card issued by the ministry. They said this is not valid.

Accessibility

Majority of the participants revealed having negative experiences in healthcare settings. They reported that they had to wait very long to access health services.

One participant complained about the long counselling procedure and time to access hormone replacement therapy. Furthermore, many qualified practitioners discourage and demotivate the use of hormones. This reluctance among medical practitioners to prescribe hormones often compels transgenders to refer to the unfiltered content on the internet, resulting in the self-administration of hormones. Since transgenders are unaware of the side effects of unregulated dosages of hormones, it can result in adverse health outcomes.

Sometimes, the health facilities with available resources are situated far away from the residence of transgenders leading to difficulty in access. In one of the key informant interviews, a medical practitioner shared her experience with a transgender patient whose vaginal canal got stenosed as a complication of post Sex Reassignment Surgery (SRS). Since the health facility was around 500 km from her hometown, she could not reach the hospital on time.

Availability

One of the most significant barriers to healthcare reported by transgenders was a dearth of healthcare providers trained to address their specific health problems. Healthcare providers also emphasized the need for training to understand the best practices for their care. Some parts of clinical training should also include the importance and impact of physician-patient communication. The use of correct pronouns should be taught to collect sufficient and accurate information on their gender identity and thus, making the hospital settings friendly for them. Additionally, awareness sessions should also be conducted for medical professionals to make them comfortable and culturally competent while dealing with this section of society.

Some participants also shared that there is a need for designated facilities in healthcare, such as separate queues in OPDs and dedicated wards or beds in hospitals. It was felt that these facilities’ absence contributed to their fear and delay in access and utilization of desired appropriate care. Due to contributory social factors, such as real or perceived stigma, it is challenging for them to accommodate within the general ward. Medical providers had contrasting views in lieu of the unavailability of designated facilities. While most believed that providing separate queues and beds for them in hospitals was essential, one of the doctors felt this would promote social exclusion.

TG participant 1 Where should we stand in hospitals? Queues made for males or females? Separate beds shall be assigned for us so that we can access the services without hesitancy or fear of discrimination . HCP-3 Providing them separate facilities for all services cannot be the ultimate solution. Will this promote equity or rather advance social exclusion? We should think about it.

Moreover, there is a lack of specialist care in hospitals that are accessible to them. There is no provision to address transgender-specific health problems at the primary healthcare level. Lack of robust referral mechanisms leading to delayed or denied care was also reported.

Affordability

Transgenders are not registered and do not have access to benefits under the insurance schemes functioning in the country. All hospitals in the country do not provide gender transition services. Those services provided by the private sector often have charges beyond their paying capacity. As a result, accessing and affording healthcare becomes a challenge for them. This is one reason that urges them to go to unqualified traditional medical practitioners for gender transitioning surgeries or ‘Dai Nirwan.’

Breast augmentation is another common procedure utilized by transgenders. One participant discussed the availability of various implant materials and how their costs vary depending on the quality. Additionally, due to financial reasons and lack of awareness, low-quality implant materials are utilized in surgeries, which increases their risk for breast cancer.

Social barriers

The non-medical factors play a crucial role in impacting health outcomes. Addressing social determinants is central to reducing existing health inequities. In this study, all the participants reported stigma and discrimination while sharing their experiences in healthcare settings. They further added that this discouraged them from utilizing available health services.

The participants reported that even the healthcare providers were uncomfortable with their presence and did not treat them like other patients.

Poor housing conditions and lack of job opportunities further push them into this vicious cycle of stigma and sickness. Transgenders have also reported experiencing psychological distress due to a lack of social support. Positive attitude and gender-supportive relationships in society can promote their well-being. The need for their inclusion in society through awareness generation by government initiatives was emphasized.

TG participant 3 We can promote family planning through condom advertisements, so why not involve transgender figures in government health awareness advertisements and campaigns .

Healthcare provider expertise in TG health

All the healthcare providers felt the need for training to improve physician-patient communication and transgender persons care. A culturally competent healthcare perspective is fundamental for treating the transgender population. Those providers who had experience with such patients were more likely to provide perspectives on their care and barriers than those who had never encountered such cases. They highlighted that very few transgender patients are registered in the hospitals of Rajasthan. This can be attributed to the stigma associated with their presence rather than assuming they do not wish to seek healthcare services.

This study sought to investigate and fill the gap in the domain of transgender healthcare. The purpose of the research was to characterize the health needs and barriers faced by transgender individuals in navigating through the health system. Previous international and Indian studies have reported a lack of transgender-sensitive care. The findings of this research corroborate this premise. There is a wide and serious gap between the population’s needs and the healthcare system’s ability to respond to these needs.

The socio-demographic profile of the participants in this study revealed that the income of the majority of the participants was below INR 10,000. This finding is in alignment with the results (70%) of a study conducted among transgenders in Vadodara, Gujarat, India [ 12 ].

The FGD gave an opportunity to the study participants to express their general and gender-specific health needs. The health needs of the participants in this study included available medical services common to the general population and certain specific transgender needs, particularly psychiatric support, hormonal therapies, and sex-reassignment surgeries. This is in accordance with the previous studies, which also identified general health problems that need to be addressed, including the high prevalence of diabetes and hypertension, substance abuse, anxiety, and depression [ 13 ].

Transgender individuals discussed a range of experiences and barriers encountered in the healthcare system in accessing the available services. The barriers were categorized at the healthcare system, social and individual levels. The system-level barriers ranged from policy issues to hospital or organizational problems. It included a lack of coverage for the transgender population in government health insurance schemes. The introduction of a comprehensive package master in the Ayushman Bharat scheme has now addressed the lack of coverage for transgenders in the existing insurance schemes. It includes the existing packages as well as specific packages for transgenders [ 14 ]. This paves the way for a new chapter in their care. The unavailability of trained healthcare providers is another major problem. In 2019, National Medical Commission (NMC) updated the medical education curriculum and added a new module on Attitude, Ethics, and Communication (AETCOM) competencies [ 15 ]. It could be used as an opportunity to introduce culturally sensitive communication training for medical professionals, especially focusing on LGBTQ + community, to advance our aim to achieve equity. In addition to the unavailability of trained doctors, the inaccessibility of healthcare facilities and unaffordability also negatively impact the people’s health. All these underlying factors contribute to their practice of getting surgeries done by traditional and untrained medical practitioners. These findings are consistent with another study conducted in India to assess the health-seeking behavior of transgender people. They also reported long waiting times in hospitals affecting their health behaviors and are confirmed to have undergone medical procedures performed by gurus or technicians [ 16 ].

The finding of concern that emerged in our study sample was the use of unprescribed hormone therapy. This finding is similar to a study conducted in Maharashtra to assess the practices related to hormonal therapy [ 17 ]. It states that participants reported going for unsupervised hormone replacement therapy due to unaffordability, lack of trained healthcare providers and prior experiences in healthcare settings [ 17 ]. In order to avail the hormonal therapy, transgender patients require to undergo psychological counseling’s for confirmation of gender dysphoria. In our study, transgender individuals felt that the psychotherapy sessions are too long, leading to a delay in the initiation of hormone replacement therapy. World Professional Association for Transgender Health (WPATH) mentioned in their Standards of Care (SOC) that any minimum number of sessions cannot be fixed and is an individualistic approach. It depends whether someone wishes to avail psychological support before, during, or throughout the transition process [ 18 ]. Gender transitioning may involve but not be limited to procedures such as hormonal therapy and sex reassignment surgeries. Moreover, there are only a few public health facilities providing gender-transition services and there is no government support in the form of subsidies to avail these services from a private hospital. The government, is however, working on extending and empaneling public and private hospitals in order to make these services accessible to the population.

This need assessment study also attempted to address the social determinants barring healthcare access. Stigma, discrimination, support from family and friends, and difficulty in seeking housing determine health and healthcare accessibility. These factors have also been highlighted by the study conducted in Vadodara, India [ 12 ]. It re-emphasizes the findings from our study that social determinants such as lack of economic and educational opportunities, rejection, and isolation from society have an impact beyond gender identity issues, rather, they pose a risk to the psychological status of the transgender population.

The health disparities and barriers to care faced by transgenders should be addressed to promote health equity and justice. Comprehensive approaches to improve access, utilization, and quality of healthcare services are currently lacking. These challenges can also be addressed at the following levels:

Individual Level.

Healthcare system Level.

Community Level.

Garima Greh facilities have been introduced as shelter homes for transgender individuals where basic amenities are being provided to them [ 19 ]. They can be utilized as launchpad sites to improve their awareness of their rights and available entitlements and medical interventions. IEC materials can be displayed at Garima Greh facilities for health promotion and modification of their health-seeking behaviors. Similar to ASHA workers who are community members working for their healthcare, volunteers can be appointed from their community. Training of these volunteers can be done (Training of Trainers) so that they can improve their health-seeking behavior, increase awareness, and aid in the overall empowerment of the community.

All hospitals and clinical settings shall provide a safe and welcoming environment for gender-diverse people [ 20 ]. The fact that their physical, mental, and cultural differences affect their behaviors must be known but, more importantly, understand these differences and assigning them value is the key. Actions can be taken to promote transgender identity across healthcare settings by displaying Information, Education and Communication (IEC) material regarding their health needs and promoting their acceptance in society – ‘This hospital is LGBTQIA + friendly.’ Transgenders can also be part of the healthcare system, whereby; they can act as resource persons and promote the inclusivity of gender-diverse individuals. Medical students shall be trained to communicate sensitively to the needs of transgenders, and doctors shall be trained in a culturally competent way to treat their gender-specific needs. To promote access and utilization of health services, specific transgender clinics are being set up across the country. All participants in the study felt this would help them to access available services without hesitancy. Separate general health camps for regular and dental check-ups can also aid in health promotion and equity. Another potential solution to promote transgender health is through digital solutions. Tele-consultation can be an effective way to address their needs as well as to protect them from social stigma and discrimination that hinder their access and utilization of available services.

According to World Health Organization (WHO), social determinants account for 30–55% of health outcomes [ 21 ]. The most effective way to address SDH is by action at the community level. General campaigns and community awareness sessions are essential to promote acceptance by the general population. Moreover, the study suggests that there is a need for awareness and sensitization of transgenders regarding the basket of medical options available for them such as techniques for fertility preservation.

In summary, the study demonstrates the health issues of transgenders and reflects upon the various factors influencing health and access to care. It urges the stakeholders to contemplate the need to safeguard the rights of transgenders by providing equitable access to the available resources.

This study is an attempt to explore health needs from beneficiary as well as service provider perspectives. Our findings are consistent with the previous literature. Findings from this study provide evidence base for future research and a helpful tool for the policymakers and advocates to better address the needs of transgender people.

The study’s major limitation was that only one focus group discussion was undertaken due to limited time and difficulty in accessing the desired population. However, one FGD allowed for exploration of issues related to transgender experiences and healthcare needs. It allowed the researchers to gather detailed narratives that might not emerge from individual interviews. Given the paucity of literature in the Western Indian context, a single focus group discussion can be valuable for informing advocacy efforts and policy reforms. Participants in the study were recruited through purposive sampling and did not differentiate between cultural identities of transgender persons; therefore, the results might vary geographically and according to the social context, thus, limiting the external validity. The health needs might vary between transgender male and female populations, but there was only one transgender male participant in our study. Additionally, the service providers’ knowledge was not directly assessed by explicitly questioning the standards of care.

Proposed framework

Based on study findings, a Gender Responsive Healthcare System Framework is designed. (Fig. 2 ) This framework illustrates and emphasizes on the need for planning, interventions, and actions at 3 levels – policy (a), health system (b), social, and individual (c) in alignment with the identified themes represented in Table 1 . The framework describes how the barriers can be addressed at these 3 levels to have a robust and gender-responsive healthcare delivery system in India.

The concept of healthcare is multi-dimensional. Combined action is required at the administrative, service provider and beneficiary level for a gender responsive healthcare system. Inclusion of the transgender population in existing health insurance schemes is central to reducing their out-of-pocket expenditure and helping them gain recognition in the society through the treatments that they wish to access. Outpatient cards in hospitals should include options of male, female and transgenders/others (gender diverse) creating a safe and welcoming environment. Existing health programs shall also target transgender population for reducing the burden of infectious diseases such as tuberculosis and non-communicable diseases. At the healthcare system level, medical professionals competent to provide transgender specific care and availability of specialists shall be ensured. A robust referral mechanism from primary healthcare centers to higher levels could ensure uninterrupted care for the transgender population. Moreover, hospitals have distinct queues, for men and women. There is a need to understand that gender is not a visibly readable or unchanging phenomenon, rather it is a social construct. Proper queue management can address not only the issues of stigma, but also make healthcare accessible to them. At an individual level, good health seeking behavior and familial support can aid in improving health outcomes. Altogether, these efforts at the policy, health system and individual level can lead to improvement in accessibility, availability, affordability and acceptability of services by the transgender people.

Gender Responsive Healthcare System Framework

This study has explored experiences of transgender people navigating through the healthcare system. These accounts have highlighted their health needs and the barriers they face in accessing care. They expressed the need for mental health services, programs targeting nutritional improvement, gender-affirmation procedures besides regular screening of non-communicable diseases as operational for males and females. Levels of barriers have been identified ranging from absence of targeted policies to individual behavior. Targeted efforts and intersectoral collaboration are required for effective establishment and delivery of healthcare services.

Data availability

The data generated and reviewed are fully available in this article and its supplementary files. For any further data, Dr. Tanvi Kaur Ahuja ([email protected] could be contacted).

All relevant data analyzed during this study are included in this published article and its Supplementary Information files.

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Acknowledgements

The authors would like to acknowledge the contribution of Sambhali trust, Jodhpur and Nai Bhor Sanstha, Jaipur for helping us to get in touch with the transgender participants.

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T.A., A.G. Conceptualized the research study done, A.G., M.G., N.J., P.B. framed the Methodology was framed, T.A., N.K., M.M., N.S., N.G., A.C. contributed in collection of data; T.A., A.G. prepared the Original draft; T.A., A.G., S.S., K.T. Reviewed and edited the manuscript; P.B. M.G., N.J. Supervised the research study, All authors have read and agreed to the published version of the manuscript.

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Ahuja, T.K., Goel, A.D., Gupta, M.K. et al. Health care needs and barriers to care among the transgender population: a study from western Rajasthan. BMC Health Serv Res 24 , 989 (2024). https://doi.org/10.1186/s12913-024-11010-2

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The insights of allied health professionals transitioning from a matrix structure to a centralized profession-based structure within a public hospital setting

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Gemma Turato ORCID: orcid.org/0000-0002-9589-7425 1 ,
John Whiteoak 2 &
Florin Oprescu 2

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To manage the challenges associated with increasing costs and demand for healthcare, administrators often propose a re-structure of the workforce to gain more efficiencies. However, this can have detrimental impacts on professions such as allied health if the uniqueness of this workforce is not taken into consideration before, during and after re-structuring. In the dynamic setting of public hospital bed-based services, allied health is highly complex, consisting of diverse professionals (e.g., audiology, physiotherapy, occupational therapy, podiatry, pharmacy, dietetics, social work, and speech pathology), each requiring different technical expertise, training pathways, professional governance, and accountability. This case study evaluates the outcomes of a re-structure of allied health professionals working in bed-based services who transitioned from a matrix to a centralized structure of service delivery. Qualitative data were collected in a survey across three years to gain the perceptions from allied health staff about the impacts of the new structure. The results demonstrated that a centralized profession-based structure with single points of accountability was superior to a matrix structure in this context. The benefits identified included improved governance, administration efficiencies and cost-savings gained by having the budget and professional management aligned. This resulted in improved workforce planning and flexibility that delivered care to patients based on clinical priority. Further benefits included professional skills training pathways and succession planning across clinical specialties which enhanced career opportunities, all of which improved wellbeing and morale. These findings add to the sparse research pertaining to the components (structural, human and systems) to consider when incorporating allied health professionals in a proposed organizational design and the contingencies they require to operate successfully within certain contexts.

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Introduction

To manage challenges associated with increasing costs and demand for healthcare, administrators have been looking for more efficient approaches in delivering quality care and enhancing performance. A common approach aimed at improving overall performance in many large organizations such as public hospitals has been to re-structure. However, past evidence has suggested that implementing structural change without due consideration of the unique requirements of health professionals such as allied health employees can have negative implications (Braithwaite et al. 2006 ; Law and Boyce 2003 ; Mickan et al. 2019 ). A review of allied health professionals (AHPs) working in Victoria, Australia concluded that there is no one best structural model for AHPs as they are a support workforce that connects and contributes to local priority requirements and systems (Buchan and Law 2016 ). Consequently, avoiding the ‘one size fits all’ approach is critical when an organization proposes a new structure that involves AHPs (Braithwaite et al. 2006 ; Law and Boyce 2003 ). This is the basic premise of organizational design theory which recognizes that there is not just one most suitable solution for organizing and that different organizations are not equally effective or efficient (Galbraith 1973 ; Burton and Obel 2018 ).

Organizational theory is defined by Jones ( 2013 ) as the “study of how organizations function and how they affect and are affected by the environment in which they operate” (pp. 30). The focus of organizational theory is to understand how to organize people and resources in order to achieve the organizations objectives (Greenwood and Miller 2020 ). Hence, in order to achieve its goals, the organization needs to focus on both structure and culture. Additionally, organizational design is about how and why various functions are chosen and puts pressure on individuals and work groups to behave in certain ways. Therefore, if the proper balance is not achieved, this can have significant impact on the organization’s performance (Jones 2013 ).

The multi-contingency theory of organizational design developed by Burton and Obel ( 2004 ) explains this further, by relating variations in organizational design to variations in the situation of the organization (i.e., its contingencies), which they conclude should be chosen based on the particular context. Furthermore, the description of the context should be multi-dimensional, including structural components (i.e., goals, strategy, structure, and tasks), human components (i.e., leadership, work processes, and people) and coordination (i.e., control systems, decision systems, information systems, and incentive mechanisms).

In this view, organizational design is more a process than a structure that is constantly adapting and evolving and planning for contingencies that may arise (Burton and Obel 2004 ). Further, the design of an organization shapes the flow of information, resources, and support, which effectively determines the powerholders (Myers 1996 ). Allied health employees are a good example of when the power imbalance in large healthcare organizations can create perceptions of inequitable treatment and lead to workers feeling disenfranchised. Even though AHPs constitute the second largest workforce within the health industry in Australia and make a significant contribution to health improvements, this contribution remains under recognized due to much of the health policy and funding focused predominantly on medicine and nursing (Buchan and Law 2016 ). Subsequently, AHPs are often not visible enough on the health policy agenda and there is little evidence available regarding their cost benefit and value. Consequently, there has been a relative lack of examination of the allied health workforce and how they contribute and influence in healthcare organizations. This has resulted in organizational designs that have minimal consideration given to AHPs and the contingencies that may impact their performance and wellbeing, which has ultimately resulted in unfavorable outcomes (Boyce 2006 ; Robinson and Compton 1996 ; Turato et al. 2023 ).

While there is some debate on the correct definition of this workforce (Turnbull et al. 2009 ), according to the Allied Health Professions Australia (AHPA, 2022), they are considered as health professionals that are separate to medicine, dental and nursing and provide specialized support across a variety of health services. Typically, these include audiology, dietetics, exercise physiology, occupational therapy, pharmacy, physiotherapy, podiatry, psychology, radiography, social work, and speech pathology. They usually operate autonomously and practice in an evidence-based paradigm, using an internationally recognized body of knowledge to provide optimal patient outcomes (AHPA, 2022).

The focus of AHPs in public hospital bed-based services is to work within a multidisciplinary team that delivers a coordinated approach to patient care (AHPA, 2022). This fast-paced context requires AHPs to make rapid clinical decisions frequently and be adaptable and flexible across clinical areas when under pressure to meet clinical demands (Philip 2015 ). They require highly technical knowledge and skills to deliver care in this setting (e.g., social worker organizing crisis accommodation, physiotherapist managing a severe respiratory condition to avoid an admission to the intensive care unit, occupational therapist fabricating a complex hand splint following trauma surgery, pharmacist assisting the medical team with medication management and dosage for acutely unwell patients). These types of pressures distinguish a public hospital bed-based setting from a community or primary care setting, in which the client group is not in the acute stages of treatment or requiring highly technical expertise from AHPs (Philip 2015 ). The relatively limited evidence suggests that for AHPs to function optimally in public hospital bed-based services requires an efficient and effective organizational design that takes into consideration both the multi-faceted nature of the allied health workforce and the layers of professional and clinical governance required to manage them effectively.

Given the specific needs of AHPs working in this sector of the hospital, this case study provides distinctive insights from AHPs, to better understand their operating requirements. This is important for hospital systems to understand if they are proposing to re-structure with the aim of delivering more efficient, sustainable, and effective services. Not taking into consideration the unique requirements of AHPs to function optimally and treating them the same as nursing and medicine is likely to result in poorer outcomes and impact performance (Turato et al. 2023 ). One of the key differences of AHPs when compared to nursing and medicine is the need for each individual allied health professional to navigate multiple identities with respect to their profession, the overarching allied health structure and alignment, and their inter-professional teams (Porter and Wilton 2020 ). The diversity of AHPs, each with different technical expertise, training pathways, sectors of practice and professional governance, makes AHPs working in hospital bed-based services highly complex. Therefore, as healthcare becomes increasingly complex, requiring seamless interdisciplinary teamwork and maximal return on investments in the health workforce, it is critical that the organizations in which AHPs work have considered the structural, human and system components of their design so that the widespread potential AHPs represent is fully realized (Australian Health Workforce Advisory Committee 2006 ).

In this study, the insights and experiences of hospital bed-based AHPs who were involved in a transition from a matrix to a centralized allied health structure were explored. The focus of the research was a large multi-site Australian public hospital and health service with five clinical orientated groupings (i.e., medical, surgical, women’s and children’s, community, and mental health). In 2017, the organization expanded to tertiary level services with the addition of a new hospital. In preparation for this, AHPs were dispersed into each of the five clinical groups under the management of a medical and nursing director. However, the matrix structure did not deliver upon the anticipated outcomes for AHPs working in the medical and surgical clinical groups with a range of unfavorable concerns reported (e.g., ambiguity, reduced workforce flexibility, increased cost, and low morale). Following consultation with key stakeholders and AHPs, a centralized allied health structure was implemented for AHPs working in the medical and surgical clinical units. To measure the outcomes, qualitative data were collected through an online survey in June 2020, 2021 and 2022 through open-ended questions and confirmatory meetings to verify generated themes.

This paper presents the findings of this iterative process and highlights the importance of implementing the ‘right structure’ which has the appropriate governance and support systems for AHPs working within hospital bed-based services. Further, it demonstrates the importance of healthcare administrators needing to be well informed about the complexities of AHPs before they consider embarking on structural change that incorporates AHPs in this context. This research contributes to relevant theory and practice by providing a deeper understanding of the type of structure and functions that may enhance AHPs experience of working in hospital bed-based services. Furthermore, the paper emphasizes that the unique contextual nuances of the work of AHPs are often overlooked during a re-structure, and this can have detrimental outcomes (Turato et al. 2023 ). Given there is limited empirical research about AHPs re-structuring in public hospital bed base services, understanding the experiences and insights of AHPs going through structural change, adds to the evidence that may enhance future structural re-organizations pertaining to this workforce and further maximize their potential and productivity in public hospital settings.

Background/theory

Organizational theory.

Organizational theory has developed over three eras’, with early organizational theorists classifying organizational structures as either mechanistic or organic (Anand and Daft 2007 ). The first era predominantly adopted mechanistic structures during the mid-1800s to the late 1970s and were designed for stable and simple organizational environments with low to moderate uncertainty. They were described as self-contained, top-down pyramids containing internal organizational processes that took in raw materials, transformed them into products which were then distributed to customers (Anand and Daft 2007 ). The second era included organic organizational structures and systems which were designed for unstable, complex, and changing environments, which mechanistic structures could not manage. This era gained momentum in the 1980s and extended through the mid-1990s and incorporated horizontal organic organizational designs with a flattened hierarchical, hybrid structure and cross-functional teams (Daft 2016 ).

A third era formed in the mid-1990s and extends to the present day, being driven by factors, such as the internet, global competition with low-cost labor; automation of supply chains and outsourcing of expertise to speed up production and delivery of products and services. During this period, structures evolved, including the functional, divisional, matrix, global geographic, modular, team-based, and virtual (Daft 2016 ). Given this case study focuses on the centralized divisional and matrix structures, a brief outline of each will be covered next.

The divisional structure incorporates several functional departments grouped under a division head. Each functional group in a division has its own marketing, sales, accounting, manufacturing, and production team. The advantages include, each specialty area can be more focused on the business and budget; employees understand their responsibilities; improved efficiencies of services; and easier coordination due to all the functions being accessible. The disadvantages of this structure include divisions becoming isolated and insular from one another and different systems, such as accounting, finance, and sales, may suffer from poor and infrequent communication and coordination of the organizations mission, direction, and values (Daft 2016 ).

The matrix structure is an organic structure aimed at responding to environmental uncertainty, complexity, and instability (Burton et al. 2015 ; Daft 2016 ). The matrix structure originated at a time in the 1960s when the United States aerospace firms contracted with the government. Since that time, this structure has been imitated and used by other industries and companies since it provides flexibility and helps integrate decision-making in functionally organized companies. The matrix design has formal authority along two dimensions: employees report to a functional, departmental boss and simultaneously to a product or project team boss. This dual reporting has been described as one of the significant weaknesses of matrix structures due to the confusion and conflicts employees experience in reporting to two bosses. Hence, a detailed design of the decision-making process at each junction point is required for a successful matrix organization (Burton et al. 2015 ; Daft 2016 ). Further, to be successful a matrix structure requires important contingencies, such as climate, leadership, knowledge sharing, information technology and incentives that are correctly designed and aligned with one another (Burton et al. 2015 ). The next section will briefly outline specific allied health structural approaches and summarize the implications for the provision of care by AHPs reported in literature.

Allied health models

During the mid-1990s, AHPs were commonly incorporated into the emerging organizational structures in healthcare, with a growing body of research being published about the impacts on AHPs (Law and Boyce 2003 ). It is generally recognized that allied health structures can be classified into four types: (1) the traditional medical model, (2) division of allied health, (3) clinical matrix and (4) integrated decentralization model (Boyce 1991 ). The traditional medical model is where individual profession-based departments report to a medical director (Boyce 1991 ; Law and Boyce 2003 ). This model is common practice in many smaller hospitals in which there are small numbers of AHPs. However, the model is rare in larger hospital settings in Australia where there are high employee numbers within each profession requiring professional governance and oversight (Boyce 2006 ).

In the allied health division model (i.e., centralized profession-based structure), a director of allied health is a member of the executive leadership group and AHPs are centralized into one division (Boyce 2001 ; Law and Boyce 2003 ). The main advantages of this model are argued to be improved communication flow between senior management and departmental managers, and it positions allied health as having more status and a collective identity (Boyce 2001 ). Disadvantages purported are the concentration of power in management, competition between the professions and less identification with a whole of organization view (Boyce 2001 ).

In healthcare organizations implementing the matrix structure involved giving financial control to clinical units and services being organized around patients rather than providers (Braithewaite et al. 2006 ; Law & Boyce 2003 ). This resulted in dispersing individual AHPs into clinical units with a dual authority relationship between professional and operational reporting lines (Boyce 2006 ). Often, an allied health advisor position at the executive level is appointed to address allied health issues occurring within the clinical sub-units (Boyce 2001 ). In the public hospital setting, literature suggests that a matrix structure delivers multiple benefits, such as reduced hospitalization time and costs, better accessibility for patients, and improved coordination of care (Braithwaite et al. 2006 ; Burton et al. 2015 ; Callan et al. 2007 ; Mueller and Neads 2005 ). The aim of including AHPs was to encourage better collaboration and cooperation across the multidisciplinary team (Porter and Wilton 2020 ). However, the growing evidence available reports many negative outcomes, including operational inefficiencies, loss of professional identity, ambiguity over dual reporting lines, low morale, poor job satisfaction and negative impacts to service delivery (Braithwaite et al. 2006 ; Callan et al. 2007 ; Porter and Wilton 2020 ; Robinson and Compton 1996 ; Turato et al. 2023 ).

The hybrid model classified as the integrated decentralization model is a combination of the allied health division and matrix structure (Boyce 1991 ). In this structure, allied health budgets remain under the control of allied health; however, clear documentation of how AHPs will provide care to each of the clinic units is often required. In this model, it is suggested that collaboration brings benefits of transparent operational and strategic planning, including the ability to implement research, clinical education, individual staff development and professional specific quality clinical services (Mueller and Neads 2005 ). However, this model requires good relationships between key stakeholders to ensure its viability.

The allied health models described above provide a brief overview of each with some demonstrating more potential advantages for AHPs. While the insights available on the impacts of structural change on AHPs is growing there is still limited research about the impacts for AHPs going through such change. In this study, the perceptions and experiences of AHPs who have transitioned from a matrix to a centralized allied health structure within public hospital bed-based services are explored. The aims of the study being to first add to the current gap in knowledge about factors that may mitigate negative experiences of AHPs when hospital administrators are considering a re-structure in this setting. Second, what structures and/or supporting strategies are required to meet the complex needs of AHPs working in this dynamic context. Hence, this case study addresses the following research question:

RQ1: What are the insights and experiences of AHPs transitioning from a matrix to a centralized profession-based structure within public hospital bed-based services?

Research context and case background

The region in Australia in which the study took place is described as peri-urban with an estimated population of 400,000 people in 2022. It is the fifth most populated area in Queensland and has grown steadily at an average annual rate of 2.4% year-on-year since 2018. It is a center for tourism, attracting more than 3.2 million visitors each year. The economy has outpaced most other regional economies in Australia in terms of growth over the last 15 years across several key sectors including healthcare, education, finance, and professional business services (Connection Australia 2023 ). The case study research occurred at a multi-campus hospital and health service, with a new tertiary facility opening in 2017. This facility provides tertiary level services to the community and the clinical capability to care for highly complex inpatient and ambulatory care services. The health service is an independent statutory body governed by a Board under the Hospital and Health Boards Act 2011. The health service operates according to a service agreement which identifies the services to be provided, funding arrangements, performance indicators and targets to ensure the expected health outcomes for the community are achieved.

To prepare for this expansion, the allied health workforce (approximately 600 staff) was integrated into the broader organization’s matrix structure in 2014. The organization believed this would support a multidisciplinary culture that was collaborative, reduce service gaps and improve consistency of allied health services. This in turn would involve AHPs in clinical directorate operational planning and improve the reporting of AHPs performance. The individual AHPs were assigned to one of five clinical orientated service groupings. These five groups were medical, surgical, women’s and families, mental health, and community. Medical imaging and pharmacy remained as standalone groups that reported operationally and professionally to a director of those professions. Each director subsequently reported to the service director in the medical group. The new tertiary facility provided the hospital and health service with a total bed count of approximately 884 beds in 2018, which increased to 1032 beds by 2022. The staffing grew from approximately 4500 full time (FTE) equivalent employees to 6500 in 2022 with an operating budget in the 2021–22 annual report of 1.45 billion dollars.

A consequence of the matrix structure was that the allied health executive lead and professional director roles were abolished. Figure 1 illustrates that these roles were replaced by allied health operational manager roles for each service group that were part of the multidisciplinary service group leadership team and a clinical director of allied health role which provided overall professional leadership for allied health.

Allied Health organizational chart following alignment to the matrix-oriented clinical directorate structure

The AHPs in the matrix structure reported operationally to an allied health manager and professionally to a professional leader role (i.e., horizontal gray line in Fig. 1 ) that did not have operational or budgetary responsibility. This resulted in many AHPs having dual reporting responsibilities to either an allied health manager or lead for operational requirements and a professional lead for professional governance (Turato et al. 2023 ).

The structural change to a matrix alignment was met with a range of negative consequences particularly within the medical and surgical groups (Turato et al. 2023 ). Some of these included confusion over reporting lines with multiple conversations needed to resolve workforce matters. Another included increased costs and inefficiencies due to more administration (e.g., several AHPs were aggregate employees with more than one position number for each clinical unit they were working for, with some staff having up to four position numbers). The increase in position numbers multiplied the paperwork involved to manage the employee, hence increasing the cost, time, potential errors, and re-work required. This led to limited opportunities for staff rotations and career opportunities due to the administration needed to manage this. Others included limited growth in staffing levels due to the budget being owned by each clinical unit and often allied health staffing was not advocated for or understood by the clinical unit (e.g., decisions about increasing allied health FTE and in which profession often had no robust planning or reasoning). A further concern raised by AHPs was the overall voice of allied health in the organization was minimized due to the matrix structure, which resulted in AHPs reporting a perceived lower status within the organization. All these factors ultimately led to lowered morale and wellbeing being reported (i.e., public sector employee opinion survey results from 2017 to 2019).

The negative impacts reported led to a strategic decision to implement a centralized allied health structure by amalgamating AHPs in the medical and surgical groups. The posited aims of the shift back to a centralized structure included:

Reduce patient risk through an enhanced discipline lens.

Decrease confusion over reporting lines and improved communication.

Decrease duplication of tasks for AHPs within each service group.

Improve flexibility to mobilize AHPs based on clinical priority.

Improve governance and accountability for AHPs.

Decrease administration time and structural inefficiencies.

Improve support to the facilities outside of the tertiary facility.

Improve the ability to implement new models of care, innovation, and research.

The centralized allied health structure commenced in January 2020 and re-introduced what had been dismantled in 2014. The structure abolished the professional lead and allied health manager roles and created professional director roles that were responsible for both operational and professional requirements. The clinical director allied health role was re-aligned to an executive director allied health role which reported to the chief executive. Figure 2 illustrates the organizational chart for the centralized allied health structure.

Allied Health Centralized Structure

Study design

This research presents qualitative data that were collected through an open-ended questionnaire using an online survey. The questions focused on why and/or how AHPs perceived the new centralized structure and was repeated annually for 3 years (i.e., 2020, 2021 and 2022). Follow-up confirmatory meetings with each profession were also conducted to confirm the themes derived from the survey feedback.

The survey asked participants to consent for their data to be used for research. Participants who did not provide consent were removed from the final research analysis. The study was conducted according to the guidelines of the Declaration of Helsinki and approved by the Ethics Committee of The Prince Charles Hospital, Queensland Health Human Research Committee (HREC 18/QPCH/238 on 30/08/2021).

Participants/data collection

Table 1 provides the types of professions and number of staff who consented to participate in the study. The new allied health structure incorporated hospital bed-based services within the Medical and Surgical groups with a total FTE of approximately 400 by 2022. During the planning phase of the study, staff expressed concern over being identifiable if they participated in a survey. For example, the professions with small numbers of staff (i.e., audiology, podiatry, psychology) perceived they could be identifiable if they were asked to disclose gender, age range, years in the profession / organization, level of education etc. Therefore, to encourage increased participation, demographic data were kept to a minimum, with the focus of the survey being on gaining qualitative feedback on the structural change.

This sector of the workforce is typically made up of a range of staffing levels from assistants, new graduates, base grade, senior, advanced and management levels. The staff who took part within each profession are typically representative of the professional roles that work in this sector. Not surprisingly, the professions of physiotherapy, occupational therapy and social work have higher numbers of clinicians working within bed-based services and hence have higher representation in the survey results. Additionally, the total number of employees who participated in the survey by profession is indicated in brackets in Table 1 to demonstrate how representative the sample is of the total population for that profession.

The profession of pharmacy was initially not included in the new centralized structure. This profession was incorporated into the new structure in 2021, but after the 2021 survey was administered. This would explain the no response rate from this profession in 2020 and 2021, but a higher completion rate in 2022. Medical imaging was not incorporated within the new allied health centralized structure and did not participate in the survey.

The response rate ranged from 25% (2020), 23% (2021) and 24% (2022) across the three years. This is a comparable response rate to a similar study published by Porter & Wilton ( 2020 ) on professional identity, in which they collected data following an organizational re-structuring in which AHPs were integrated into a matrix structure, within a large multi-site health network in Victoria, Australia. The survey response rate for each survey conducted pre and post was 23.4% and 20.8%.

The survey asked two open-ended questions about what AHPs perceived to be the barriers or issues regarding the centralized structure and what they believed were the enablers or suggestions to improve the implementation. In addition, participants were asked to provide feedback on the structural change against the aims and reasons for implementing the change (see Appendix 1 for a copy of the survey).

Data analysis

To analyze the narrative data, a manual thematic analysis was completed using a six-phase thematic analysis methodology developed by Braun and Clarke, ( 2006 ). The data analysis method contains a rigorous coding and categorizing methodology that is driven by the data collected during the evaluation process, rather than any analytic preconceptions (Nowell et al. 2017 ). The analysis involved an inductive approach that first identifies themes, which are analyzed initially in a descriptive form before progressing to an interpretive form. The interpretive form attempts to look beyond the surface of the data where the broader meaning and ultimate implications of the themes/patterns are deduced via engagement with the literature (Braun and Clarke 2006 ).

To extrapolate the underlying themes, the first phase involved migrating the raw narrative data from the surveys to column A in a Microsoft Excel worksheet (one sheet per survey question 3, 4 and 5). The primary researcher spent time reading and re-reading the raw data for each of these questions, noting down initial ideas, thoughts, and potential codes/themes (in column B). The primary researcher used this part of the process as a key phase of data analysis—in other words, as an interpretive act (Lapadat and Lindsay 1999 ) in which the primary researcher looked for meaning in the data.

The second phase included generating a single column of all comments per question 3, 4 and 5. The single column of data per question was sorted and reviewed to remove any duplicate entries. The next step was the coding process to determine the potential themes emerging from the data. There were no pre-determined thematic areas in place before the coding process was initiated. For the coding process, each individual cell (participant comment) from the single column of data per question 3, 4, and 5 was reviewed and assigned a potential thematic area, to which a cell color code was applied (yellow, blue, orange, gray etc.).

This data-driven, inductive approach ultimately led to the identification of initial thematic areas, each labeled with a different color. The types of themes that came out of the data were based on similarities of words to create the theme. For example, for the barriers/issues question 4, many participants talked about the problems related to arduous administration tasks. These types of comments were then coded to capture the essence of what the participants were expressing e.g., inefficient, and arduous administration. The codes were then assigned to potential themes for question 4 of which one included “inefficient administration.” In contrast, for question 3 pertaining to whether the aims were being met, many perceived significant improvement and efficiencies with administration, with the code phrased as, “improved administration.” The codes from question 3 were then placed against potential themes with those related to better administration coming under the theme of “ improved systems / processes ” for further analysis and discussion. If some points fell under two themes, the worksheet cell with the raw data was duplicated and each cell color-coded appropriately to ensure everything was recorded. Using the Excel sorting tool, the data was sorted by the color assigned to each cell, and therefore by thematic area. This sorting and collation approach brought together all the key points on each theme which determined the frequency of a theme raised by participants, which in turn assisted the researchers in determining the prominence of a theme (e.g., for the aims question, the frequency of respondents perceiving whether they believed all the aims were being met, versus whether they thought one or more were not being met was carefully considered in the analysis). After sorting and combining similar statements, the initial color-coded data analysis resulted in a list of comments sorted against potential codes/themes by each of the selected questions.

In phase three, the researchers analyzed and interpreted the data to make overall sense of it, rather than just paraphrasing or describing the data. Following the initial coding exercise, the data was copied for each question to a second Excel worksheet. This step involved a “first pass” over the data and involved grouping similar comments to consolidate the data. Every time the pass was performed for each thematic area per question, the data was moved to a new excel worksheet. The reason for the multiple worksheets was that the researchers could go back a step to the previous unconsolidated data set if needed.

To limit researcher bias and ensure the data was credible and accurate, phase four involved a two-researcher confirmation approach, in which each stage of the data analysis was reviewed. The first level involved reviewing at the level of the coded data extracts to determine if they formed a coherent pattern. If this was the case, the researcher then moved onto the second level of this phase to determine the validity of individual themes in relation to the data set. The primary researcher completed a re-read of the entire data set to firstly ascertain whether the themes worked in relation to the data set and secondly to code any additional data within the themes that had been missed in earlier coding stages. The data pass steps were repeated five times (constant comparative analysis) to finally generate the most prominent themes. This process generated a thematic map of the analysis to ensure the analysis and data matched each other. The primary researcher stopped this process once the refinements of the data did not add anything substantial and used two ways to arrange and analyze the data. The first being most prevalent theme to the least prevalent related to the frequency of the information being raised by participants. The second included the Rashomon effect whereby the same event is described from the perspective of more than one participant (Sandelowski 1998 ).

Phase five defined and named the themes, which started once both researchers were satisfied with the thematic map of the data. This involved the researchers defining and further refining the themes to identify the essence of what each theme was about and determining what aspect of the data each theme captured. This phase included reporting of the themes and presenting these to AHPs who had the opportunity to complete the anonymous survey and who volunteered to attend one of a series of confirmation meetings. These meetings clarified and corroborated the generated themes, which confirmed the final set of emergent themes. It is important to note that the aims, barriers, and solutions will be discussed next under four key themes in a combined approach due to many of the solutions being similar to the aims of the new structure and a reverse of the barriers. This avoided duplicating information throughout the results/discussion section.

Results and discussion

Theme 1: systems and processes.

The most prominent theme across the three years was that the centralized structure had greatly improved the systems and processes necessary for AHPs to operate their essential functions within hospital bed-based services. The findings about improvement in systems and processes are similar to the studies outlined in the literature that describe comparable benefits of a centralized allied health profession-based structure in public hospital settings (Law and Boyce 2003 ; Mickan et al 2019 ; Robinson and Compton 1996 ). The following comment sums up the general sentiment of the participants across the three years, “I think overall things are going really well for allied health and the new structure is delivering on the aims it set out to achieve, there is a real sense of hope for the future” (occupational therapist). The survey data indicated a high proportion of AHPs perceived the posited aims of the new structure were being achieved and that a centralized structure in bed-based services for AHPs worked well. This was also confirmed at the confirmatory meetings; however, it was highlighted at these meetings that each profession needed a governance structure that could accommodate their diverse professional requirements.

Thus, a prominent and positive structural feature highlighted by participants was the single point of accountability for each profession, which they believed improved processes by decreasing ambiguity and improving communication (Mickan et al 2019 ). Comments highlighting this included, “ the clear reporting lines and channels of communication improves the speed of response to service needs” (physiotherapist) and “ the new structure is a positive change with less confusion around reporting lines” (speech pathologist). Furthermore, one reporting line decreased the duplication of tasks and subsequently streamlined payroll and administration duties. This resulted in significantly less employees with multiple position numbers, reducing the time required to perform many related administrative tasks, which resulted in improved efficiencies. The following comments reinforced this view point, “the reporting lines are easier to navigate for operational and clinical needs” (social worker) and “ direct reporting lines via each profession means that administrative tasks are more streamlined” (psychologist) and “communication and the ability to implement new models of care appear to be more streamlined and better supported” (physiotherapist) and “the new structure is much more efficient from an admin and payroll perspective, I don’t need to spend hours correcting payroll errors, thank you” (administration staff member). These benefits had substantial implications for not only the AHPs but also the organization due to more streamlined and efficient processes. For example, the grouping of each profession enabled the director of each professional area to complete and approve actions more promptly, reducing duplication of resources and costly administration errors.

Another prominent benefit of single lines of accountability included each director’s ability to flexibly mobilize their staff more seamlessly. This created better delivery of prioritized clinical services due to less arduous negotiations with medical and nursing administrators. It also significantly improved the governance and accountability of staff within each profession. Moreover, the feedback from the participants suggested they believed this reduced patient risk by having an enhanced professional lens through high standards of professional supervision, skills training and support. The following comments sums up the general sentiment, “there is a sense of team, improved accountability and enhanced professional support and career opportunities with the new structure, as well as improved staff mobilization to cover emergent leave” (speech pathologist). Participants reported satisfaction with being able to rotate between clinical specialties which enhanced their career opportunities and succession planning.

One of the few related examples in the literature included research by Robinson and Compton ( 1996 ) which provided practical learnings from their re-structuring from a matrix to a centralized model for physiotherapy staff. Similar to the findings in this case study, they demonstrated for the physiotherapy profession multiple benefits of a centralized model in hospital bed-based services when compared to a matrix model in a very short period. One prominent similarity found not only for physiotherapy, but for all the professions included the operating improvements such as maintenance of staffing levels due to being able to have control of the budget. This resulted in savings being made very quickly due to streamlining processes, such as recruitment, rostering, backfill, ordering non-labor stock, etc. The following comment highlights this, “ we can take a whole of profession approach to movement of staffing into areas of higher need which is appreciated and effective especially throughout times of significant unplanned leave due to COVID and needing to isolate” (occupational therapist).

Many of the system and process efficiencies gained from each profession having control of budget was due to the in-depth understanding and knowledge the directors had about their profession and how best to govern, roster and manage the workforce seamlessly when compared to the previous structure in which the operational manager was not of the same profession, which often resulted in arduous communications between multiple stakeholders to manage clinical demand across the clinical units.

Theme 2: professional identity

The second prominent theme demonstrated that the identity of each profession developed very quickly within the centralized structure and the participants generally expressed they felt more supported and comfortable within their own profession. The data analyzed from the survey results (and confirmed at profession meetings) reported that many respondents perceived that returning to a profession-based structure was positive. A high proportion of participants indicated that operating as professional groups and being in an allied health centralized structure was a better person-environment fit in comparison to the change associated with working in a matrix structure. For many of the AHPs, they perceived a strong sense of familiarity and belonging to their profession and to allied health when compared to their sense of belonging to their clinical unit and the organization. The following comment supports the general sentiment, “ profession specific led teams is proven to work, and this is how other tertiary facilities in Queensland run. Having a different profession govern a discipline they know very little about is a recipe for disaster which we have proven in our previous structure” (dietitian).

This aligns to findings in research which has previously identified the importance of professional identity among AHPs (Braithwaite et al. 2006 ; Porter andWilton 2020 ). This is consistent with the multitude of comments from participants that the new structure was providing strong governance and accountability for each profession. The following comment highlights the general perception from participants, “ the centralized structure provides stronger accountability across the organization and uniform governance and consistency for allied health staff” (psychologist). This is particularly important in hospital bed-based services given the highly specialized skills required to work competently in this setting. In contrast, there was a small number of respondents that identified more positively with the matrix structure, describing a strong allegiance with their multidisciplinary team and/or clinical unit. Therefore, the findings reinforce the importance of managing professional identity of AHPs during structural change, given their experiences of the structural alignment can be perceived differently (Beasley et al. 2020 ; Porter andWilton 2020 ).

This can be explained through Social Identity Theory in which an individual identifies with social groups partly to enhance self-esteem, which is probably why, in this case some of the AHPs did not adjust well to the new structure, even though transitioning to being a member of their own professional group would have been familiar to them (Ashforth and Mael 1989 ). Some AHPs felt a sense of loss for their multidisciplinary leader who provided them with positive reinforcement. The following comment highlights this, “I am concerned that the profession specific model loses the importance of multidisciplinary care and fails to acknowledge how this profession-based change impacts service delivery. I think we need to have the multidisciplinary allied health lead in each clinical unit like before we re-structured to ensure we don’t silo into professions when delivering care to patients” (Physiotherapist).

This case study highlights that any type of structural change in healthcare is likely to impact professional identity in allied health due to the diversity of professions and that this needs to be managed accordingly. Beasley et al. ( 2020 ) recommended organizations recognize that AHPs are autonomous clinicians, who are members of several groups (i.e., own profession, healthcare teams and the organization), with all of these diverse roles influencing both their response and adaption to change. They stated that clear communication and affording opportunities to make decisions and provide feedback can improve employees’ perceptions of change and positively impact their wellbeing (Beasley et al. 2020 ; Byers 2017 ). Furthermore, Braithewaite et al. ( 2005 ) recommended organizations concurrently consider both the previous and the new identities throughout a re-structure by explaining the change initiative and supporting employees to transition from the old to the new identity. This approach can help to ensure security for employees, whose group status is threatened by the change process, as well as broaden perceptions of the ingroup, thereby assisting their acceptance of the new, post-change structure. This point flows into the third prominent theme pertaining to staff morale and wellbeing.

Theme 3: morale and wellbeing

Although the written responses analyzed from the survey questions indicated that a high proportion of participants believed the centralized allied health structure was a positive change, the findings also demonstrated that staff perceived morale and wellbeing to be an issue and was negatively impacted across the time the matrix structure was in place. This case study found low morale and wellbeing before re-structuring AHPs working in hospital bed-based services into a centralized allied health structure. This was suggested to be more inherent in broader change that was occurring and associated with several years of ongoing budget cuts and organizational change in adjusting to a new tertiary facility. While there were many supporting statements the following comment expresses the general perception, “there has been many years of incessant change and a lack of support and resourcing for clinical practitioners, with an expectation to just keep doing more with less due to the ongoing issues with the organizations budget” (social worker).

Another influencing factor that occurred a few months following the re-structure was the COVID-19 pandemic, which participants perceived impacted morale and wellbeing. Literature describes the impact of the COVID-19 pandemic, which overwhelmed and stretched healthcare systems past their limits in terms of capacity and resources, while striving to continue to deliver quality care (Søvold et al. 2021 ). This resulted in significant impacts on the mental health and psychosocial wellbeing of frontline healthcare workers (including AHPs) and increased risk of depression and burnout (Søvold et al. 2021 ; Willis et al. 2021 ). The following comment supports this view, “the workloads are unrelenting and leading to both overt and silent burnout. Increasing patient complexity and volume is beyond that which allied health staff can meet discharge planning and patient care demands” (occupational therapist).

Within the narrative feedback, many comments were made that staff were thankful of being in a profession-based structure at the time the pandemic started. Participants believed the one line of accountability and professional expertise allowed immediate decision-making such as being able to mobilize staff quickly to the areas of most need. The following comment highlights this point, “the new structure brought each profession together as a cohesive team which was invaluable during the pandemic where we needed the support from colleagues in our profession to cope and meet the demands” (physiotherapist). During the pandemic, it became very clear that having a flexible and adaptable workforce and an overall professional director that understood the complexities and skill sets of their professional group was extremely important due to managing higher numbers of emergent sick leave.

The negative impact of the pandemic on staff morale and wellbeing was a prominent theme in both the 2021 and 2022 survey results due to workforce shortages and staff feeling significant pressure to do more with less with comments like, “ although overall I agree the new allied health structure has improved a number of parameters, the projected benefits have been clouded by other variables notably budget constraints and ongoing emergent leave due to the pandemic impacting resources” (social worker). Even though the structure was considered positive, the pandemic added another layer of complexity that impacted staff morale negatively within the new structure. The pandemic placed added strain on staffing levels across allied health, nursing, medicine, operational and administration. The staff shortages impacted the organization’s budget as shifts needed to be replaced or staff paid overtime to ensure there were adequate levels of staffing on the inpatient units. Many staff commented, “staff morale could have been much worse in allied health if the matrix structure had still been in place as we would not have been able to be so adaptable and flexible within in our professions” (speech pathologist). Therefore, even with the pressures described, the perception from AHPs was that morale had improved because of the new structure due to increased collaboration and support within each profession. Even though improvement in morale was evident within the allied health workforce, many of the participants perceived low morale was still an issue that required a targeted approach by the allied health leaders, which is discussed next.

Theme 4: Leadership training and resources to support the change

The final prominent theme from the data analysis was extrapolated from the open-ended question pertaining to the enablers that could improve the re-structure. The most prominent were resources and leadership, with many respondents reporting a perceived lack of project support in implementing the new structure. Even though many of the respondents believed the new structure had improved the operating systems, they perceived there was not enough resourcing to support the leaders to implement the change effectively with comments like, “the structure is much better from an operating perspective, however more project resources are needed to help the leaders embed the new structure, particularly business, administration and human resource support for team building and helping staff to accept the change” (physiotherapist). Across the three years, the feedback continued to have a strong theme around lack of resourcing and the need to provide a dedicated project or workforce development officer role(s) so the professional directors could meet all the requirements to implement the change. There was the perception from participants that the under resourcing may have impacted the potential benefits of the re-structure.

Furthermore, the participants described concerns over the professional directors being reactive and that there was a lack of consistency between professions that was reinforcing the perception by participants that the professions were siloing and doing their own thing. The following comment sums up the general sentiment of the survey feedback, “ the professional directors need to establish consistency across the professions in relation to portfolios, expectations, accountability and workloads” (psychologist).

A related theme raised by some participants was the lack of perceived capability and competence pertaining to management and leadership. The director roles were new positions created as part of the re-structure, with some being new incumbents to the organization. It was suggested the directors were not provided with the training they needed to lead and manage complex change. Many participants reinforced this point by providing feedback that for the allied health culture to improve more training was required for some of the professional directors to gain the necessary skills to do this effectively. Comments that reinforce this include, “strong directorship is required to ensure a positive culture, and to support staff to provide safe clinical care, managers need to be empathetic, visible and connect with their staff” (physiotherapist) and “leadership and management training for some professional directors on how to effectively conduct strategic planning, communicate change, lead teams etc. is needed” (social worker).

Mickan et al. ( 2019 ) supported these findings, concluding from their study of allied health managers and employees that for a structure to be successful credible, skilled, and respected allied health leaders were required to enact the systems and processes between AHPs and clinical service managers to ensure the necessary integration within clinical teams. Turato et al. ( 2022 ) findings emphasized the importance of allied health leaders developing the necessary skills in human resource management in hospitals to effectively manage relationships among people. They concluded this would improve morale and wellbeing as allied health managers and leaders would be better equipped to manage incivility through complex change. The following comments emphasize this theme, “ the professional directors should be trained in advanced communication and management skills and they must have a sense of empathy which is almost always overlooked when appointing someone into a management position however, I believe it is a key attribute in managing a large team” (dietitian) and “the allied health leaders need to better understand the needs of clinical practitioners and make an effort to plan collaboratively, in a way that supports direct clinical care” (occupational therapist) .

Conclusions

This study reports on the perceptions, thoughts, and insights of AHPs working in hospital bed-based services that have re-structured from a matrix to a centralized allied health profession-based structure and the consequential impacts on the workforce. The results from the experiences and insights of participants in this case study demonstrated that within public hospital bed-based services, a centralized allied health structure was considered superior to a matrix structure (Boyce 2001 , 2006 ; Mickan et al. 2019 ; Robinson and Compton 1996 ).

The reasons why the centralized structure was superior for AHPs working in bed-based services can be explained through the theory of organizational design, which not only highlights the importance of context, but also in taking a systematic approach to aligning structures, processes, leadership, culture, people, practices, and metrics to enable optimal performance (Burton and Obel 2018 ). Ultimately, the centralized allied health structure was a better person-context fit than the matrix structure. The main reasons being that the centralized structure supported AHPs to operate both administration and clinical practices efficiently through single lines of accountability that could effectively govern and support each profession, all of which improved the culture and morale of AHPs in bed-based services.

In contrast, the previous matrix structure was described by AHPs in this context as complex and confusing, which is reinforced by past research regarding the tell-tale signs of when a matrix structure is failing. The signs included the operational managers not having the necessary knowledge to effectively solve problems being raised by the professional managers. The operations were not coordinated, resource utilization was inefficient and costly, the clinical units were spending excessive time trying to coordinate and negotiate with each other, all of which resulted in staff feeling unhappy and confused (Burton and Obel 2018 ). Further issues described in literature and found in this case study were loss of professional identity, ambiguity, inconsistency, and frequent disagreements which further contributed to lower staff morale among AHPs (Robinson and Compton 1996 ; Turato et al 2023 ).

Hence, this case study demonstrates that an acute and sub-acute bed-based setting is different to other environments in which AHPs work, such as community and primary care settings, outside of the hospital context. In community and primary care settings, staff work autonomously as case managers with a caseload of predominantly medically stable patients that are managed by their local doctor. The pace is slower with minimal pressure to discharge patients quickly from doctors, nurses and administrators that need access to inpatient beds. Therefore, the systems, processes and people can be managed more effectively to cope with sudden changes such as emergent leave, etc. Furthermore, staff who work in these contexts are often more senior AHPs who require less supervision, training, and governance due to having years of experience and expertise. Hence, the structural issues experienced in a fast-paced dynamic hospital setting do not appear to have the same impacts in settings where AHPs work as case managers.

In this case study, the matrix structure did not deliver on the anticipated outcomes for AHPs because the systems, processes and lines of authority required for AHPs to work effectively in this context were not appropriately executed and maintained. Moreover, the climate, leadership, knowledge sharing and decision-making processes at each junction point were not clearly defined or performing (Burton and Obel 2018 ). Further, the findings demonstrate for a matrix structure to work effectively, highly competent allied health managers who have good interpersonal communication, conflict management, negotiation, and political skills to manage up and down the organization is essential (Burton and Obel 2018 ).

This is also true for the centralized structure, even with single lines of accountability, the findings highlighted that leadership/management preparation and training for each professional manager is crucial before, during and after implementation to embed the new structure, manage complex change and ensure efficient performance. The findings demonstrated that this could have done better, including the provision of skilled project resources to support the professional managers to embed the new structure. Finally, the change in professional identity for AHPs is important to consider and manage to ensure consistency within and across professions, particularly in relation to the multidisciplinary team (i.e., individual professional identity versus the overall allied health identities at the clinical unit and management level). Even though the AHPs were returning to a familiar professional identity, it became clear that this needed to be more clearly defined, particularly for those clinicians who had an overall allied health leadership role within the multidisciplinary team.

This case study provides learnings that would be worth further investigation. The first being the importance of considering the evidence and theory of organizational design during the planning phase of a new structure so that all contingencies are considered in relation to AHPs working in contexts such as bed-based services. A number of factors may have contributed to this not being done in this case study, one of which included AHPs not having an allied health role on executive that could inform and provide counsel to administrators about the potential negative outcomes of the matrix structure for AHPs working in bed-based services. Another included the transitioning from regional to tertiary level services and the commissioning team not having a good understanding of what AHPs required to function, but rather taking a global organizational design perspective (i.e., one size fits all approach), which did not consider the specific needs of each professional group and what would be required for a matrix structure to be successful.

The findings in this case study add to the literature and emphasize that the context of public hospital bed-based services is not the same as other contexts and that the way AHPs are structured does have significant impact on their functioning. AHPs in this fast-paced setting need highly specialized skills and clearly defined operational and professional governance structures, systems, and processes in place to function optimally. Furthermore, competent profession-based management and leadership is required to ensure the unique and diverse requirements of each profession is being governed appropriately so AHPs can deliver high quality and prioritized clinical care. Additionally, both executive and professional director organizational representation and advocacy for AHPs in this context is vital so AHPs can contribute positively to the organization’s objectives and performance. In conclusion, there is a need for further research that investigates and reports upon AHPs unique and dynamic professional contexts in which they operate, their position in the healthcare system and the ways in which they respond and adapt to change during organizational re-structures, including the external impacts imposed upon them (Boyce 2001 ; Callan et al. 2007 ; Porter and Wilton 2020 ; Turato et al. 2023 ). Specifically, further research regarding hospital system organizational design components pertaining to AHPs is encouraged, such as resource availability, training, staff turnover, morale, creation of a shared identity, representation, and system efficiencies, such as cost reduction.

Practical implications

This case study warns against organizations re-structuring AHPs in hospital bed-based services without considering the diverse requirements for AHPs to operate successfully in this context. Lack of due diligence in the planning phases of a new or modified organizational design can have substantial detrimental impacts on professional identity, morale and wellbeing and productivity, all of which can lead to poor or delayed outcomes for professional groups such as allied health. Furthermore, Braithewaite (2005) suggests allied health service restructurings would benefit from a combination of process and outcome evaluation measures (e.g., professional identity, retention, staff satisfaction and clinical outcomes). Hence, the findings highlight the importance of considering an evidence-based approach when proposing a new structure in healthcare organizations so critical discussions about how organizational designs can be utilized to enhance service provision by AHPs within particular contexts are prominent. This approach would provide comprehensive evidence for healthcare administrators and commissioning teams to consider before they embark on widespread organizational change (Braithwaite et al. 2005 ; Turato et al. 2023 ).

Data availability

All data have been de-identified and is stored in a workplace drive that is protected by username and password, which can be made available upon request.

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Acknowledgements

The first author would like to acknowledge the support given by the Sunshine Coast Hospital and Health Service with administrative and in-kind provisions.

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The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Ethics Committee of The Prince Charles Hospital, Queensland Health Human Research (HREC 18/QPCH/238 on 5 July 2018 with an additional approval letter received by TPCH HREC to complete a follow-up survey on 30/08/2021).

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G.T. designed the study and drafted the initial manuscript, which was reviewed and edited by J.W. & R.O. All the authors were equally involved in the analysis of the results and the discussions that led to G.T. finalising the manuscript, which J.W. and R.O reviewed / edited before G.T. submitted to the journal.

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Allied health survey

The new centralized allied health structure for hospital bed-based services went live on 28 January 2020. It was decided the best way to gain feedback about how the new structure is progressing was by an annual confidential survey and follow-up meetings with each profession. We are now asking for your feedback as your opinion is highly valued and very important. The survey will take about 15–20 min to complete; thank you very much for taking the time to answer the following questions:

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Below are the aims and reasons for implementing the change. Please provide your feedback on which of the aims you believe the new structure is achieving and which require more work. Please be specific and provide as much detail as you can about why an aim is being achieved or not achieved.

Reduced patient risk through an enhanced discipline lens

Decreased confusion over reporting lines and improved communication to allied health staff

Decreased duplication of tasks for allied health staff within each service group, e.g., quality, education and training programs, supervision, rostering, mandatory training, and workforce planning tasks such as leave management

Improved flexibility to mobilize the allied health workforce based on clinical priority

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Turato, G., Whiteoak, J. & Oprescu, F. The insights of allied health professionals transitioning from a matrix structure to a centralized profession-based structure within a public hospital setting. J Org Design (2024). https://doi.org/10.1007/s41469-024-00178-w

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Vaccine decision-making among pregnant women: a protocol for a cross-sectional mixed-method study in Brazil, Ghana, Kenya and Pakistan

Jessica L Schue Roles: Data Curation, Project Administration, Software, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing Prachi Singh Roles: Data Curation, Project Administration, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing Berhaun Fesshaye Roles: Data Curation, Project Administration, Software, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing Emily S Miller Roles: Data Curation, Project Administration, Software, Writing – Original Draft Preparation, Writing – Review & Editing Shanelle Quinn Roles: Data Curation, Writing – Review & Editing Ruth A Karron Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing Renato T Souza Roles: Data Curation, Methodology, Project Administration, Resources, Software, Supervision, Writing – Review & Editing Maria Laura Costa Roles: Supervision, Writing – Review & Editing Jose Guilherme Cecatti Roles: Supervision, Writing – Review & Editing Kwasi Torpey Roles: Methodology, Project Administration, Resources, Supervision, Writing – Review & Editing Caroline Dinam Badzi Roles: Project Administration, Supervision, Writing – Review & Editing Emefa Modey Roles: Supervision, Writing – Review & Editing Chris Guure Roles: Supervision, Writing – Review & Editing Ferdinand Okwaro Roles: Methodology, Project Administration, Resources, Supervision, Writing – Review & Editing Marleen Temmerman Roles: Resources, Supervision, Writing – Review & Editing Saleem Jessani Roles: Methodology, Project Administration, Resources, Supervision, Writing – Review & Editing Sarah Saleem Roles: Project Administration, Resources, Supervision, Writing – Review & Editing Muhammad Asim Roles: Project Administration, Supervision, Writing – Review & Editing Sidrah Nausheen Roles: Project Administration, Supervision, Writing – Review & Editing Haleema Yasmeen Roles: Project Administration, Supervision, Writing – Review & Editing Grace Belayneh Roles: Project Administration, Writing – Review & Editing Vanessa Brizuela Roles: Conceptualization, Methodology, Project Administration, Resources, Writing – Review & Editing Sami Gottlieb Roles: Conceptualization, Methodology, Project Administration, Resources, Writing – Review & Editing Rupali J Limaye Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Resources, Writing – Original Draft Preparation, Writing – Review & Editing

Maternal immunization is a critical strategy to prevent both maternal and infant morbidity and mortality from several infectious diseases. When the first COVID-19 vaccines became available during the pandemic, there was mixed messaging and confusion amongst the broader public and among those associated with health care systems about the recommendations for COVID-19 vaccinations in pregnancy in many countries. A multi-country, mixed-methods study is being undertaken to describe how vaccine decision-making occurs amongst pregnant and postpartum women, with a focus on COVID-19 vaccines. The study is being conducted in Brazil, Ghana, Kenya, and Pakistan. In each country, participants are being recruited from either 2 or 3 maternity hospitals and/or clinics that represent a diverse population in terms of socio-economic and urban/rural status. Data collection includes cross-sectional surveys in pregnant women and semi-structured in-depth interviews with both pregnant and postpartum women. The instruments were designed to identify attitudinal, behavioral, and social correlates of vaccine uptake during and after pregnancy, including the decision-making process related to COVID-19 vaccines, and constructs such as risk perception, self-efficacy, vaccine intentions, and social norms. The aim is to recruit 400 participants for the survey and 50 for the interviews in each country. Qualitative data will be analyzed using a grounded theory approach. Quantitative data will be analyzed using descriptive statistics, latent variable analysis, and prediction modelling. Both the quantitative and qualitative data will be used to explore differences in attitudes and behaviors around maternal immunization across pregnancy trimesters and the postpartum period among and within countries. Each country has planned dissemination activities to share the study findings with relevant stakeholders in the communities from which the data is collected and to conduct country-specific secondary analyses.

COVID-19, pregnancy, maternal immunization, Brazil, Ghana, Kenya, Pakistan

Introduction

Vaccination during pregnancy can be recommended for a variety of reasons: to prevent disease in the pregnant woman, to protect the fetus and prevent pregnancy complications, and to decrease morbidity and mortality in women, newborns and infants. Maternal immunization can compensate for newborns’ inexperienced immune systems, by allowing the mother to transmit protective antibodies to her baby via the placenta or breast milk ( Röbl-Mathieu et al. , 2021 ). Additionally, antibodies transferred from parent to child either during pregnancy or after childbirth play a crucial role in decreasing morbidity and mortality in newborns and infants ( Marchant et al. , 2017 ). In the case of COVID-19, a meta-analysis found that immunization reduces the risk of hypertensive disorders in pregnancy, reduces the likelihood of caesarean section, and reduces a newborn’s risk of being admitted to the neonatal intensive care unit ( Fernández-García et al. , 2024 ). Vaccinating pregnant women is currently recommended for a variety of diseases, including tetanus, pertussis, influenza, hepatitis B and COVID-19, and additional maternal vaccines are expected to be introduced in the coming years ( Geoghegan et al. , 2022 ; Limaye et al. , 2024 ). Maternal vaccines can serve as a crucial prevention tool for common diseases in infancy, such as Group B streptococcus, where currently available screening and/or treatment are complex and may be further challenged by health system constraints, or where births frequently occur outside of health facilities ( Rao & Khanna, 2020 ).

However, despite the congruence of evidence and policies supporting the safety and benefits of several maternal vaccines, there remains considerable disparity in their use and coverage both among and within countries ( Laenen et al. , 2015 ; Sobanjo-ter Meulen et al. , 2019 ). Attitudes and decision-making regarding maternal immunizations are complex; pregnant women must weigh the risk-benefit ratio for both themselves and their fetus ( Cox et al. , 2023 ). There are a multitude of factors that influence maternal immunization decision-making, among these are the opinions and recommendations of family and healthcare providers ( Cox et al. , 2023 ; Kilich et al. , 2020 ; Limaye et al. , 2022 ). Immunization decision-making while pregnant and in the postpartum period is also influenced by other factors, such as risk perception, knowledge of the disease and vaccine, social norms, and self-efficacy, to name a few ( Cox et al. , 2023 ; Kilich et al. , 2020 ).

During the height of the pandemic, pregnant women with COVID-19 were shown to be at greater risk of severe disease, hospital admission, and pre-term birth ( Allotey et al. , 2020 ; Smith et al. , 2023 ). But with the exclusion of pregnant individuals from the vast majority of COVID-19 vaccine trials, there was limited early vaccine safety data for this population and large variation in countries’ initial policy recommendations for COVID-19 vaccine use in pregnancy ( Hameed et al. , 2023 ; Zavala et al. , 2022 ). Over time, the availability of additional vaccine safety and effectiveness data for pregnant women led to more countries recommending or permitting the use of COVID-19 vaccines during pregnancy ( Hameed et al. , 2023 ; Prasad et al. , 2022 ; Wang et al. , 2022 ; Zavala et al. , 2022 ). But these varying and changing policies gave considerable latitude in the way local advisory groups and managers interpreted vaccine recommendations. The World Health Organization (WHO) now recommends a dose of COVID-19 vaccine to be given during each pregnancy ( World Health Organization, 2023 ). However, even where COVID-19 vaccination during pregnancy has been strongly encouraged, uptake has been sluggish ( Blakeway et al. , 2022 ; Goncu Ayhan et al. , 2021 ; Razzaghi et al. , 2021 ; Shamshirsaz et al. , 2022 ).

To better inform demand generation and communication strategies for vaccines in pregnancy, it is crucial to address several knowledge gaps and gather information from pregnant and postpartum women to understand factors that influence their vaccine decision-making process. This paper describes the protocol and early implementation for a mixed methods study to better understand how COVID-19 vaccine decision-making occurs, including attitudes about maternal immunization more broadly, among pregnant and postpartum women in Brazil, Ghana, Kenya, and Pakistan. The study includes five objectives ( Figure 1 ) with an aim to strengthen guidance, policy, and programs related to COVID-19 vaccination of pregnant women, especially in low- and middle-income countries.

Figure 1. Objectives for a multi-country, mixed methods, cross-sectional study.

Study design.

This descriptive study aims to understand COVID-19 vaccine decision-making amongst pregnant women. The study objectives are being addressed using mixed methods across four countries consisting of cross-sectional quantitative surveys among pregnant women and qualitative semi-structured in-depth interviews with both pregnant and postpartum women. The multi-country study team consists of an interdisciplinary group of researchers and policy makers with expertise in vaccine and behavioral science, obstetrics and nursing, maternal and child health, epidemiology, and biostatistics, as well as mixed method study design and data collection expertise in both quantitative and qualitative methods.

This document uses the term ‘pregnant women’. Although most people who are or can get pregnant are cisgender women who were born and identify as female, these topics are also relevant to the experiences of transgender men and other gender diverse people who may have the capacity to become pregnant.

Study locations

Each of the four countries included in this study was chosen based on participation in a WHO-led multi-country cohort study of COVID-19 in pregnancy ( Broutet & Thorson, 2022 ) and various other factors when it was conceptualized in 2021, including geographic diversity, varying COVID-19 vaccine policies related to pregnant women, diversity of COVID-19 vaccine products available, phase of the COVID-19 epidemic, and country interest. Study locations within each country vary by clinic type, clinic level, and the population served. Within each country, sites were selected to ensure inclusion of perspectives from people living in urban and rural settings, from high and low socio-economic status, and/or seeking care at private or public clinics. ( Figure 2 )

Figure 2. Study locations and clinic names in Brazil, Ghana, Kenya, and Pakistan.

Brazil first introduced the COVID-19 vaccine in January 2021, and vaccination was only recommended for pregnant and lactating women with comorbidities who underwent a risk-benefit assessment by their physicians starting in March 2021 ( Covas et al. , 2023 ; Secretaria Extraordinária de Enfrentamento à COVID-19 Gabinete, 2021 ). Following the death of a pregnant Brazilian woman after receiving a dose of the AstraZeneca/Oxford (AZO) vaccine, the AZO vaccine was prohibited for use for pregnant women in May 2021 ( Covas et al. , 2023 ; Fonseca & Brito, 2021 ; Kobayashi et al. , 2022 ). Starting in September 2021, the Brazilian Ministry of Health (MoH) recommended Pfizer/BioNTech and Sinovac for all pregnant and lactating individuals, and the MoH continues to include pregnant and lactating women in their recommended COVID-19 vaccination schedules.

Study sites in Brazil include two maternity hospitals in São Paulo, CAISM/Unicamp Hospital in Campinas, and Hospital Universitario de Jundiaí in Jundiaí, both public hospitals caring for pregnant women from urban and semirural areas and covered by the National Health Systems (SUS) and also private insurances.

Ghana was the first country to receive vaccines from the COVAX Facility in February 2021 ( UNICEF & World Health Organization, 2024 ). However, pregnant women were not included in the initial vaccine rollout, which focused on health workers and those with comorbidities, nor in the next two phases which expanded recommendations to include all adults over 18 years throughout 2021 ( The World Bank, 2021 ). Ghana only recommended COVID-19 vaccination for pregnant and lactating individuals after January 20, 2022, following updated guidance from WHO ( Berman Institute of Bioethics & Center for Immunization Research, 2022 ) .

Study sites in Ghana are in the Greater Accra region. Three hospitals are included that represent regional, district, and secondary levels of care. These include Tema General Hospital, Ga West Municipal Hospital, and Shai-Osudoku District Hospital, each serving urban, mix of urban and rural, and rural populations, respectively.

Similarly to Ghana, Kenya introduced the COVID-19 vaccine with 1.02 million doses of COVAX-provided AZO vaccines in March 2021 ( World Health Organization, 2021a ). Pregnant and lactating individuals were explicitly excluded from vaccination campaigns from February 2021 to January 2022, when the MoH revised its directives and recommended all COVID-19 vaccine types and brands for pregnant and lactating women ( Berman Institute of Bioethics & Center for Immunization Research, 2022 ; National Vaccine & Immunization Program, 2021 ).

In Kenya, two antenatal and postnatal clinics in Nairobi were chosen: Aga Khan University Hospital Nairobi, a private referral hospital serving middle and higher socio-economic classes, and Pumwani Maternity Hospital, a public referral hospital that serves largely lower socio-economic status classes.

The first COVID-19 vaccines introduced to Pakistan were half a million doses of the Sinopharm vaccine donated by China in February 2021 ( Siddiqui et al. , 2021 ). Other COVID-19 vaccine brands, such as AZO were introduced in Pakistan via the COVAX Facility starting in May 2021 ( World Health Organization, 2021b ). Unlike Brazil, Ghana, and Kenya, pregnant and lactating women were recommended for vaccination against COVID-19 from the beginning of the vaccine rollout, with the Special Minister to the Prime Minister on Health strongly urging all pregnant and lactating women to receive the vaccine following the deaths of two unvaccinated pregnant women from COVID-19 in August 2021 ( Berman Institute of Bioethics & Center for Immunization Research, 2022 ; Jajja, 2021 ).

Pakistan study sites include two hospitals in Karachi, a community private hospital, The Aga Khan Hospital for Women and Children, Kharadar, serving mostly people of lower and higher middle socio-economic community and Jinnah Postgraduate Medical Center, a tertiary care public hospital serving mostly low and lower-middle socio-economic community.

Sample size

For the qualitative component of the study, for each country, we aim to interview 25 pregnant and 25 postpartum women, for a total of 50 in-depth interviews per country, taking into consideration when data saturation might be reached. For those pregnant, we aim to interview approximately equal samples by trimester (1st, 2nd, and 3rd). For the quantitative component of the study, we aim to administer a survey to 400 pregnant women in each country to evaluate the proportion of participants with a given attitude and the comparison of attitude proportions by vaccination status. The sample size was determined with the following objectives and assumptions: 1) to evaluate the proportion of pregnant women with an attitude with 95% confidence intervals and 5% margin of error, assuming 50% of the population has the attitude (to provide maximum variability), and an unknown population size; 2) to compare two proportions with 95% confidence interval and 80% power, assuming 50% of the group 1 has the attitude and 40% of group 2 has the attitude. An unknown population size was assumed to facilitate evaluation across countries and the uncertainty in patient volume across facilities that sampling is occurring in.

In three of the four countries, Brazil, Kenya, and Pakistan, the goal is to sample approximately equal numbers of pregnant women across the three trimesters of pregnancy. In Ghana, due to cultural beliefs about seeking care in the 1st trimester, the target for the 1st trimester was decreased. In Brazil, Kenya, and Pakistan, an equal representation is being sought from each participating study clinic for both components of the study overall, but not necessarily for the trimester subgroup targets. All countries’ sample size and subgroup targets are listed in Table 1 .

Table 1. Matrix of protocol components.

	SITES	SURVEY SAMPLE SIZE	IDI SAMPLE SIZE	SAMPLING STRATEGY	REMUNERATION
BRAZIL	2 maternity hospitals in São Paulo State	1st Tri:133 2nd Tri: 133 3rd Tri: 134	1st Tri: 8 2nd Tri: 9 3rd Tri: 8 Post: 25	Systematic	none
GHANA	3 maternity hospitals in Greater Accra Region	1st Tri: 40 2nd Tri: 180 3rd Tri: 180	1st tri: 8 2nd tri: 9 3rd tri: 8 Post: 25	Consecutive	70 GHS (~6 USD)
KENYA	2 referral maternity hospitals in Nairobi	1st Tri: 133 2nd Tri: 133 3rd Tri: 134	1st tri: 8 2nd tri: 9 3rd tri: 8 Post: 25	Consecutive	500 KES (~5 USD)
PAKISTAN	2 (1 maternity and 1 referral) hospitals in Karachi	1st Tri: 133 2nd Tri: 133 3rd Tri: 134	1st tri: 8 2nd tri: 9 3rd tri: 8 Post: 25	Consecutive	Meal box (value ~5 USD)

IDI: in-depth interview, Tri: pregnancy trimester, Post: post-partum, GHS: Ghana Cedi, USD: US Dollar, KES: Kenyan Shilling

Recruitment

The recruitment strategy varies by country. Most sites are using a consecutive sampling method, approaching every eligible participant until they reach subgroup targets, alternating between the survey and the interview. In Brazil, both study sites are using systematic sampling, or sampling every n th person at the antenatal or postnatal clinics. The value of n is based on the patient volume of the clinic. At all three sites in Ghana, both sites in Kenya, and both sites in Pakistan, a consecutive sampling method of women in the clinic’s waiting area is used. In Brazil, participants can join both components of the study (quantitative and qualitative). In Ghana, Kenya, and Pakistan, participants can join only one component of the study. Three of the countries, Ghana, Kenya, and Pakistan, are providing some type of remuneration to reimburse participants’ travel cost or thank you gift to participants. Brazil is not providing any renumeration due to ethical constraints. In Brazil, reimbursement is only accepted if extra costs are incurred by participating in the study, which do not apply to this study.

Recruitment starts with study staff approaching potentially eligible persons in the waiting or reception area of the health care facility. The study staff reads a study recruitment script to the potential participant in a semi-private area. At the end of the recruitment script is an eligibility screen. Eligibility in this study is broad and include five criteria: 1) pregnant or up to six weeks postpartum (interview only), 2) study interest, 3) age of 18 or older (or an emancipated minor in Brazil only), 4) fluent in the local language (or English if applicable), and 5) knowledge of the COVID-19 vaccine. After passing the eligibility questions, the script also asks for their trimester of pregnancy and COVID-19 vaccination status. The trimester of pregnancy question is used to fill the trimester quotas defined in the sample size targets. While there are no sample size targets for vaccinated and unvaccinated within any of the countries, the study aspires to obtain a representation of vaccinated and unvaccinated participants across all four countries. If eligibility is met and the sub-group is needed, the study staff member invites the participant to join. If the prospective participant agrees, informed consent occurs in a private location followed by data collection. Study staff ensure that the participant’s clinic appointment is not missed due to study participation and pauses any study activities if the participant is called to see a provider. Study participation only restarts after the visit is complete.

Data collection

Data collection instruments, surveys and interview guides, were developed through an iterative process that started with a review of the literature, including a review of relevant instruments ( Alagarsamy et al. , 2022 ; Betsch et al. , 2018 ; Bronfenbrenner, 1979 ; Larson et al. , 2015 ; Rosenstock et al. , 1988 ). They were then reviewed by country teams, and pre-tested in each country among data collectors before finalization. Each of the four country teams was able to amend the questionnaire and interview guides to better align to local contexts while efforts were made to ensure sufficient data would be available for pooled, cross-country analyses.

The questionnaire was developed to identify attitudinal, behavioral, and social correlates of vaccine uptake and we sought to use validated items or adapt validated items ( Alagarsamy et al. , 2022 ; Betsch et al. , 2018 ; Bronfenbrenner, 1979 ; Larson et al. , 2015 ; Rosenstock et al. , 1988 ). The questionnaire contains questions on socio-demographics, attitudes toward COVID-19 vaccines, COVID-19 vaccine knowledge and information sources, COVID-19 vaccine behaviors and intentions, and general attitudes towards vaccination in pregnancy, including receipt of other maternal vaccines that might become available in the future.

The in-depth interview guide includes topics on the decision-making process related to COVID-19 vaccines, including risk perception, self-efficacy, vaccine intentions, and social norms, etc. Two interview guides were developed, one for pregnant and one for postpartum participants.

Questions related to the following constructs are included: influences of decision-making, self-efficacy, norms, risk perception, knowledge of disease, knowledge of vaccines, information sources, and vaccine hesitancy.

In Brazil and Pakistan, questionnaires and interviews are done by two separate data collection teams. In Ghana and Kenya, both components of the study are done by one data collection team. All countries are digitally audio recording the qualitative interviews; Pakistan is also including a note-taker in each of the interviews. Brazil and Kenya are using paper-based data collection and double data entry for all questionnaires. Ghana and Pakistan are using tablet-based data collection using either the REDCap Mobile Application or REDCap’s web-based data entry interface. All study data, including in-depth interview audio files, are managed and stored using REDCap electronic data capture tools hosted at JHU ( Harris et al. , 2009 ; Harris et al. , 2019 ). REDCap (Research Electronic Data Capture, Nashville, TN, USA: https://projectredcap.org ) is a secure, web-based software platform designed to support data capture for research studies that is available to non-profit groups who join the consortium. Alternatives that are also free for non-profit groups include Kobo Toolbox (Cambridge, MA. USA: https://www.kobotoolbox.org ) and a self-managed version of Open Data Kit (Seattle, WA, USA: https://getodk.org ). Data collection is done in Brazilian Portuguese in Brazil; Ga, Twi, or English in Ghana; Kiswahili or English in Kenya; and Urdu or English in Pakistan. Both components of the study (questionnaires and interviews) are estimated to take 30-60 minutes to complete, inclusive of the time needed for the consent process.

Data analysis and statistical plan

In Brazil, Kenya, and Pakistan, audio files from qualitative interviews are transcribed in the language they were completed in and then translated to English. In Ghana, transcripts are typed directly into English given the colloquial nature of Ga and Twi languages. Any notes that are taken during the interview are incorporated during transcription. All transcriptions and translations undergo review by an independent study team member as part of standard practice. Questionnaire data are reviewed and cleaned following a standardized data cleaning procedure. No personally identifying information (PII) is captured during the questionnaire and while no PII is intentionally captured during interviews, an anonymization procedure is being followed during transcription to ensure no PII is included in the final transcripts.

For the qualitative aim of the study, a grounded theory approach is followed for data processing and analyses. Each country undergoes an independent and iterative open coding process with representatives from the country team, JHU, and WHO. A minimum of two open coding sessions are conducted to develop and refine a codebook for analysis. Participants for each open coding session review the same random selection of transcripts and through an inductive coding approach, a final codebook is generated. After all countries complete their codebooks, a final code structure and thematic categories will be selected; these will be applied to each transcript in the final coding process. All transcript coding is done with ATLAS.ti ( Smit, 2002 ). An alternative open access qualitative coding platform is Taguette, https://www.taguette.org ( Rampin & Rampin, 2021 ).

A-priori analyses for pooled cross-country qualitative data fall into three topic areas, outlined in Table 2 . For the quantitative aim of the study, there are four main topic areas for planned analyses and the questionnaire was structured around these four themes ( Table 2 ). The primary aims of this study are descriptive and are covered by the planned analyses of both the qualitative and quantitative components of the study. Country specific analyses will be defined and led by each of the country teams.

Table 2. Planned analyses for pooled, cross-country data.

ANALYSIS TOPIC AREA	ANALYSIS TYPE/ FRAMEWORK	STUDY COMPONENT
COVID-19 vaccine knowledge and information sources	Descriptive	Quantitative
COVID-19 vaccine intentions and behaviors during pregnancy	Descriptive	Quantitative
Attitudes toward future maternal vaccines	Descriptive	Quantitative
Attitudes toward COVID-19 vaccines	Descriptive	Quantitative
COVID-19 vaccination awareness and behaviors during pregnancy	Grounded Theory	Qualitative
COVID-19 awareness, risk perception, and mitigation	Grounded Theory	Qualitative
Vaccination experiences generally and specifically in pregnancy	Grounded Theory	Qualitative

Ethical review

Ethical review and approval for the 4-country study was sought from the Johns Hopkins Bloomberg School of Public Health Institutional Review Board (Ref. IRB00020864, approved 2023-07-06; Ref. IRB00020850, approved 2023-09-12; Ref. IRB00020861, approved 2023-09-27; Ref. IRB00020866, approved 2024-02-01), and the World Health Organization’s Research Ethics Review Committee (Ghana: Ref. CERC.0193A, approved 2023-06-05; Kenya: Ref. CERC.0193B, approved 2023-06-19; Pakistan: Ref. CERC.0193C, approved 2023-09-19) or the Pan American Health Organization (Brazil: Ref. PAHOERC.0633.01, approved 2023-03-24),. Each country protocol also underwent scientific review through the WHO/HRP Research review research panel (Switzerland). Individual country teams sought and obtained approvals for each country-level research plan with the following entities: Committee of Research Ethics from the University of Campinas (Brazil: Ref. 63968222.1.1001.5404, approved 2023-04-10), Jundiaí University Institutional Review Board (Brazil: Ref. CAAE 63968222.1.2001.5412, approved 2023-07-07), Ghana Health Service Ethics Review Committee (Ghana: Ref. 028/03/23, approved 2023-05-23), The Aga Khan University’s Institutional Scientific and Ethics Committee (Kenya: Ref. 2023/ISERC-17, approved 2023-06-19), Pumwani maternity hospital ethics review committee (Kenya: Ref. PMH/CEO/76/0785/2023, approved: 2023-12-13), the National Council for Science Technology and Innovation (Kenya: Ref. NACOSTI/P/23/29152, approved 2023-09-27), Nairobi County Research and Development Committee (Kenya: Ref. NCC/CS/RPD/84/2023, approved 2023-11-27), National Bioethics Committee (Pakistan: Ref. No.4-87/NBCR-1029/23, approved 2024-01-03), and The Aga Khan University Institutional Ethics Review Committee (Pakistan: Ref. 2023-8633-25854, approved 2023-07-27), and the Institutional Review Board at Jinnah Postgraduate Medical Center (Pakistan: Ref. F.2-81/2023-GENL/182/JPMC, approved 2023-12-14).

All study staff were trained in human subjects’ research ethics as well as qualitative and/or quantitative data collection during a three-day country-specific training session. Qualitative training included interviewing techniques to reduce bias, transcription, and translation. Participants in all four countries were recruited in semi-private areas of the clinic and underwent an informed consent process with trained study team members in private areas. All four countries used written informed consent, using alternatives for illiterate participants as allowed by each country. A transcription standardized operating procedure was developed and will be used by all country teams to ensure that all personally identifying information is removed from final transcripts. Standard data cleaning procedures will also be used by all countries.

Dissemination plans

The results of the research will be submitted to peer-reviewed publications in specialized journals and to scientific dissemination meetings and congresses.

In Brazil, at the national and regional level, dissemination will be done through conferences and reports to policy makers to inform strategies and gaps related to the topic. The investigators involved in the study in Brazil are part of National and Regional policy-making committees in maternal and perinatal health and they will work with local partners and stakeholders to develop local dissemination plans. In Ghana, prior to publication, preliminary findings will be disseminated to study facilities. The data and findings from the study will also be disseminated to the Ghana Health Service and other key stakeholders to inform context-specific guidelines for vaccine decision-making and uptake among pregnant and postpartum women in Ghana.

In Kenya, the results from this project will be used for advocacy with health managers and policy makers focusing on the best demand generation and communication strategies to improve the uptake of COVID-19 vaccines for pregnant women. The research team will disseminate the findings in an organized forum comprising different cadres of ministry of health personnel at policy and practice level as well as other relevant stakeholders involved with health care service provision in Kenya. Furthermore, the research team will develop policy briefs for the policy makers and peer reviewed publications in international journals for wider dissemination. In Pakistan, the research findings will be shared with relevant stakeholders, including policymakers and leading obstetricians, through peer-reviewed journals, provincial/national-level seminars, and the meetings of the Society of Obstetricians and Gynecologists of Pakistan (SOGP). The aim is to maximize the visibility and impact of the research findings and contribute to informed decision-making and improved healthcare practices in Pakistan.

Conclusion/discussion

With COVID-19 vaccine uptake during pregnancy lagging behind its recommendations for use, the lessons learned from this study can help inform future COVID-19 vaccine delivery and communications strategies. In addition, as several new maternal vaccines are in the late stages of development or the earliest stages of implementation, this study can also help to inform future vaccine introductions. These findings will also be useful for global policy makers to understand how important factors related to maternal vaccine uptake vary by location, as well as contextual factors that should be considered in program implementation. For policy makers at the national and local level, these data can inform strategies to improve maternal vaccination acceptance and coverage and encourage execution of similar studies in other settings to learn about specific local contexts.

Study status

Data collection was completed in all countries as of 25 May 2024. Data processing, cleaning, and analysis are underway. No data has been published from this study at the time of writing. Results will be presented in subsequent publications.

Ethics and consent

Ethical review and approval for the 4-country study was sought from the Johns Hopkins Bloomberg School of Public Health Institutional Review Board (Ref. IRB00020864, approved 2023-07-06; Ref. IRB00020850, approved 2023-09-12; Ref. IRB00020861, approved 2023-09-27; Ref. IRB00020866, approved 2024-02-01), and the World Health Organization’s Research Ethics Review Committee (Ghana: Ref. CERC.0193A, approved 2023-06-05; Kenya: Ref. CERC.0193B, approved 2023-06-19; Pakistan: Ref. CERC.0193C, approved 2023-09-19) or the Pan American Health Organization (Brazil: Ref. PAHOERC.0633.01, approved 2023-03-24),. Each country protocol also underwent scientific review through the WHO/HRP Research review research panel (Switzerland).Individual country teams sought and obtained approvals for each country-level research plan with the following entities: Committee of Research Ethics from the University of Campinas (Brazil: Ref. 63968222.1.1001.5404, approved 2023-04-10), Jundiaí University Institutional Review Board (Brazil: Ref. CAAE 63968222.1.2001.5412, approved 2023-07-07), Ghana Health Service Ethics Review Committee (Ghana: Ref. 028/03/23, approved 2023-05-23), The Aga Khan University’s Institutional Scientific and Ethics Committee (Kenya: Ref. 2023/ISERC-17, approved 2023-06-19), Pumwani maternity hospital ethics review committee (Kenya: Ref. PMH/CEO/76/0785/2023, approved: 2023-12-13), the National Council for Science Technology and Innovation (Kenya: Ref. NACOSTI/P/23/29152, approved 2023-09-27), Nairobi County Research and Development Committee (Kenya: Ref. NCC/CS/RPD/84/2023, approved 2023-11-27), National Bioethics Committee (Pakistan: Ref. No.4-87/NBCR-1029/23, approved 2024-01-03), and The Aga Khan University Institutional Ethics Review Committee (Pakistan: Ref. 2023-8633-25854, approved 2023-07-27), and the Institutional Review Board at Jinnah Postgraduate Medical Center (Pakistan: Ref. F.2-81/2023-GENL/182/JPMC, approved 2023-12-14).

All four countries used written informed consent, using alternatives for illiterate participants as allowed by each country

Data availability

Underlying data.

No data are associated with this article. Data collected during this study will be made available when results are published as allowed by the data sharing policies of the individual institutions that led data collection in each of the four participating countries.

Extended data

Open Science Framework: Exploring Knowledge, Attitudes, and Practices Related to Vaccine Decision-Making among Pregnant People, DOI 10.17605/OSF.IO/G3YD2 ( Schue, 2024 ).

This project contains the following extended data:

Consent Form Interview: Written consent form for interview participants.

Consent Form Survey: Written consent form for survey participants.

Master Post-Pregnancy IDI Guide: Semi-structured interview guide for post-pregnant women

Master Pregnancy IDI Guide: Semi-structured interview guide for pregnant women

Survey Master: Survey instrument for pregnant women

License: CC-By Attribution 4.0 International

Acknowledgments

We would like to thank Anna Thorson (UNDP-UNFPA-UNICEF-WHO-World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP), Department of Sexual and Reproductive Health and Research, WHO) and Ibukun Abejirinde (Dalla Lana School of Public Health, University of Toronto) for their support in the initial design of the study and ongoing administrative support of this project. We would like to thank the staff at each of the clinics where this study is conducted and the participants that contribute their time and thoughts. The named authors alone are responsible for the views expressed in this publication and do not necessarily represent the decisions or the policies of the UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) or the World Health Organization (WHO) or any of their affiliated institutions.

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Community Action and Analysis Plan: Guidance and Resources for Community Care Hubs to Address Health-Related Social Needs Based on Lessons from North Carolina

Project Report

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Executive Summary

Addressing unmet health-related social needs (HRSNs) is critical to improving health outcomes and requires well-coordinated systems of health and social care. Community Care Hubs (CCHs) – community-centered backbone organizations that coordinate care between the health and social sectors – play a critical role in developing these coordinated systems of care. CCHs are designed to organize, support, and provide centralized infrastructure for community-based organizations (CBOs) and other service providers that are participating in cross-sectoral partnerships.

CCHs serve a critical role in their communities, but the scope and capacity of CCHs can vary. Given this, there is a need for additional guidance and support to start, scale, and sustain the work of CCHs. The purpose of this Community Action and Analysis Plan is to highlight practical steps that future and current CCHs can take to start, scale, and sustain efforts to address HRSNs. From our research, we identified six major competency areas for CCHs. Below is a high-level summary of the main steps that CCHs can take across the six competencies outlined in this document. This is meant to serve as both a self-assessment tool and a guide through the document’s main points. Within each section, we describe examples of data, resources, and partnerships that can support these efforts, including both foundational skills and advanced steps. Readers can choose to review and focus on topics that are of particular interest and are directed to external sources to read more when such external resources exist.

Read the full text here .

Duke-Margolis Authors

Katie Huber, MPH

Policy Research Associate

Brianna Van Stekelenburg, MPP

Research Associate

Veronica Marshall-Kirk

2024 Margolis Intern

Rebecca Whitaker, PhD, MSPH

Research Director, North Carolina Health Care Transformation Core Faculty Member Senior Team Member Anti-Racism and Equity Committee Member

Robert Saunders, PhD

Senior Research Director, Health Care Transformation Adjunct Associate Professor Executive Team Member Margolis Core Faculty

William K. Bleser, PhD, MSPH

Research Director, Health Care Transformation for Social Needs and Health Equity Senior Team Member Anti-Racism and Equity Committee Member

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Substance Use Stigma and Community Drug Checking: A Qualitative Study Examining Barriers and Possible Responses

Samantha davis.

1 Canadian Institute for Substance Use Research, University of Victoria, P.O. Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada

Bruce Wallace

2 School of Social Work, University of Victoria, P.O. Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada

Thea Van Roode

Dennis hore.

3 Department of Chemistry, University of Victoria, P.O. Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada

4 Department of Computer Science, University of Victoria, P.O. Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada

Associated Data

Not applicable.

Background: Community drug checking is an emerging response to the overdose crisis. However, stigma has been identified as a potential barrier to service use that requires investigation. Methods: A qualitative study explored how best to implement drug checking services to the wider population including those at risk of overdose. A secondary analysis of 26 interviews with potential service users examine how stigma may be a barrier to service use and strategies to address this. A Substance Use Stigma Framework was developed to guide analysis. Results: Drug checking is operating in a context of structural stigma produced by criminalization. People fear criminal repercussions, anticipate stigma when accessing services, and internalize stigma resulting in shame and avoidance of services. A perceived hierarchy of substance use creates stigma results in stigma between service users and avoidance of sites associated with certain drugs. Participants frequently recommended drug checking to be located in more public spaces that still maintain privacy. Conclusions: Criminalization and societal views on substance use can deter service use. Strategies to mitigate stigma include employment of people with lived and living experience from diverse backgrounds; public yet private locations that preserve anonymity; and normalization of drug checking while decriminalization could address the root causes of stigma.

1. Introduction

The illicit drug overdose crisis is an ongoing epidemic that continues to take lives at unprecedented rates. British Columbia, Canada has been identified as the epicenter in Canada, where approximately seven deaths per day are linked to unregulated substances most often including fentanyl [ 1 ]. Increasingly drug checking is being pursued as a potential response to the rapid emergence of synthetic opioids including fentanyl and the high rates of overdose related to the unpredictably of the unregulated drug market [ 2 , 3 , 4 , 5 ]. In Victoria, British Columbia, community drug checking sites have been implemented as a public health response to the ongoing overdose crisis and the unregulated illicit drug market through a community-based research project called the Vancouver Island Drug Checking Project [ 6 ]. In addition to providing anonymous, confidential, and non-judgmental drug checking services with rapid results, the project has conducted qualitative research aimed to better understand drug checking as a potential harm reduction response to the illicit drug overdose crisis and the unregulated illicit drug market [ 7 , 8 ]. The goal of the research was to hear about people’s experiences with drug checking, including people who use drugs, their family, friends, peers, and/or people who make or distribute drugs [ 7 , 8 ]. The central intention of the interviews was to gain a well-informed understanding of how people think about drug checking from a range of social locations, with the goal of making drug checking widely accessible, safe, and effective for all. Stigma related to substance use emerged as a dominant theme in our research that operated as a critical barrier that needs to be better understood in order to inform future implementation.

There is overall recognition of the need to address substance use stigma (SUS) as integral to responses to the illicit drug overdose crisis [ 9 , 10 , 11 ]. SUS is generally defined as the stigmatization of people who use drugs (PWUD) for using illicit substances [ 12 ]. In his early and well-known work on stigma, Goffman [ 13 ] identified stigma as a relationship where stigmatized qualities or stereotypes are applied to some by others, resulting in the stigmatized person being viewed as “tainted” or “discounted”. Understandings of stigma have shifted from Goffman’s interpretations of stigma as static to thinking of stigma as an ever evolving social phenomenon [ 14 ]. According to Tsai et al. [ 9 ], stigma is defined as a “process wherein people with a particular social identity are labeled, stereotyped, and devalued, unfolding within the context of unequal and often pre-existing power-relations, leading to discriminatory behaviour against people with the stigmatized identity”. According to Tyler [ 15 ], the most common form of violence in democratic societies is stigma despite rarely being considered a form of violence or abuse of power.

Moreover, existing literature has identified that attention is often focused on stigma at the individual level, which overlooks the realities of social, political and cultural contexts [ 16 , 17 ]. However, stigma can operate at different levels throughout society and function as a tool to control and oppress [ 18 ]. This has been referred to as “stigma-power” and is typically theorized as the stigmatizer having motivations to maintain status, wealth, and power, enforce social norms, and marginalize those viewed as unfit for society, and as such employs stigma processes that are easily, effectively, and indirectly accepted and enacted in society [ 18 ]. Based on this interpretation of stigma-power, the stigmatizer is not necessarily limited to a powerful individual or group, but also permeates the general public and the individual, therefore it can exist at the individual, interpersonal, and structural level. While stigma-power exists at each level, it is more easily identified at the structural level. This article looks at systemic and criminalization stigma as examples of structural stigma as the structures of agencies and laws that interact with substance use exemplify how stigma-power is at play. For example, systemic stigma is enacted and enforced by agencies, institutions, and influential individuals within groups of people and targets those who are stigmatized by attempting to manage risk and govern their interactions [ 19 ]. An important factor of systemic stigma is it protects the stigmatizer from repercussions of discrimination, because the stigmatization is embedded in norms, policies, or resources and the goals of stigmatization are achieved at the macro level Tsai et al. and Link and Phelan [ 9 , 18 ]. Additionally, criminalization is a form of systemic stigma that is closely related to substance use and is a common and effective way for governments to “control and exclude persons who are defined as threatening to an existing social order” [ 20 ]. It is often enacted through street policing and can result in reduced access to harm reduction services, rushed injection, increase in disease transmission, and increased risk of overdose [ 21 ]. Criminalization can be more common for people who use substances and who are experiencing poverty and/or are racialized or experiencing other intersecting identities [ 20 ]. It is an effective tool to “other” PWUD and maintain existing hierarchies in society and is considered a way to shift public attention from systemic inequities [ 20 ].

This paper seeks to broaden the existing conceptualizations of stigma in current literature to allow for consideration of how difference and power are created and maintained, as well as tangible ways to challenge existing norms, cultures, and structures that sustain SUS. As discussed by Parker and Aggleton [ 14 ], stigma and stigmatization function “at the point of intersection between culture, power, and difference”. Therefore, it is important to understand how people may be experiencing these different levels of stigma, as well as the interactions between them to better understand how they may be influencing successful implementation of drug checking services. This is achieved through the perspectives of the participants in this study.

Substance use stigma prevents people from engaging in harm reduction practices [ 8 , 9 , 22 ]. Further, Corrigan and Nieweglowski and Tsai et al. identify stigma as a main hindrance in adequately responding to the opioid crisis through harm reduction practices [ 9 , 22 ]. There are many ways of thinking of and conceptualizing both stigma and substance use stigma in the existing literature. The substance use stigma framework from which this article will draw includes some of the most common definitions of stigma in the existing literature.

Tsai et al. [ 9 ] identify 6 types of stigma: structural, public, enacted, courtesy, internalized, and anticipated. Additionally, Corrigan and Nieweglowski [ 22 ] identify three types of stigma: label avoidance, public stigma, and self-stigma. Earnshaw and Chaudoir [ 23 ] identify internalized, anticipated, and enacted stigma. Other scholars discuss structural stigma, which often includes discussions around laws and regulations [ 24 ]. There is a general theme of substance use stigma existing at three levels: an individual level where stigma exists within individuals, an interpersonal level where stigma exists within interactions between people, and a structural level where stigma exists at a policy level.

As drug checking is increasingly being implemented as a harm reduction response to overdose there is a need to examine how stigma may uniquely be enacted and responded to in these newer services. In its simplest form, drug checking is the process in which drugs are tested for components that are not expected in a supply and/or that could cause overdose or otherwise undesirable reactions [ 25 , 26 , 27 , 28 ]. Drug checking is a harm reduction response to help prevent PWUD from consuming substances they did not intend to purchase and to provide the opportunity to make informed decisions about drug use [ 8 , 29 ]. This approach has been adopted across European countries and in some cities in North America, which accept illicit drug use will continue despite prohibitions and opt to offer special services to drug users [ 25 , 30 ].

Dancesafe, an American drug checking organization, was founded in 1998 in response to the risks posed by adulterants (harmful additives) being found in ecstasy (Dancesafe.org, accessed on 31 January 2022). This response to party drug related overdoses was largely mirrored across Europe and America [ 31 ]. Dancesafe takes the stance that they neither condemn nor condone drug use, rather they provide non-judgmental support to PWUD. This shows that the drug checking movement began in response to young people who used party drugs, such as Ecstasy, in recreational setting likes raves and who were not being reached by existing prevention programs and supports for PWUD [ 25 ].

We have reached the sixth year of the publicly declared overdose crisis in British Columbia and there is no sign of improvements [ 32 ]. Bardwell and Kerr and Kerr and Tupper suggested drug checking may be an effective response to the opioid overdose epidemic [ 33 , 34 ]. While Canada may be considered progressive in its regulation of cannabis, Larnder and Burek [ 32 ] and Wallace et al. [ 8 ] state it is the failed drug policies that are eresponsible for thousands of overdose related deaths. The literature illustrates that drug policy is not likely to change as quickly and effectively as is necessary for lives to be saved, thus highlighting the need for drug checking as a means of harm reduction in the meantime. Existing research has not found that the presence of drug checking sites has resulted in an increase in PWUD, nor has it found that individuals who use drug checking services use more drugs than those who do not [ 25 ]. This article contributes to the existing literature by providing insight and recommendations to reduce stigma related to drug checking from community members who are living through the overdose crisis.

We aimed to specifically explore the role of SUS as it relates to community drug checking from the perspectives of people who use and/or sell drugs and others impacted by the illicit drug market. A secondary analysis of qualitative interviews was conducted to explore in depth how stigma was being experienced and could be operating as a barrier within drug checking services, and potential strategies that could address this. We conducted this research with a critical harm reduction and social justice approach that seeks to transcend neoliberal perspectives of harm reduction [ 7 , 35 , 36 , 37 ], and developed a multilevel analytic framework to guide this research that combines critical perspectives on stigma and how they can operate and intersect specific to a drug checking context [ 9 , 18 , 19 , 20 , 21 , 23 ]. We used this resulting Substance Use Stigma Framework to better understand the experiences of SUS within drug checking services and potential ways to navigate resulting tensions.

2. Materials and Methods

This qualitative study was part of a community-based research project in Victoria, BC, Canada that implements and operates community drug checking sites as a harm reduction approach to the illicit drug overdose crisis and the unregulated illicit drug market. Ethical approval was provided from the Human Research Ethics Board at the Island Health Authority (J2018–069). This research project was a collaborative inquiry with both university (B.W., T.V.R. and D.H.) and community researchers with local harm reduction organizations. The intention was to include individuals with academic training and skills and those with established trusted relationships with potential participants.

2.1. Sampling

The study sought the perspective of people who use and/or sell substances, and others impacted by the illicit drug market, such as family and friends who might benefit from drug checking services. An earlier study [ 8 ] primarily reached individuals who utilize inner-city resources, like harm reduction and health services. The objective of this study was to both include and expand beyond this demographic to reach individuals who are less likely to utilize inner-city resources, as well as people who make or distribute substances. Everyone who expressed interest was interviewed. Handbills, posters, and emails to local services were utilized to recruit participants because it allowed for third-party recruitment and increased potential to reach a wider audience. Because the objective was to reach beyond inner-city service users and those who already access harm reduction sites, recruitment posters and emails were sent to services and sites that were not explicitly focused on substance use nor inner-city health and homelessness such as neighbourhood houses, community health centres, food and employment programs, etc. Word-of-mouth also functioned as a significant recruitment strategy and no one who expressed interest was refused an interview. In the end, while most participants were not accessing existing harm reduction services, five participants had accessed drug checking. Participants were provided with a CDN$20 honorarium.

A total of twenty-six semi-structured interviews were conducted, eleven of which were conducted by the lead researcher, eight by interviewers with the drug user organization, and seven by the partnering harm reduction organization. Interviews typically lasted between 15 minutes to just over an hour, with an average time of 30 minutes. We also asked demographic questions as well as questions related to substance use and overdose, and use of harm reduction services. Most questions focused on how drug checking could best be implemented, for example; what would you hope for in a drug checking service, if you could design a perfect drug checking service how would it operate, how would a service fail to meet your expectations and what barriers do you face in accessing drug checking. Recorded interviews were transcribed verbatim by graduate research assistants and coded using NVivo 11 (led by T.V.R.).

2.2. Data Analysis

This secondary analysis focused on exploring SUS, particularly aiming to understand how it creates barriers to accessing drug checking services and potential strategies to address these. We reviewed existing literature considering how stigma is currently discussed and theorized across disciplines and within the substance use and drug checking context. As no consistent framework from which SUS is typically analyzed exists, we developed a Substance Use Stigma Framework based on existing literature which we utilized as an analytical tool.

For this SUS Framework, we drew heavily on Tsai et al.’s [ 9 ] typology of stigma related to substance use which highlights how stigma influences several facets of our lives, as well as other broader conceptualizations of stigma recognizing that stigma may operate at different levels and intersect across levels and with systems and services resulting in experiences of structural violence, and reinforcing power and oppression [ 14 , 15 , 18 ]. Our analytical framework considers SUS at three levels; individual, interpersonal, and structural. Within these levels we considered two types of SUS at each level. At the individual level, we looked at anticipated stigma and internalized stigma; at the interpersonal level, we looked at enacted stigma and episodic stigma; and at the structural level we looked at criminalization stigma and systemic stigma. While the framework presents each level of stigma as distinct levels, we recognize the complexity of SUS and the significant intersections of each level. For these reasons, the framework intentionally avoids a hierarchical approach as a strategy to acknowledge the creation and maintenance of SUS at each level, but also highlights that each level is not mutually exclusive and cannot exist without the others. A description of the framework and associated definitions and supporting references are given in Table 1 .

Analytical Framework.

	Level	Characteristics	Content
Substance Use Stigma	Individual Level	Internalized	According to Earnshaw and Chaudoir [ ] internalized stigma refers to the process of believing in the negative feelings imposed on those who use substances, it is the internalization of negative beliefs and feelings associated with substance use. Tsai et al. [ ] explain internalizing stigma can result in maladaptive behaviours, such as withdrawing from care or resources. This can lead to the belief that one’s status in society is less valuable than others [ ].
	Individual Level	Anticipated	The expectation that one will experience prejudice, discrimination, or judgement is considered anticipated stigma, as defined by Earnshaw and Chaudoir [ ]. It is common for an individual who anticipates stigmatization to adapt their behaviours out of fear of rejection by others and avoid services or means of care that could be beneficial to their well-being [ ]. For example, one might avoid a community drug checking service, which could lead to negative impacts for that individual, such as consuming unknown or fatal substances.
	Interpersonal Level	Episodic	Episodic stigma refers to isolated events where stigmatization occurs over time, rather than on a consistent basis [ ]. For example, if an individual experiences substance use stigma as they enter a safe consumption site or a community drug checking site at least once, but not constantly, they would be experiencing episodic stigma.
	Interpersonal Level	Enacted	Enacted stigma is demonstrated when others behave in a way that communicates judgement, prejudice, or disapproval (and stigmatization) of a stigmatized individual through actions such as social distancing or avoidance [ ]. This often takes place when the public perceives a stigmatized individual as dangerous or to have moral failings (often based on stereotypes) and discriminates against or avoids that individual for that reason [ ]. Enacted stigma also means the individual who has been stigmatized believes they have been treated in a way that is discriminatory and/or prejudiced [ ]. Enacted stigma becomes structural when the attitudes and beliefs are merged with cultural norms, laws, and policies.
	Structural Level	Systemic	Systemic stigma is enacted and enforced by agencies, institutions, and influential individuals within groups of people and targets those who are stigmatized by attempting to manage risk and govern their interactions [ ]. The act of using stigma as a resource to oppress has been identified as stigma power [ ]. Link and Phlan [ ] describe the relationship between systemic stigma and stigma power as a means to oppress or maintain the oppression of stigmatized groups and to reinforce stigmatized identities in society. An important factor of systemic stigma is it protects the stigmatizer from repercussions of discrimination, because the stigmatization is embedded in norms, policies, or resources and the goals of stigmatization are achieved at the macro level [ ] and Link and Phlan [ ].
	Structural Level	Criminalization	Criminalization is a form of stigma that is closely related to substance use and is a common and effective way for governments to “control and exclude persons who are defined as threatening to an existing social order” [ ]. Structural stigma is manifested in police responses to health needs such as problematic substance use and mental health [ ] Criminalization can be more common for people who use substances and who are experiencing poverty and/or are racialized or experiencing other intersecting identities [ ]. It is an effective tool to “other” PWUD and maintain existing hierarchies in society [ ]. One example of criminalization stigma is policing around community resources like safe consumption sites, needle exchanges, or community drug checking, often leading to mistrust in a service and decreased access [ ].

Data analysis began with SD and BW reading the transcribed interviews. A preliminary coding framework was then developed using the SUS Framework’s six types of stigma function as the parent nodes and associated child nodes within these to capture “stigma barriers” and “possible solutions”. Initial coding was conducted with SD and BW coding two transcripts separately to ascertain framework fit and coding reliability. The transcripts were then deductively coded to this framework in NVivo 11. Findings were then grouped to identify experiences of stigma at each level, how these can operate as barriers to use of drug checking, and potential strategies to address these.

There were 26 participants of whom 17 identified as female, 8 as male, and one participant choosing not to disclose ( Table 2 ). There were six who identified as Indigenous and 10 who identified as lesbian, gay, two-spirit, queer, bisexual or another sexual orientation. Participants predominantly resided in urban municipalities, in stable housing, and were wage earners and/or on disability benefits. The majority [ 22 ] reported they regularly consumed illicit drugs, with about half of these reporting daily use [ 11 ], about half (n = 10) reporting they usually used alone, and the majority [ 20 ] reporting that one of the common locations for consumption was their own home. Participants included family members of people who use drugs, notably parents, some who also identify as using drugs themselves. Few participants reported using harm reduction services.

Characteristics of the sample (N = 26).

Characteristic	Number (n)

Male	8
Female	17
Other (gender queer)	1

20–24	1
25–29	2
30–44	12
45–60	10
>60	1

No	20
Yes	6

Lesbian, gay or bisexual	8
Heterosexual or straight	16
Other	2

Daily	11
Weekly	7
Occasionally, not every week	4
Never	4

Never	2
Sometimes	7
Usually	11
Always	1
Don’t know	0
Does not apply	3

Victoria	13
Esquimalt	4
View Royal	1
Saanich	4
Sooke	2
Langford	2

Here, we present findings according to the Substance Use Stigma Framework’s three levels with six domains. For each level, we explore experiences of SUS, potential barriers it may cause, and potential responses or solutions to these barriers.

3.1. Individual Level: Anticipated and Internalized SUS

At the individual level, we heard that the experience of anticipated (the expectation one will experience prejudice, discrimination, or judgement because of substance use) and internalized (the process of believing in and internalizing negative feelings around substance use) SUS was pervasive.

Participants noted they felt too embarrassed or afraid to access drug checking due to a fear of being seen and expected others to feel similarly. For example, as this participant stated: “stigma, others seeing you” was a significant barrier to access and another that they were “always conscious of who could see them”. For participants with intersecting identities, in particular sex work, the anticipation of additional stigmas was a serious barrier to access and would lead to avoidance of accessing drug checking services as this quote highlights:

“You know, as a sex worker, having been so deeply stigmatized and still stigmatized for that, I’m hypersensitive to any additional stigmas, so, yeah, downtown doesn’t really work for me in that regard”.

Participants with higher paying jobs or more normative careers also identified anticipated stigma as a serious barrier because they did not want to be associated with substance use or with those appearing to be poor or experiencing homelessness. For example, one participant said: “Yeah, people don’t want to get seen by people like their customers, their clients, or co-workers” and further noted that “I think people who live in the suburbs and have real jobs are less likely to be OK with it. Or to be seen as being associated with it”. Another participant indicated that this fear can extend to personal relationships including family: “I’m sure there’s so many people out there using, that are working, or, and their family doesn’t know”.

Accessing downtown resources was described as intimidating and a barrier to drug checking if located and designed as an inner-city service because of this internalized or anticipated stigma. This included harm reduction services including safe injection sites or overdose prevention services as well as non-profits and drop-in centers. Further, we heard similar stigma barriers to accessing drug checking services in small towns or on reserve as there is little opportunity to remain anonymous. This quote illustrates the high levels of stigma people may face when accessing such services and attempts to separate from this:

“But even just walking in here, today, I was just like was layered with stigma and shame, and you know, all of that and I kind of had to say to the security guard, which was quite honest … to make him very aware that I’ve never been here before and I don’t belong here”.

People expressed feeling like they had to justify their substance use with a reason like trauma or self-deficiency, viewing themselves as “at risk” or “an addict” [P8] if they used a safe injection site, and feeling concerned about looking like those around them. In contrast, some participants expressed pride at not having internalized nor anticipated stigma as a person who uses drugs and accessing harm reduction services. One participant expressed how they have “been in that world for a long time” and are pretty open about substance use, but they recognized this was not the case for most other people who use drugs.

We also heard participants mention a hierarchy of substance use, where using opioids, for example, is viewed as “pretty bad”, but doing MDMA, “that’s fine”. This internalized SUS could prevent some people from accessing spaces that serve individuals who use those substances due to how it is perceived. Internalized stigma was also attributed to public health messaging around substance use, like “don’t use alone” which was described as not realistic and has just led people to a place where they do not want to tell people they are using alone. The suggestion we heard was to find ways to open up conversations around substance use as this participant discussed:

“So, I’ve had so many conversations with people where like if you’re using alone how are we doing that safely? Who are you calling? Like what does that look like? Like, this is what I do when I use alone. Like having those conversations with people has been super important because I think people feel really ashamed to be like “Oh, I use alone”.

Potential responses to address individual level SUS focused on service models and sites that address the fear of being seen accessing drug checking services, respectful staff, as well as promotional campaigns to get your drugs checked that take care to avoid stigmatizing messages. General public settings that are less stigmatizing were suggested such as pharmacies, medical clinics, community laboratories, grocery stores, gas stations, and recreation centres. Specifically, pharmacies were described as public sites but private enough to maintain a level of anonymity and suggested a private booth for the checking process. Another solution was services that do not require the physical presence of another person such as mail in or online services, drug checking kits in dispensers in public bathrooms, drop off services, and personal testing kits that can be disposed of after use. Others recommended more confidential service options such as outreach and mobile and mail-in services.

3.2. Interpersonal Level: Episodic and Enacted Substance Use Stigma

Fewer participants identified specific examples of personal experiences with enacted (when others behave in a way that communicates judgement, prejudice, or disapproval) and episodic (isolated events where stigmatization occurs over time) stigma. It was more common for participants to identify what enacted and episodic stigma would look like to them, including judgement, rudeness, blaming, and a lack of professionalism or how they have witnessed others being stigmatized. For example, enacted stigma was described as “somebody being rude or being judged for being a junky”. There were also instances of enacted stigma being reproduced in the interviews, for example, some language that was used by participants to describe different groups of people was both stigmatizing and stereotyping as well as judgement towards others based on substance type, i.e., the hierarchy of substance use mentioned previously.

In this study, some participants stated they had not experienced enacted or episodic stigma, especially when accessing community drug checking, where they noted they felt welcome and safe. While we heard that some people many may feel unsafe disclosing substance use to their family doctor, a nurse, or drop-in clinic doctor, participants identified drug checking sites as hopefully different. One participant indicated that “Anybody but The Man” should be running drug checking, such as:

“People that care; harm reduction workers, support workers, people that have compassion for the safety and viability of others but still have no opinion about drug use one way or another. People that accept, acceptance, people that accept drugs as part of their community.”

As noted, a potential response to enacted and episodic stigma included hiring staff who are/have used substances or who are committed to harm reduction for people who use substances, viewing them as equally deserving of respect and kindness. Overall, participants felt people with lived experience would be more accepting of people who use drugs and that substance use is part of their community. However, we heard that the definition of and portrayal of a “peer” varied. Throughout the interviews, two levels of people who use drugs were typically identified consistent with a hierarchy of substance use. One level is those who use street drugs, more commonly thought of as heroin/opioids or methamphetamines. The other level being so-called recreational substances, like MDMA or cocaine. Some participants thought it was important to tailor drug checking sites to both groups of people using substances, for example having “hipster” drug checking in a storefront for the recreational group and then continuing to have drug checking in harm reduction spaces in urban or downtown areas. Another recurring theme was to reduce interpersonal stigma by normalizing drug checking, either by promoting it by word of mouth, advertising it like designated driver programs, and putting drug checking sites in common spaces “where normal people go all the time” or in spaces where people already feel safe as supported to also reduce individual stigma.

3.3. Structural Level: Criminalization and Systemic Substance Use Stigma

Structural stigma included mentions of stigma systemically produced and maintained in societal institutions and includes criminalization stigma, usually identified as fear of police and authorities relating to the illegality of certain substances. We heard the multiple barriers to accessing drug checking as it relates to police presence and criminalization and how this embeds structural stigma.

Participants noted fear of being watched and targeted by police, and how drug checking is hard to access if avoiding or hiding from police. One participant stated: “police presence isn’t causing harm reduction. Police presence is causing death” and that drug checking needed to ensure police would not be on or outside of sites. We heard that substances being illegal makes drug checking also illegal, resulting in fear and avoidance of the service due to potential criminal repercussions. It was clear that any association with police would discourage accessing community drug checking and breakdown and prevent any opportunity for trust. In particular, those distributing drugs were noted as likely to avoid drug checking because of risk of criminalization and potential for police to gather information. A fear of an internet trail that could identify substance use or distribution (even when no personal information was provided, collected, or recorded) was also indicated. A number of participants identified a fear of getting caught jeopardizing their employment or custody of their children.

We also identified that systemic SUS was attributed to promotion in the media and general public of certain areas that stigmatized entire areas because of associated substance use. In particular this applied to areas with harm reduction sites, as well as systemic stigma attached to non-profits, which can discourage some people from accessing them. For example, this participant noted the systemic stigma present when harm reduction sites were initially implemented in BC:

“People were like “oh my god, they’re going to be sitting there just shooting up”. Well, what do you think they are doing anyways, right? I just, it was just so shocking. I lived on [the mainland] at that time, and it was just, the news and everything is like “this horrible place where people are just sitting around shooting up”, it’s like what do you think they’re doing in the [area of city]? They’re not having a tea party, you know.

Potential responses to help mitigate systemic stigma again included suggestions to normalize the existence of drug checking, potentially by simply creating more sites as a means to mainstream drug checking. Other options for normalizing drug checking included promoting it on billboards and other public campaigns around drug checking and positive drug culture so people can see themselves and legitimize the service. Professional storefronts were also suggested to legitimize drug checking. Further, we heard several participants call for decriminalization, the regulation of the drug supply, institutionalizing drug checking, developing more treatment centres, and shifting to treating addiction as a medical problem to address structural stigma. Participants also noted shifting systemic stigma through promotion of harm reduction in schools and an “invitation to drug checking through education”, shifting messaging to younger people from abstinence to safe use including drug checking as it is a more realistic approach.

4. Discussion

This study explores how substance use stigma may impact community drug checking from the perspective of potential service users. In our research on how to implement drug checking as a response to the overdose crisis we consistently heard how stigma was a potential barriers and how drug checking needed to address stigma to be effective. We drew from existing literature on substance use stigma to take a unique look at how stigma may impact the introduction of drug checking as a harm reduction response to overdose. By examining substance use stigma at the individual, interpersonal and structural levels and how community drug checking projects can navigate these barriers and mitigate their impacts we have applied existing stigma theories to inform drug checking as a public health intervention. Overall, while all sources of stigma presented barriers, participants described the risk of criminalization and the anticipation of being poorly treated appear to be the most significant barriers related to stigma and that deter service use.

Being criminalized is clearly stigmatizing and the presence of police erodes safety and trust for people who use drugs to access drug checking and other harm reduction services and sites services [ 8 , 21 , 38 ]. Furthermore, criminalization disproportionately impacts Indigenous, Black and other racialized groups, expectant birth-givers, transgender and gender diverse folks, sex workers, and others who face oppression in daily life [ 20 , 21 , 39 ].

Decriminalization is a structural intervention that has the greatest potential to reduce substance use stigma both by normalizing substance use, removing criminal repercussions, and removing the morality, the view that something is either right or wrong, from our perception of people accessing drug checking sites [ 40 , 41 ]. Drug checking and decriminalization are well-aligned and arguably instrumental to each other in the absence of widely available regulated drug supply [ 42 ].

A clear theme from this research was having access to drug checking in spaces that are not currently stigmatized was suggested to ease the anticipation of being stigmatized while accessing a drug checking site. Participants identified feelings of fear and embarrassment when accessing or considering accessing drug checking sites, especially where community drug checking is viewed as an inner-city service within a non-governmental organization serving a clientele assumed to use drugs. However, cultural safety for people who use drugs varies and accessibility for some may be inaccessibility for others [ 43 ]. Fear of association with these types of services may be rooted in structural stigma as well as a hierarchy of substances identified by some of the participants. For example, there was a clear distinction between substances typically viewed as “street drugs” versus “party drugs”. Others have identified this hierarchy of substance use, where drugs are considered more socially acceptable, including marijuana, alcohol, and ecstasy [ 44 , 45 ]. The implications of SUS in this form could result in shame for those using substances that are considered more harmful and the avoidance of drug checking services if the site does not seem safe or relevant for them. Enacted stigma is defined as engaging in behavioural manifestations, including discrimination and social distancing, based on views of social and cultural unacceptability [ 9 , 46 ]. It was made clear in the interviews that enacted stigma exists amongst people who use substances, with stigma towards others based on substance type, and is therefore not limited to service providers and people who do not use substances enacting SUS. It is possible the anticipation of stigma while accessing drug checking sites could be linked to this hierarchy of substance use as some identified the avoidance of accessing drug checking sites and non-governmental organizations as they did not feel they “belonged” in those spaces.

Rather than location drug checking within inner-city harm reduction sites, participants frequently described drug checking as needing to be openly public yet still anonymous. General public and commonly accessed locations were perceived as less stigmatizing than harm reduction sites that help counter fear of identification when accessing services and potentially normalize drug checking. At the same time, privacy is essential and ensuring privacy within these public settings is necessary. While this may help to create accessible and appropriate services for some people, these spaces may be inaccessible and unsafe for others including racialized folks, women, transgender, non-binary, and gender diverse folks and people living in poverty [ 43 ]. Further, some medical professionals and spaces have been found to have negative attitudes towards people who use substances and often lack adequate training and education around substance use and critical harm reduction approaches [ 47 ]. Therefore, it is critical to recognize the experiences of interpersonal stigma that can occur within these environments and consider strategies to create safer environments.

The employment of people with lived and living experience (PWLLE) as service providers was consistently identified as a strategy for facilitating trust and reducing the stigma that service users feel when services. PWLLE bring a unique perspective to harm reduction services and have a personal understanding of how to implement effective client-centred services, policies, and programs [ 38 , 48 ]. Employment of PWLLE is also an overarching strategy that is being recommended to help address structural determinants of inequities including stigma at the structural level [ 49 , 50 ].

Our prior work has indicated how critical employment of PWLLE is within harm reduction services to counter the poor treatment and stigma service users have experienced (8). However, we heard that the definition of who fit as a ‘peer’ varied as much as the respondents did. Participants were looking for peers that reflected their own social location and the substance types they use whether that be an opioid, stimulant or psychedelic. Including peers from a broad range of backgrounds and substance types can help reduce stigma associated with substance use and allow service users to be more comfortable and better identify services as appropriate to their needs [ 6 ]. Care needs to be taken that this does not inadvertently result in exclusion of those with the most structural disadvantage and further increase stigma.

Turan et al. [ 51 ] discusses the rise of the term “intersectional stigma” which builds on Kimberley Crenshaw’s work on intersectionality [ 52 ]. Tsai et al. [ 9 ] discuss how each existing type of SUS intersect with one another and serve to reinforce the harms of each type, at each level. Thinking about the intersection of SUS with other factors in peoples lives allows for a holistic approach to understanding the issues SUS can cause for those impacted by it. This intersection of each type of SUS and the diverse identities of those who are stigmatized creates a complex and nuanced circumstance that inevitably reproduces more extreme cases of marginalization and oppression. For example, the impact that SUS has on a middle class, middle aged white male is significantly different than that of the impact SUS may have on a Black woman experiencing poverty or an Indigenous non-binary person living in a rural area. The interaction of SUS with privilege is an important nuance to understand and a particular focus needs to be given in further research to the role SUS has in reproducing other structural barriers.

The normalization of drug checking was a recurring theme to addressing substance use stigma while the ongoing criminalization of drugs and people who use drugs hinders such efforts. Recommendations to normalize drug checking included health promotion campaigns similar to designated driver campaigns, implementing drug checking within common spaces where people already go or where people already feel safe, and promoting the positive benefits of drug checking more than the harms and risks of drug use. Unfortunately, public health promotion campaigns and even anti-stigma campaigns directed at substance use and people who use drugs too often reinforce SUS highlighting the critical importance of care with messaging to address stigma at multiple levels [ 53 , 54 ]. For example, we heard that while safer use messages such as “Don’t Use Alone” that aim to shift away from anti-drug messaging, can also convey blame and shame. It is important to note, however, that some evidence shows the effectiveness of negative campaign in reducing behaviours like tobacco use [ 55 ]. In this particular instance, the focus is on stigma-reduction related to illicit substance use and therefore policy change should focus on evidence relating to such data.

5. Strengths and Limitations of the Study

A strength of this study is that it seeks the perspectives of people who use substances to understand the impacts substance use stigma has on accessing community drug checking. This study was conducted by a research team that includes community partners from local harm reduction and drug user organizations in Victoria, BC, Canada. A comprehensive substance use stigma framework was developed that incorporates critical theoretical perspectives, appropriate to drug checking, to support analysis and understanding of the multiple and intersecting levels of stigma that can influence successful implementation. This research study was impacted by the COVID-19 pandemic, which resulted in the research team ending interviews earlier than initially intended. Overall, while we were successful in reaching a diverse group within Victoria, BC, who were not accessing harm reduction services, we were unsuccessful in recruiting men in the trades, who have been disproportionately affected by the overdose crisis, or youth. Further research needs to explore substance use stigma for people outside of urban centres, including people in rural or reserve communities, to determine how stigma may be operating within these contexts. Future research is also needed to understand the level of acceptability of community drug checking moving into new spaces, such as pharmacies, medical buildings, and more and what types of promotion and messaging would be most effective for addressing stigma at different levels.

6. Conclusions

Community drug checking is increasingly being viewed as one potential response to the illicit drug overdose crisis in which unpredictable and potent drugs are linked to unprecedented levels of overdose. However, potential service users identified numerous ways in which substance use stigma operates across levels to create barriers to accessing such services. The risk of criminalization and the anticipation of being poorly treated, both consequences of a wider systemic substance use stigma, were significant barriers that can deter use of services. Further, we identified a perceived hierarchy of substance use with greater stigma associated with certain types of substances, that resulted in stigma towards others and avoidance of sites and areas associated with such substance use. Structural interventions such as decriminalization are needed to address root causes of stigma at all levels. Strategies to mitigate these tensions within the current context of criminalization included employment of people with lived and living experience from a wide range of backgrounds; public yet private locations that preserve anonymity; and normalization of drug checking.

Acknowledgments

We thank; Heather Hobbs and Piotr Burek for their supporting roles in the project, the community researchers at Solid Outreach, and from University of Victoria’s School of Social Work. We thank Jacquie Green and Graduate Research Assistants Hannah Dalton, Marina Bochar and Emily Shaw.

Funding Statement

This work was supported by the Health Canada Substance Use and Addictions Program under grant SUAP: 1819-HQ-000042, the Vancouver Foundation under grant VF: UNR17-0265, and Michael Smith Foundation for Health Research (MSFHR)’s Pathway to Patient-Oriented Research Award: 18203.

Author Contributions

Conceptualization, S.D., B.W. and T.V.R.; methodology, S.D., B.W. and T.V.R.; formal analysis, S.D., B.W. and T.V.R.; writing—original draft preparation, S.D and B.W; writing—review and Editing, S.D., B.W., T.V.R. and D.H.; supervision, B.W.; project administration, B.W. and D.H.; funding acquisition, D.H. and B.W. All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement

The study was approved by the Human Research Ethics Board at the Island Health Authority (J2018–069).

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study. Written informed consent has been obtained from the participants to publish this paper.

Data Availability Statement

Conflicts of interest.

The authors declare no conflict of interest.

Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

IMAGES

Qualitative Methods for Social Health Research
6 Types of Qualitative Research Methods
(PDF) Evaluative Criteria for Qualitative Research in Health Care
Qualitative Research and its Uses in Health Care Industry
Qualitative Research Approach—Why Its Usage?
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The greatest strength of the qualitative research approach lies in the richness and depth of the healthcare exploration and description it makes. In health research, these methods are considered as the most humanistic and person-centered way of discovering and uncovering thoughts and actions of human beings. Table 1.
Qualitative Research
This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research.
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Qualitative Health Research. Qualitative Health Research (QHR) is a peer-reviewed monthly journal that provides an international, interdisciplinary forum to enhance health care and further the development and understanding of qualitative research in health-care settings. QHR is an … | View full journal description.
SSM
About the journal SSM - Qualitative Research in Health is a peer-reviewed, open access journal that publishes international and interdisciplinary qualitative research, methodological, and theoretical contributions related to medical care, illness, disease, health, and wellbeing from across the globe.
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This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research. Qualitative research designs are diverse and each design has a different focus that will inform the approach undertaken and the results that are generated. The aim is to move beyond the "what" of qualitative ...
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Qualitative research allows deeper understanding of the richness and complexity of social phenomena. Qualitative methods can provide evidence on health and illness and can be used in various ways: 3. To complement quantitative methods, or when quantitative methods are impractical (e.g. when the topic is sensitive, poses measurement problems or ...
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TABLE OF CONTENTS

Associations between sex work laws and sex workers’ health: A systematic review and meta-analysis of quantitative and qualitative studies

Methods and findings

Conclusions

Author summary

What did the researchers do and find?

What do these findings mean?

Introduction

Data extraction and quality assessment

Definitions

Inclusion criteria

Data synthesis

Quantitative synthesis

HIV and STI outcomes.

Condom use.

Access to services and mandatory testing.

Emotional ill health.

Drug and alcohol use.

Registration at a municipal health service.

Evaluation of sex work policies.

Qualitative synthesis

Core category 1: Disrupted workspaces and safety strategies.

Core category 2: Institutionalised violence, coercion, and extortion, and restricted access to justice.

Core category 3: Reproduction of multiple stigmas and inequalities.

Core category 4: Restricted access to health and social care and support.

Box 1. Quotes

Core category 2: Institutionalised violence, coercion, and extortion, and restricted access to justice

Core category 3: Reproduction of multiple stigmas and inequalities

Core category 4: Restricted access to health and social care and support

Limitations

Supporting information

S1 Fig. Sensitivity analysis of unadjusted and adjusted estimates of HIV/STI stratified by police exposure.

S2 Fig. Sensitivity analysis of unadjusted and adjusted estimates of sexual/physical violence stratified by police exposure.

S3 Fig. Sensitivity analysis of unadjusted and adjusted estimates of condomless sex stratified by police exposure.

S4 Fig. Sensitivity analysis of outcome misclassification.

S1 Table. Quality assessment of quantitative studies.

S2 Table. Data used in R for meta-analysis.

S1 Text. Systematic review protocol.

S2 Text. Summary of CERQual assessment.

S3 Text. Category themes and sub-themes.

S4 Text. All references reviewed as part of qualitative synthesis.

Experiences and impacts of psychological support following adverse neonatal experiences or perinatal loss: a qualitative analysis

Introduction

Methodology

Data collection

Recruitment

Reflexivity

Creating time and space for support

Tailoring the communications

A flexible and proactive approach

Being listened to without judgement

Independent from others

Not just about the baby

Shared experience

Barriers to service delivery

Making a difference

Tools for positive coping

Enhanced well-being

Improved relationships with others

Confidence in returning to work

Data availability

Acknowledgements

Author information

Contributions

Corresponding author