Stigma reduction interventions in people living with HIV to improve health-related quality of life

Series

HIV Outcomes Beyond Viral Suppression 3 Stigma reduction interventions in people living with HIV to improve health-related quality of life Galit Zeluf Andersson, Maria Reinius, Lars E Eriksson, Veronica Svedhem, Farhad Mazi Esfahani, Keshab Deuba, Deepa Rao, Goodluck Willey Lyatuu, Danielle Giovenco, Anna Mia Ekström

As the UNAIDS 90-90-90 targets for people living with HIV are increasingly being reached in many contexts, healthrelated quality of life, the so-called fourth 90, warrants special attention. HIV-related stigma and discrimination are major barriers for overall health-related quality of life despite impressive clinical and virological improvements in HIV care. There is a scarcity of well designed intervention studies that document stigma reduction in people living with HIV and few studies that specifically assess the effect of stigma on health-related quality of life. Further, few interventions target discrimination from providers outside of HIV-specific care or involve people living with HIV in both the design and implementation. Lastly, evidence on methods to reduce stigma in several underepresented key populations and geographical regions is insufficient and research on intersectional stigma (ie, the convergence of multiple stigmatised identities) needs further attention.

Introduction With effective antiretroviral therapy (ART) delivering high levels of sustained virological suppression, healthrelated quality of life (HRQoL) in people living with HIV warrants special attention. The UNAIDS 90-90-90 targets for epidemic control (ie, that by 2020, 90% of all people living with HIV will know their status, 90% of people diagnosed with HIV infection will receive sustained ART, and 90% of those receiving ART will be virally suppressed) are increasingly being reached in many contexts.1,2 How­ ever, this target does not account for many remaining concurrent challenges in people living and ageing with HIV who still have suboptimal HRQoL with regards to their mental, sexual, and physical wellbeing.2 The addition of a so-called fourth 90 that includes improved HRQoL for people living with HIV requires solutions that go beyond ART and viral suppression. Impressive clinical and virological progress over the past two decades has resulted in substantial advancements in both clinical treatment outcomes and HIV prevention options. There is convincing evidence that no risk of HIV transmission through sexual contact exists when people are virally suppressed on ART, a shift that has revolu­ tionised public health communication.3 Stigma, however, can negatively affect happiness, self-esteem, sexual and social relationships, and the sense of purpose in those living with HIV.4 Previous research has shown that HIV-related stigma and discrimination are strongly associated with selfassessed overall quality of life and mental wellbeing.5–13 Fear of stigma and discrimination can also inhibit healthseeking behaviour and is a major obstacle for timely diagnosis,14 prevention efforts,15,16 and linkage to care and support,17–19 not only for people with HIV, but also for people with mental health disorders and other concurrent conditions, many of which are associated with ageing

with HIV. HIV-related stigma is a major human rights challenge and addressing this and HIV-related discrim­ ination will be necessary to achieve the goal of ending AIDS as a public health threat by 2030.20

Stigma Goffman’s often cited definition of stigma describes it as an attribute that is deeply discrediting, that reduces the bearer from a whole person to a tainted, discounted one.21 More recently, it has been argued that stigma is constructed Key messages • HIV-related stigma and discrimination are major obstacles for reaching good health-related quality of life (HRQoL). • Despite considerable efforts to combat HIV-related stigma and discrimination, the effects experienced by people living with HIV are insufficiently evaluated and documented. • There is a scarcity of well designed intervention studies that document stigma reduction. • Few interventions have specifically assessed the effect of HIV stigma on HRQoL. • Few interventions have involved people living with HIV in either the design or implementation, although the evidence shows the importance of this for relevant and sustainable impact. • Evidence is scarce on methods to reduce HIV stigma in several key populations and in many regions. • Further research is required on how to address intersectional stigma for populations that are disproportionally affected by HIV, and on how to prevent discrimination from health-care providers outside of HIV-specific care, which undermines health seeking for mental health disorders and other comorbidities. Addressing stigma is a growing concern and must be overcome.

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Lancet HIV 2019 Published Online November 24, 2019 https://doi.org/10.1016/ S2352-3018(19)30343-1 See Online/Comment https://doi.org/10.1016/ S2352-3018(19)30349-2 This is the third in a Series of three papers on HIV outcomes beyond viral suppression Infectious Disease Department, Karolinska University Hospital, Solna, Sweden (Prof A M Ekström PhD, L E Eriksson PhD, V Svedhem PhD); Department of Public Health Sciences (G Z Andersson PhD, Prof A M Ekström), Division of Innovative Care Research, Department of Learning, Informatics, Management and Ethics (M Reinius PhD, L E Eriksson), Department of Infectious Diseases (L E Eriksson, V Svedhem, Prof A M Ekström), and Department of Medicine Huddinge (V Svedhem), Karolinska Institutet, Solna, Sweden; School of Health Sciences, City, University of London, London, UK (L E Eriksson); HIV-Sweden, Stockholm, Sweden (F M Esfahani MSc); Save the Children International, Kathmandu, Nepal (K Deuba PhD); Department of Global Health and Department of Psychiatry and Behavioural Sciences, University of Washington, Seattle, WA, USA (Prof D Rao PhD); Management and Development for Health, Dar es Salaam, Tanzania (G W Lyatuu MPH); Department of Epidemiology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA (D Giovenco ScM); and Desmond Tutu HIV Center, Cape Town, South Africa (D Giovenco ScM) Correspondence to: Prof Anna Mia Ekström, Department of Public Health Sciences, Karolinska Institutet, Solna 171 77, Sweden [email protected]

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Panel 1: Description of the processes of stigma23 Stigma drivers Individual-level factors that originate from a lack of knowledge of HIV, prejudices, and use of stereotypes and cognitive processes that help us to make sense of the world Stigma facilitators Societal-level factors that maintain stigma, including laws and regulations, cultural and gender norms, and economic status Intersectional stigma The convergence of multiple stigmatised identities due to intersecting prejudices related to affiliations to marginalised groups (eg, migrants, ethnic, or sexual minorities) or particular behaviours (eg, substance use and sex work) Stigma manifestations The immediate results affecting how stigma is exhibited or experienced by individuals and groups and include anticipated, enacted, and internalised stigma

from a variety of psychological and societal factors and, according to Link and Phelan, “… exists when elements of labelling, stereotyping, separating, status loss and discrimination co-occur in a power situation that allows the process to unfold”.22 HIV-related stigma is closely related to societal power structures, legal frameworks, and intersecting prejudices experienced by many of the subpopulations that are disproportionally affected by HIV.23 It could serve a human need to categorise things and to hold social struc­ tures in place, and maintain boundaries and inequalities between groups of people and between those who have power and those who do not (see panel 1 for an expanded description of the process of stigma).24,25 People living with HIV often encounter so-called intersectional stigmas, defined as the convergence of multiple stigmatised identities due to intersecting preju­ dices that are related to affiliations to marginalised groups (eg, ethnic identity, sexual orientation, or gender) or moral­ ising societal views attributed to particular characters or behaviours (eg, substance use, sex work, poverty, or incarceration).26 Turan and colleagues26 recommend researchers avoid an oversimplified categorisation and analyse multiple identities in greater depth to increase the evidence for interventions that target intersectional stigmas.26 Earnshaw and colleagues27 designed the HIV Stigma Frame­work, validated with empirical data, which clearly outlines the mechanisms and consequences of stigma for HIV prevention and intervention. Birbeck and colleagues28 build on this framework, recognising the drivers, manifestations, and outcomes of health-related stigma and discrimination that cut across disease contexts, enabling a more unified approach, beyond individual conditions, that could guide future stigma reduction interventions. Similarly, Stangl and 2

colleagues29 proposed a cross-cutting theoretical Health Stigma and Discrimination Framework that could be applied across a range of stigmatising health conditions, including HIV, while also accounting for intersectional stigma.29 At an individual level, stigmatisation in the form of prejudices and negative attitudes towards people living with HIV can materialise into discriminatory actions, such as job or housing refusal or social exclusion at the workplace, school, or other social environments.22 Struc­ tural discrimination due to HIV stigma includes legal and social structures that inhibit or limit people living with HIV from equal opportunities to obtain employment, work or residence permits, or to get married, or to travel. Further, this form of discrimination might lead people living with HIV to be denied parental rights, such as assisted fertilisation or adoption.22,30 In December, 2017, UNAIDS formed a global partnership for action aiming to eliminate all forms of HIV stigma and discrimination, recognising the importance of addressing the inter­ sectional stigmas of key populations, such as sex workers, people who inject drugs, men who have sex with men, transgender people, people in prisons and other closed settings, and, in some social contexts, women, young people, migrants, refugees, and internally displaced people.20

Stigma reduction interventions and HRQoL Working towards improved HRQoL, the fourth 90, requires validated tools to monitor long-term progress and targeted interventions to reduce the stigma experienced in people living with HIV. A better understanding of which stigma reducing interventions to invest in beyond the health-care setting is also needed because HIV-related stigma and discrimination could occur in every area of social life and at multiple levels, including inside families, communities, schools and workplaces, and within the justice system.20 In 2014, UNAIDS published a resource kit for highimpact stigma reduction, stating that “every national response should be based on an evidence-informed understanding of HIV-related stigma”.31 Based on the People Living with HIV Stigma Index32 and stigma reports from more than 50 countries,33 UNAIDS proposed that efforts at all levels (ie, legal and policy, law enforcement, institutional, community, and at the individual level)31 should address HIV stigma. Consistent with intersectional stigma frameworks and acknowledging the prejudices and stigmas experienced by many key populations living with HIV, the UK-based National AIDS Trust concluded that the complex nature of HIV-related stigma makes it “unlikely that any one-dimensional intervention will have a meaningful impact”.25 In line with UNAIDS, the National AIDS Trust recom­mended that governments design evidencebased interventions to reduce stigma at all levels through a comprehensive combination approach in which all

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strategies are constructed with the following questions in mind: where (ie, which setting or context?), what (ie, what needs to change?), and how (ie, how should this be done?).25 There have been several helpful reviews of stigma reduction interventions to guide future work in this area. The availability of effective interventions to reduce HIV stigma was reviewed in 2011, but only two out of 19 selected publications included people living with HIV, and most were deemed to be of poor validity due to shortcomings in the study designs.34 Published in 2013, a more complete review23 of existing interventions on the stigmatisation process found that most studies only addressed one socioecological level or one single domain of stigma, and largely focused on stigma drivers (at the individual level) and facilitators (at the societal level), and few studies included people living with HIV.23 More recently, in 2017, Mak and colleagues35 reviewed a broad array of HIV stigma interventions aimed at reducing negative attitudes towards people living with HIV and found small but significant reductions by interventions targeting stigma at multiple levels: community members, health-care workers, and students. Another review, by Pantelic and colleagues,36 on reduction of HIV self-stigma in low-income and middleincome countries, observed that structural-level inter­ ventions, such as ART provision, economic strengthening, and social empowerment, as well as cognitive behavioural therapy at the individual level, lead to the most consistent self-stigma reductions. However, interventions aimed at improving health awareness, stigma coping, and behavioural change appeared ineffective. Lastly, in 2019, Rao and colleagues37 reviewed multilevel stigma reducing interventions for numerous stigmatising conditions (including HIV, mental health, and leprosy) across a broad variety of populations and socioecological levels, but did not analyse the effect on stigma experienced by people living with HIV themselves. Although previous reviews have rarely focused on stigma experienced by people with HIV or their reported HRQoL, previous studies show that most interventions done so far have used information-based approaches.23 Other studies38,39 have argued that educational inter­ ventions alone rarely change attitudes, but mainly teach people to suppress their negative attitudes, and that health awareness campaigns have little effect on selfstigma, consistent with findings from other studies.36 To address this problem, individual-level interventions have incorporated personal contact as a mechanism to affect attitude change. Personal contact humanises a person with a stigmatised condition and subsequently reduces individual-level manifestations of stigma (ie, the immediate results of stigma on people living with HIV and their overall HRQoL).23,37,40 Views on which stigma reduction strategies to implement might differ between people living with HIV, who often prioritise wider-context

stigma reduction interventions,40 and researchers and providers, who rank behavioural interventions higher.40 Further, people living with HIV can provide unique insights into their vulnerabilities and needs with respect to HIV-related stigma and HRQoL. Thus, for sustainable interventions to effectively reduce manifestations of stigma in people living with HIV, more interventions need to involve people living with HIV in the design, implementation, and evaluation of intervention prog­rammes.28,41 Involving people living with HIV in stigma reduction interventions might also help to reach the fourth 90 target.42

Current review We provide a narrative-focused review of stigma reduc­ tion interventions that have implications for HRQoL for people living with HIV across all income settings. We focus on individual-level interventions that target manifestations of stigma (ie, the immediate effects of stigma on people living with HIV). We examined interventions that targeted enacted, anticipated, and internalised stigma in people living with HIV. The overarching goal was to increase our knowledge about which, and to what extent, individual-level stigma reduction interventions have been effective. Furthermore, we set out to assess whether intervention programmes are designed in collaboration with people living with HIV, identify gaps in targeting of particular key populations, settings, or regions, and provide recommendations to increase the coverage of effective interventions and fill any knowledge gaps for stigma reduction interventions with implication for HRQoL. A detailed description of the review process can be found in the appendix (p 2). Our search yielded 27 records43–69 representing various study designs in low-income, middle-income, and high-income settings (table).

See Online for appendix

Interventions to reduce experienced HIV stigma by study design Quasiexperimental approaches

In quasiexperimental studies, educational radio prog­ rammes significantly reduced the stigma in groups of people living with HIV in Tamil Nadu, India.59 In Ethiopia a large-scale intervention over 7 years that included non-health-care professionals who offered integrated home-based care and support for families and orphans, stigma reduction, and income-generating activ­ities at the community level found positive changes in community attitudes towards people living with HIV and improved quality of life in people living with HIV.62

Qualitative or mixed-methods approaches Intervention studies with qualitative designs indicated favourable intervention effects. Initial workshops for people living with HIV focused on understanding HIV stigma, personal strengths, and disclosure management. These workshops were often followed by workshops for

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4

South Africa RCT

India

Thailand

China

Masquillier et al, 201556

Nyamathi et al, 201361

Rongkavilit et al, 201565

Simoni et al, 201567

RCT

RCT

RCT

USA

DeMarco and Chan, 201350

RCT

RCT

Bogart et al, 201748

USA

RCT

Bhatta and Nepal Liabsuetrakul, 201747

South Africa RCT

Bhana et al, 201446

RCT

USA

Study design

Barroso et al, 201444

Country

To watch the mp4 video “Maybe Someday” on an iPod; participants were asked to watch the video at least once a week for 4 weeks, then as much or as little as desired for 5–12 weeks

Intervention

Intervention group was assigned a peer adherence supporter or treatment buddy

20 (ten intervention group, ten control group)

74 (37 intervention group, 37 control group)

Theory-informed parental HIV disclosure support intervention

Four session, motivational interviewing-based Healthy Choices intervention at 1, 2, 6, and 12 weeks after baseline; motivational interviewing counselling targeted two of three possible risk behaviours: sexual risks, alcohol use, and antiretroviral adherence

Parents living with HIV with children who were unaware of their parents’ HIV status

MSM youth (ranging from 16 to 25 years old) living with HIV

Adult women living with HIV (ranging from 18 to 45 years old)

Adults living with HIV

Summary of results

23-item scale questionnaire

HIV/AIDS illness stigma (perceived stigma, disclosure, and self-esteem)

Disclosure distress, disclosure self-efficacy, and disclosure behaviour continuum

Shortened (12-item) version of Berger’s HIV stigma scale

NA

Yes Peer adherence supporters who had been on ART for at least 12 months Mixed results, treatment buddy decreased stigma, whereas adherence supporter increased felt stigma

Significant reduction in stigma

No reduction in stigma

NA

NA

(Table continues on next page)

Nurses

Interventionist trained in motivational interviewing

Expert physicians, NA nurses, spiritual leaders, and a project director

Yes

Peer leaders

Yes One black peer counsellor with in-depth knowledge of HIV and black communities

Two national level trainers

Yes

NA

Research assistant

Lay counsellors and one psychologist

Did intervention design include people living with HIV?*

Intervention implementer

Not effective

10-item scale, Significant which is one of reduction in four stigma scales stigma developed by Ekstrand et al, 201270

Shortened version of Berger’s HIV stigma scale

HIV stigma scale

No reduction in stigma

Significant reduction in stigma

Non-significant trend in the intervention group of less stigma

Significant IHSS, a 28-item multidimensional reduction in stigma measure of internalised HIV stigma

Stigma measurement tool

Stigma not Black or African American, adults defined living with HIV with self-reported adherence problems

Adults living with HIV

Children and adolescents aged 10–14 years

Adult women living with HIV

Study population

Peer-led, 4-week-small-group, structured writing using film Black women ≥40 years clips from Women’s Voices Women’s Lives as a writing prompt

Three individual 60-min counselling sessions at weeks 1, 2, and 4, and a group session on HIV education during the first month, followed by two booster sessions (on weeks 12 and 20)

Participatory learning activities, such as buzz sessions, brainstorming, and lecture and discussion techniques; six sessions held weekly at an ART centre with a group of eight to ten participants

68 (34 intervention Six 45 min sessions on HIV and AIDS, ART, parenting, coping with stigma, nutrition and life skills classes; group, 34 control intervention group received monthly supplies of 1 kg of group) urad dal (lentils) and 1 kg of toor dal (a form of pea), as well as bus tokens to the hospital or clinic

630 (first follow-up=397; second follow-up=294)

110 (56 intervention group, 54 control group)

215 (107 intervention group, 108 control group)

132 (66 intervention group, 66 control group)

65 (33 intervention Cartoon-based storyline (comics) of a 12-year-old boy living with HIV and counselling for participants group, 32 control group)

100 (51 intervention group, 49 control group)

Number of participants

Series

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Study design

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USA

Harper et al, 201453

Pretest and post-test

50 (28 men, 22 women)

48

USA

Farber et al, 201351

Pretest and post-test

78 (18 people with HIV [ten from urban areas and eight from rural areas]); 60 people living close to someone with HIV (23 from urban areas, 37 from rural areas)

Chidrawi et al, South Africa Pretest and 201649 post-test

USA

Batey et al, 201645

3733 (pre=1942, post=1791)

36 (health-care workers=17, people with HIV=19)

Pretest and post-test

Canada

Adam et al, 201143

228 (119 intervention group, 109 control group)

Number of participants

Pretest and post-test

RCT

Van Tam et al, Vietnam 201269

(Continued from previous page)

Country

Two individual sessions, followed by nine gender-specificweekly group sessions and a final individual session

Mental health service programme integrated with community-based HIV primary care (ie, psychotherapy, psychopharmacological services, and case management support)

2-day workshop with people with HIV: personal understanding of HIV stigma, identification of personal strengths and teaching responsible disclosure management; first day: understanding HIV stigma and relationship between people with HIV and people living close to someone with HIV; second day: learning and practising the planning of an HIV stigma reduction project; followed by a series of 6-day workshop for each group of people living close to someone with HIV occurring 2 weeks apart; 1-month HIV stigma reduction work with similarly designated groups within the community

Adaptation of a 2-day workshop and a 1-day project evaluation workshop after a 1-month interval; intervention included three key elements: sharing of information, increasing contact between health workers and people with HIV, and using empowerment strategies to improve coping with HIV-related stigma

Development of a province-wide advertising strategy; creation of a range of promotional materials across the province; and development of an interactive website

Peer support intervention

Intervention

Newly HIV diagnosed youth (ranging from 16 to 24 years old)

Adults living with HIV

Adults living with HIV; people living close to someone with HIV

Health workers who were staff in a health-care setting with patient contact; adults living with HIV

Gay and bisexual men in Ontario

Adults living with HIV

Study population

Berger’s HIV stigma scale

HIV stigma scale with subscales: distancing, blaming, and discrimination

Significant reduction in stigma

No reduction in stigma

Yes

No reduction in stigma

HASI-P; AIDS-related stigma measure for community HIV stigma

Yes

NA

(Table continues on next page)

Interventionist with a mental health background and a peer facilitator living with HIV

Health-care providers

Research assistants, one person with HIV and one facilitator (who didn’t have HIV)

One social worker Yes and one person living with HIV

No reduction in stigma

Comprehensive questionnaire; HIV stigma scale

NA

Blog facilitators

No reduction in stigma

Yes

Did intervention design include people living with HIV?*

Stigma-related survey assessing stigma-related attitudes, beliefs, and behaviours

Intervention implementer

Trained peer supporters

Summary of results

No reduction in stigma

Internal AIDS-related stigma scale

Stigma measurement tool

Series

5

6

Study design

USA

Haiti

Rao et al, 201264

Smith Fawzi et al, 201268

Li et al, 201754 Canada

Uganda

USA

Neema et al, 201260

Moitra et al, 201758

Mixed method

Pretest and post-test

Pretest and post-test

Pretest and post-test

Pretest and post-test

(Continued from previous page)

Country

Study population

Psychosocial support group intervention that relies on social cognitive theory with a focus on enhancing coping skills and increasing social support

Workshop for discussion and exercise to acquire new coping skills

African, Caribbean, Asian, and Latino Canadian communities

HIV-affected youth and their HIV-positive caregivers

African American women living with HIV

People living with Creativity initiative intervention; provide activities in the HIV clinic while patients wait to be seen by health-care professionals; large board games, music, and communal art; training in how to develop entrepreneurial skills to gain productive employment, and provision of social and spiritual support in the clinic

Adults living with Acceptance-based behaviour therapy intervention: first HIV session included psychoeducation on engagement, informed disclosure, adaptation to feelings of hopelessness or prevention of feelings of hopelessness, cognitive defusion (ie, gaining distance from negative thoughts), and experimental acceptance; value-driven living. Second session was designed as a booster and also included revisions of the treatment manual, adaptation to hopelessness or prevention of hopelessness, and use of different metaphors with the purpose of fostering resilience to hopelessness. Emphasis was put on engagement in treatment and creating an index card with two or three important values for the patient.

Intervention

105 (42 community CHAMP study using SJCB and ACT versus SJBC only; group leaders, 63 people discussion and mindfulness exercise and experimental group exercises done across four half day sessions with HIV)

210

24

Quantitative (first survey=400, second survey=400); qualitative=75

9

Number of participants

Significant reduction in stigma in caregivers and children’s wellbeing

Effective

Quantitative findings show mixed results, both increased and decreased at different provider interactions

No reduction in stigma

Summary of results

A-RSS and IA-RSS Significant reduction in for people with stigma HIV; nine-item and six-item standardised scales used to measure HIV stigma for community leaders (A-RSS+)

HIV stigma scale

Stigma scale for chronic illness and HIV stigma scale

Team developed semi-structure questionnaire; no validation provided

HIV stigma scale

Stigma measurement tool

NA

Not mentioned

(Table continues on next page)

NA

Yes

NA

NA

Did intervention design include people living with HIV?*

Trained professional social workers

An African American woman living with HIV and a social worker

Creative leader and consultation with key stakeholders

Clinical psychologist

Intervention implementer

Series

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Study design

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South Africa Qualitative

Kenya

French et al, 201452

Lowther et al, 201855

2-day workshops with only people living with HIV in both urban and rural settings focusing on the knowledge of HIV, identifying strength, training, disclosure and disclosure management; followed by a 3-day workshop for each group in both rural and urban settings, including presentations and group discussions

Community and home-based care programme service; based on the elements of social cognitive theory

Radio educational and empowerment programme

30 (20 intervention Nurse-led palliative care intervention; people with HIV in the intervention group received at least seven group, 10 control appointments (≥45 m) with a nurse group)

78 (18 people with HIV, 60 people living close to someone with HIV)

Quasiexperimental 2168 (1084 intervention group, 1084 control group)

Ethiopia

Okello et al, 201362

Qualitative

Intervention

62 people with HIV; 5-month long intervention programme, including 27 3-h workshops on understanding HIV stigma for both 570 community people living with HIV and community member groups; members five workshops on coping with HIV stigma for those interested in continuing; and, weekly door-to-door understanding HIV stigma teaching with a pamphlet; after the workshops, both the community and people living with HIV received six support group sessions

Quasiexperimental 257 (120 unexposed, 77 recently exposed, 60 exposed a month ago)

South Africa Mixed method

Number of participants

Nambiar et al, India 201159

Prinsloo et al, 201763

(Continued from previous page)

Country

Adults living with HIV with chronic pain

Adults living with HIV and people living close to them

Adults living with HIV

Adults living with HIV

Adults living with HIV and people from their community

Study population

Qualitative interviews about HIV associated stigma

Experiences of people living with HIV (and their significant others) as expressed in an open interview postintervention

Stigma not well defined

Steward and Ekstrand HIV stigma scale developed in India

HASI-P; received stigma: includes four subscales including verbal abuse, health-care neglect, social isolation, fear of contagion; internal stigma: negative self-perception

Stigma measurement tool

Increased resistance to HIV-associated stigma in both the intervention and control groups

NA

(Table continues on next page)

Nurses

Yes The intervention was successful and promising for future use in reducing HIV stigma

Facilitators composed of people with HIV and HIV-negative people

Yes

Yes

Did intervention design include people living with HIV?*

NA

Trained people with HIV

Community mobilisers

Intervention implementer

Quality of life in Volunteer-based domains of social community organisations inclusion, and the environment for people with HIV improved

Significant reduction in stigma

No reduction in stigma

Summary of results

Series

7

8

partners, children, and friends,52 peer support groups,57 or small support teams of neighbours, relatives, and friends (so-called micro-clinics) trained together to provide psychosocial and adherence support in countries such as Uganda57 and Kenya.66 A patient-centred holistic care intervention in adults living with HIV in Kenya found that simple mechanisms for support, compassion, and improved communication in routine care increased self-esteem, stigma resilience, and increased confidence to disclose HIV status.55

Trial and pretest and post-test approaches

Table: Description, characteristics, and main findings of the intervention studies included in this Series paper

ACT=Acceptance and Commitment Therapy and Training. A-RSS=AIDS related Stigma Scale. ART=antiretroviral therapy. HASI-P=HIV/AIDS Stigma Instrument. IA-RSS=Internalised AIDS related Stigma Scale. IHSS=Internalized HIV Related Stigma Scale. MSM=men who have sex with men. NA=not available. RCT=randomised controlled trial. SJCB=Social Justice Capacity Building. *Yes indicates that the intervention included people with HIV in the design or intervention phase, or both.

A micro-clinic is a Yes therapy management collective comprised of a group of neighbours, relatives, and friends Participants reported reduction in HIV stigma HIV stigma (stigma not well defined) Adults living with Micro-clinic intervention therapy management collective comprised of a network of five to 15 neighbours, relatives, HIV and friends; parallel health seminar and radio broadcasting; sessions include the basics of HIV/AIDS biology, ART, and related issues 161 (82 micro-clinic participants, 40 community health workers, and 39 staff of local programme) Qualitative Kenya Salmen et al, 201566

Qualitative Uganda Mburu et al, 201357

(Continued from previous page)

Country

Study design

Number of participants

65 (40 people with HIV, ten members of the household, and 15 health-care workers)

Intervention

Study population

Adults living with Network Project: empowering people with HIV by HIV engaging them as partners in the delivery of HIV services through three approaches: first, mapping and supporting (which involved organising 750 people living with HIV into a network of 120 larger subnational clusters); second, training the groups on comprehensive HIV prevention and care, record keeping, income generation, advocacy, and financial and general project management; and, lastly, implementing community-based HIV prevention, care, and treatment referral activities with the groups as partners who were functional in 40 districts, with a total membership of more than 40 000 people living with HIV

Stigma measurement tool

HIV-stigma (stigma not well defined)

Summary of results

Intervention implementer

Groups of people Interviews revealed that HIV with HIV stigma declined in the communities as a result of the intervention

Yes

Did intervention design include people living with HIV?*

Series

In studies with a quantitative design, perceived stigma was often assessed through self-administered questionnaires to participants living with HIV. Many studies showed statistically significant reductions in perceived stigma across all participants,44,47,51,54,61,64,67,68 with few finding varying effect depending on gender53 or provider category.56 A group-based behavioural intervention for youth in the USA on HIV awareness, coping skills, and contact with other youth sustainably reduced stigma in young men across all four dimensions of stigma manifestations (ie, personalised stigma, disclosure concerns, negative self-image, and concern with public attitudes about people living with HIV), whereas young women only experienced a temporary decline in personalised stigma and increased stigma across the other three types of stigma manifes­tations.53 Moreover, a community support initiative in South Africa that used treatment buddies resulted in decreased levels of stigma experienced by people living with HIV, whereas stigma increased when a health-care professional provided the support.56 Mixed results in clients’ experiences of enacted stigma at the health-care facility level were found following a creativity intervention aimed at generating a more caring attitude between staff, peers, and people living with HIV in Uganda.60 Lastly, the potential stigma-reducing effect of a patientcentred mental health programme for underserved adults living with HIV in the USA based on active decision making and individualised care plans, including a range of therapeutic services following a comprehensive biopsycho­social assessment at enrolment was evaluated. Although the evidence was rated as being of poor quality in our assessment, self-reported stigma appeared to decrease across the three dimensions in the HIV Stigma Scale: distancing, blaming and discrimination.51 By contrast, several studies using either randomised controlled trials or pretest and post-test designs showed no statistically significant reductions in stigma in people living with HIV,43,45,48,58,65 although some authors said they observed important stigma reductions in practice49,63 or trends indicating stigma reduction.46 For example, stigma appeared to decline following a peer-led video and writing intervention in African American women living with HIV.50 On a similar note, in Vietnam, no reductions in stigma

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Panel 2: Recommendations for future policy and research • Health-related quality-of-life measures need to be consistently included in HIV-related stigma interventions • Meaningful inclusion of people living with HIV in the design, development, implementation, and interpretation of stigma-reducing interventions is required if interventions are to be effective • More evidence is needed to address stigma in older people living and ageing with HIV, including those with comorbidities who are seeking services additional to their HIV-specific care • Future evaluations of the efficacy of new policies and stigma interventions in neglected subpopulations and key populations, including those facing intersecting stigma, are needed • The absence of contextual evidence required to design effective stigma-reducing interventions for people living with HIV in north Africa or west Africa, South America, Australia and the Pacific region, and Europe should be addressed through additional research • Interventions must be contextualised to the setting and subpopulation, and tailored to account for variation in verbal ability and willingness to participate in group sessions, which might vary between different subgroups and individuals living with HIV • Innovation in civil society involvement that addresses HIV stigma beyond traditional peer-support programmes and health-care settings is required; this action must be adequately resourced to enable effective and rigorous evaluation that can then enable sharing of best practice • Future research must take a combination approach that looks at HIV-related stigma through a multi-level (eg, individual and structural levels) and intersectional lens, ideally using existing validated tools and frameworks to enable cross-study comparisons

were found following peer-led support visits, but improved quality of life 12 months post-intervention was seen in patients who were severely immunosuppressed.69

Types of HIV-related stigma interventions, target groups, and settings Most of the papers discussed in this Series paper described interventions that targeted specific groups living with HIV, such as women,44,50,61,64 children, and families,46,53,57,67,68 ethnic subgroups,48,50,64 or key populations (eg, adolescents46,53 and men who have sex with men),43,65 whereas only two studies included people living with HIV with other comorbidities (eg, chronic pain55 or mental health issues).51 Some interventions were multilevel, including com­ munity members, social networks, family members and caregivers, and health-care workers.45,52,54,57,66,68 Most inter­ ventions were delivered by therapists or health-care professionals and included individual or group sessions

with people living with HIV, with some being peer led or community based (table). Approximately half of the included studies reported some involvement of people living with HIV. In these studies, people living with HIV were described as being involved in various stages of the intervention design,46 the intervention implementation (ie, as peer educators),45,49,52,53,56,63,66 or both.48,50,57,59,64,69 About half of the included studies broadly mentioned the relationship between stigma and quality of life in the introduction or discussion section, but few studies assessed the effect of the intervention on both stigma and HRQoL.47,62,69 These studies found that quality of life improved after the stigma-reducing interventions.

Knowledge gaps Most of the stigma-reducing and discriminationreducing interventions that have been evaluated were quantitative in study design, with only two mixedmethods studies and four qualitative studies. All interventions relied to some extent on participants’ ability and willingness to express themselves verbally, most often in groups. Verbal communication might not be the most suitable model for individuals who do not have the capacity or who do not feel comfortable speaking about themselves and their HIV infection in front of others. Teti and colleagues71 provided an interesting alternative to group sessions by encouraging individual artistic expressions to reduce personalised stigma. None of the intervention studies included in this Series paper was done in north or west Africa, South America, Australia, Europe, or the Pacific region, despite these regions being home to over a third of all people living with HIV globally.72 Additionally, settings where the three 90s are largely fulfilled, and with a rapidly growing population who are ageing with HIV (such as Australia and western Europe), were not represented in the literature at all, marking a serious knowledge gap on progress towards HRQoL and the fourth 90. There is an absence of intervention studies on HIV stigma and discrimination in non-HIV-specific health-care settings, such as clinical settings that treat common comorbidities, including care for older people living with HIV, a group with a greater need for healthcare services that go beyond ART. Furthermore, to date, no published stigma-reducing interventions have been evaluated in several important key populations that are at an elevated risk of HIV infection (eg, migrants, people who are transgender, and prisoners) and very few studies focused on people who inject drugs, sex workers, men who have sex with men, adolescents, or young people. Racial or ethnic subgroups were rarely considered outside of North America. Lastly, more interventions should document any involvement of people living with HIV in the study design or in other stages of the interventions because such interventions have often been found to be most effective. Although the effects of stigma-reducing

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Search strategy and selection criteria

For more on HIV Outcomes see www.hivoutcomes.eu

This Series paper began as a systematic review to identify studies that fulfilled the following criteria: first, a study population that includes people living with HIV, second, an intervention aimed to reduce HIV stigma or HIV discrimination and, third, an assessment of the effect of the intervention for reducing HIV stigma affecting people living with HIV. We did a systematic search of five major databases: MEDLINE through PubMed, Cumulative Index to Nursing and Allied Health Literature, PsychINFO, Web of Science, and the Cochrane Library. A broad search strategy was used, including combinations of keywords or MeSH terms for the three key terms “HIV”, “stigma”, and “intervention”. We restricted our search to studies published between Jan 1, 2010, and Dec 31, 2018, studies published in English, and studies with an abstract and full text available. In addition to databases, we searched for relevant articles in the reference lists of identified systematic reviews. A detailed search strategy and risk of bias assessment can be found in the appendix (pp 1–4).

interventions could have implications on quality of life, very few studies explicitly assessed the effect of the intervention on both stigma and HRQoL.47,62,69 None of the included inter­ventions specifically targeted intersectional stigma or assessed the effect of the stigma-reducing interventions on intersectional stigma commonly experienced by many marginalised populations that are disproportionally affected by HIV infection.

Conclusions Our Series paper identifies a need for well designed intervention studies that document stigma reduction. Further research is warranted on intersectional stigma and ways to reduce HIV stigma and discrimination beyond the HIV-specific health-care setting for people ageing with HIV and people with comorbidities and mental illness, a priority in the strive towards improved HRQoL in people living with HIV (panel 2). The application of cross-cutting theoretical frameworks for research and interventions to reduce health-related stigma across multiple stigmatised health conditions should also be further explored in the context of HIV.28,29 Reducing stigma and improving HRQoL are imperative for reaching the fourth 90 and sustainable development goals 3 and 10 (good health and wellbeing for all and reduced inequalities through decreased vulnerability, marginalisation, and discrimination),73 as well as achieving more equitable health at the global level. Contributors GZA, AME, LEE, and VS conceptualised this Series paper. MR led the review process and identified the first search results. DR placed the Series paper in the context of previous stigma reviews. All authors reviewed identified records. Quality assessment was done by AME, LEE, GZA, and MR. This Series paper was drafted by GZA, AME, LEE, and ME, and revised by GZA, AME, DG, and DR. All authors read

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