PAPER: A ‘scoping review’ of qualitative literature about engagement with HIV care in Indonesia

A ‘scoping review’ of qualitative literature about engagement with HIV care in Indonesia

Reference:

Lazuardi, E., Bell, S., & Newman, C. E. (2018). A ‘scoping review’of qualitative literature about engagement with HIV care in Indonesia. Sexual health

Important quotation:

1.     A literature review of 17 publication in scopus, web science, Medline and Proquest

2.     The publication period included all years between 1990 and 2016.

3.     Exclusion factor: Literature was excluded if the research was not conducted in Indonesia; not published in English; reported solely on quantitative data; was not peer-reviewed (articles and chapters in edited books were included; media reports, conference abstracts, conference reports, thesis/dissertation and unpublished grey literature were excluded); and did not contain primary data relating to the HIV care cascade (diagnosis, linkage to care, treatment uptake, adherence).

4.     Factors influencing successful engagement include a lack of HIV-related knowledge among clients, fear of stigma or lack of privacy/confidentiality at services, limited accessibility and affordability, and poor linkages between services.

5.     Factors affecting the broader response include a failure to adapt programs to specific socio-cultural settings, political issues in the distribution of donor funding, distrust and poor communication between service users and providers, the need for cultural privacy in particular community settings, and systemic experiences of gendered stigmatisation.

6.     This study will contribute in-depth understanding of the social enactment and localisation of global HIV strategies from client, service provider and policymaker perspectives in the era of treatment as prevention in Indonesia, and will inform future policy development and service delivery in this setting.

Abstract.

Background: The Indonesian response to HIV has been informed largely by quantitative evidence. This review examines what is known about the Indonesian HIV care cascade from published qualitative research.

Methods: A ‘scoping review’ method was used to synthesise and interpret the findings of 17 eligible peer-reviewed publications.

Results: Qualitative findings are reported in relation to two themes. Factors influencing successful engagement include a lack of HIV-related knowledge among clients, fear of stigma or lack of privacy/confidentiality at services, limited accessibility and affordability, and poor linkages between services. Factors affecting the broader response include a failure to adapt programs to specific socio-cultural settings, political issues in the distribution of donor funding, distrust and poor communication between service users and providers, the need for cultural privacy in particular community settings, and systemic experiences of gendered stigmatisation.

Conclusions: Enhancing understanding of the Indonesian context would benefit from future qualitative research on HIV care in urban settings, describing the experiences of the most at-risk populations, and examining the role of clinics and providers in delivering HIV care in an increasingly decentralised health system.

Additional keywords: cascade of care, Continuum of HIV care, HIV treatment cascade, HIV diagnosis, HIV treatment, HIV response.

Received 5 September 2017, accepted 1 January 2018, published online 16 March 2018

Introduction

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The HIV cascade of care enables the identification and longitudinal measurement of the proportion of individuals engaged at different stages of care. In this model, HIV care is envisaged as a progressive continuum, and the clinical marker of increasing suppressed viral load at a population level is used as evidence of a successful HIV response. The prominent use of the cascade model has been criticised due to the associated ‘biomedical turn’ or ‘remedicalisation’ of global HIV responses.4–6 The assessment of success and  failure of services and patients in stark biomedical terms and epidemiological measures results in less attention to the social dimensions of engagement with care, living with HIV, and taking and adhering to treatment over long periods of people’s lives.6,7

The dominance of quantitative research methods in Indonesia illustrates the common misconception that qualitative research generates less trustworthy evidence for guiding the design and implementation of national health programs.8

8 Munro J, Butt L. Compelling evidence: research methods, HIV/AIDS, and politics in Papua, Indonesia. Asia Pac J Anthropol 2012; 13(4): 334–51. doi:10.1080/14442213.2012.694467

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Scoping of Review

A ‘scoping review’ is a systematic, transparent and rigorous method that has been used to synthesise and analyse literature, and identify knowledge and research gaps on a wide range of health areas, including sexual health,16,17 HIV18–20 and health policy.21 A scoping review typically consists of the following stages: identify a clear research question; identify relevant studies; study selection; synthesise data; and report results.15 It generally does not seek to assess the quality of evidence.15

Our research question was, ‘what does qualitative research contribute to what is known about the HIV care cascade in Indonesia?’. The following databases were searched to identify relevant papers: Scopus, Medline, ProQuest and Web of Science. The following search terms were used: (‘HIV’ OR ‘HIV infection’) AND (‘qualitative’ OR ‘qualitative research’ OR ‘ethnography’) AND (‘Indonesia’). The publication period included all years between 1990 and 2016. Literature was excluded if the research was not conducted in Indonesia; not published in English; reported solely on quantitative data; was not peer-reviewed (articles and chapters in edited books were included; media reports, conference abstracts, conference reports, thesis/dissertation and unpublished grey literature were excluded); and did not contain primary data relating to the HIV care cascade (diagnosis, linkage to care, treatment uptake, adherence). A search of electronic databases was conducted on 22 July 2016. Further searches were conducted using reference lists of relevant papers, the UNSW Sydney library and Google Scholar between July and December 2016. An additional search of a journal called Indonesia was performed using the same search terms used to search electronic databases. A total of 63 unique references were identified. After screening for the above characteristics, 17 publications were selected for inclusion in the final analysis. This process is shown in Figure 1.

The analysis process consisted of two stages. First, standard information about each publication – authors, publication year and type, research method, recruitment and sampling method, sample size, study population, location and stage of HIV care cascade – was charted in an Excel spreadsheet (Microsoft Corporation, Redmond, WA, USA). Second, a thematic analysis approach22 was used to synthesise findings from each publication. This paper reports two themes identified: factors affecting successful engagement across the HIV care cascade; and factors influencing the Indonesian HIV policy response.

Results

Our search results comprised 13 peer-reviewed articles and four book chapters, published between 2004 and 2016. The final 17 publications drew on data from 11 research projects:

one anthropological study examining experiences of stigma among people with HIV in Papua;23–26

23  Butt L. Local biologies and HIV/AIDS in Highlands Papua, Indonesia. Cult Med Psychiatry 2013; 37(1): 179–94. doi:10.1007/s11013-012- 9299-2 


24  Butt L. Can you keep a secret? Pretences of confidentiality in HIV/ AIDS counseling and treatment in Eastern Indonesia. Medical anthropology: cross-cultural studies in health and illness 2011; 30(3): 319–38. 


25  Butt L. Sexual tensions: HIV-positive women in Papua. In Bennett LR, Davies SG, editors. Sex and sexualities in contemporary Indonesia: sexual politics, health, diversity and representations. London: Routledge; 2015. pp. 109–28. 


26  Butt L. ‘Living in HIV-land’: mobility and seropositivity among Highlands Papuan Men. In Slama M, Munro J, editors. From ‘Stone-Age’ to ‘Real-Time’: exploring Papuan temporalities, mobilities, and religiosities. Canberra: ANU Press; 2015. pp. 221–42. 


one multi-sited anthropological study documenting the early implementation of Prevention from Mother to Child Transmission (PMTCT) in West Java and Jakarta;27–29

27  Hardon AP, Oosterhoff P, Imelda JD, Anh NT, Hidayana I. Preventing mother-to-child transmission of HIV in Vietnam and Indonesia: diverging care dynamics. Soc Sci Med 2009; 69(6): 838–45. doi:10.1016/j.socscimed.2009.05.043 


28  Hidayana I, Tenni B. Negotiating risk: Indonesian couples navigating marital relationships, reproduction and HIV. In Bennett LR, Davies SG, editors. Sex and sexualities in contemporary Indonesia: sexual politics, health, diversity and representations. London: Routledge; 2015. pp. 91–108. 


29  Imelda JD. Disease interpretations and response among HIV-positive mothers. Antropologi Indonesia 2014; 35(1): 4–16. 


one qualitative study exploring the experiences of HIV testing among people who inject drugs in Bali;30,31

30  Ford K, Wirawan DN, Sumantera GM, Sawitri AAS, Stahre M. Voluntary HIV testing, disclosure, and stigma among injection drug users in Bali, Indonesia. AIDS Educ Prev 2004; 16(6): 487–98. doi:10.1521/aeap.16.6.487.53789 


31  Sawitri AAS, Sumantera GM, Wirawan DN, Ford K, Lehman E. HIV testing experience of drug users in Bali, Indonesia. AIDS Care 2006; 18(6): 577–88. doi:10.1080/09540120500275015 


one mixed-methods study on HIV-related discrimination in Jakarta and Bali;32

32  Merati T, Supriyadi , Yuliana F. The disjunction between policy and practice: HIV discrimination in health care and employment in Indonesia. AIDS care 2005; 17(S2): 175–9. 


 one qualitative study in Jakarta examining the coping strategies of women with HIV after loss of their husband due to HIV-related illness;33

33  Damar AP, du Plessis G. Coping versus grieving in a “death- accepting” society: AIDS-bereaved women living with HIV in Indonesia. J Asian Afr Stud 2010; 45(4): 424–31. doi:10.1177/ 0021909610373904 


one mixed-methods study about HIV- related stigma among prisoners with HIV;34 

34  Culbert GJ, Earnshaw VA, Wulanyani NMS, Wegman MP, Waluyo A, Altice FL. Correlates and experiences of HIV stigma in prisoners living with HIV in Indonesia: a mixed-method analysis. J Assoc Nurses AIDS Care 2015; 26(6): 743–57. doi:10.1016/j.jana.2015. 07.006 


one qualitative study documenting tuberculosis patients’ experiences with HIV testing in Yogyakarta;35

35  Mahendradhata Y, Ahmad RA, Lefèvre P, Boelaert M, Van der Stuyft P. Barriers for introducing HIV testing among tuberculosis patients in Jogjakarta, Indonesia: a qualitative study. BMC Public Health 2008. 8: doi:10.1186/1471-2458-8-385 


 one anthropological study about stigma and disclosure in South Sulawesi;36

36 Boellstorff T. Nuri’s testimony: HIV/AIDS in Indonesia and bare knowledge. American Ethnologist 2009; 36(2): 351–63. doi:10.1111/ j.1548-1425.2009.01139.x  

one anthropological study documenting women’s experiences with PMTCT services in West Papua;37

37 Munro J, McIntyre L. (Not) getting political: indigenous women and preventing mother-to-child transmission of HIV in West Papua. Cult Health Sex 2016; 18(2): 157–72.

another anthropological study discussing the visibility of AIDS and associated stigma in Aceh;38 and

38 Samuels A. Seeing AIDS in Aceh: sexual moralities and the politics of (In)visibility in post. Indonesia 2016; 101103–20. doi:10.1353/ ind.2016.0002

one qualitative study assessing the need of home-based care among people with HIV in West Java.39

39 Ibrahim K, Haroen H, Pinxten L. Home-based care: a need assessment of people living with HIV infection in Bandung, Indonesia. J Assoc Nurses AIDS Care 2011; 22(3): 229–37. doi:10.1016/j.jana.2010. 10.002

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Factors influencing client engagement with services across the HIV care cascade

Diagnosis

Barriers to HIV care engagement at this stage of the care cascade included poor knowledge of HIV transmission, testing and treatment among clients;30,33,35 poor knowledge about HIV transmission among service providers;27,35 poor relationships between clients and service providers due to a lack of privacy and confidentiality during counselling;24,27,31 clients’ fears associated with receiving a positive HIV test result;30,35,36 and clients’ fears of social stigma in the services associated with HIV infection.30,33,35 In contrast, positive experiences with HIV testing were frequently linked to the role of well-trained community-based outreach workers from non-governmental organisations.27,36

Linkage to care

Factors decreasing the likelihood of further engagement with HIV care services included perceived or experienced breaches of confidentiality by health workers, as well as other negative health service experiences.

For example, one study in West Java documented longer waiting times due to health service staff shortages, and reported that confusion about the sharing of information between referral hospitals and community health centres meant that community health centres often could not identify which patients required HIV care.39 However, clients’ values also influenced linkage from HIV testing to other HIV care services. For example, three publications focusing on PMTCT programs in West Java,27,29 Jakarta27,28 and West Papua37 illustrated that new mothers’ negative views about HIV inhibited their participation in follow-up care and support after HIV testing.

Gender scripts differentially affected linkage to care. In Jakarta, a woman’s HIV status did not influence her willingness to engage with services, as her infection was typically viewed as an outcome of her husbands’ sexual practises.29 In Papua, however, health worker assumptions about Papuan women as ‘hyper’ sexual affected their willingness to access HIV treatment and care.25 Furthermore, women participating in studies conducted in Papua and West Papua were observed to be more secretive about their status and avoided medication, health clinic visits and HIV-related home visits in case other family and community members thought they were less able to fulfil their domestic roles.23,26,37 Transgender women often

faced another challenge in being linked to care because they were not able to be reissued identity documentation that reflects the gender they identify with. In addition, they were often no longer included in the family record, which is an important documentation for national insurance. For the hospitals, having no proof of identity meant there was no warranty for the hospitals to collect insurance money, as shown by the study in Aceh.38

Treatment uptake and adherence

In Indonesia, ART has been provided for free since 2004 and is produced by a state-owned enterprise.40,41 However, the reviewed papers revealed disparities in treatment access due to affordability and accessibility barriers

Factors influencing the Indonesian HIV policy response

Global initiatives and local contexts

HIV treatment strategies implemented in Papua have been criticised for replicating strategies from the rest of Indonesia, with insufficient attention to the many distinctive social and cultural features of Papuan and West Papuan societies.23,26,37

Manuals used for health worker HIV training were often adopted from international organisations, but made little reference to the diverse social and cultural contexts within Indonesia.24

Politics of funding

Until 2015 in Indonesia, 58% of HIV funding was received from external donors,1 which influenced the delivery of HIV programs and people’s engagement with HIV care.24,28,37

Power relations between service users and providers

Power imbalances that affect communication and interactions between clients and providers of health services are reported to influence people’s engagement with HIV care.23–25,31,35,37

Findings typically reported that health service providers were in a stronger position of power than clients, based on their health knowledge and socioeconomic status, leading to one- sided communication.23,24,26,31

In Papua and West Papua, inequalities between the less powerful indigenous Papuan clients and the more powerful Indonesian migrant health  workers made clients reluctant to ask questions about specific procedures related to testing and postnatal services.23,24,26,37

 However, in a study of VCT for tuberculosis patients in Yogyakarta, this relationship was reversed, whereby nurses felt intimidated when providing services to highly educated or very wealthy patients.35 In such circumstances of power imbalance, interactions between clients and service providers can be characterised by tension and distrust.

 pp.288x

Stigma, disclosure and secrecy

Two publications documented experiences of stigma – arising from cultural and religious positions on drug use as ‘immoral’ – among HIV-positive people and prisoners who inject drugs.30,34

In one of these studies, some respondents felt that health workers paid them little or no attention due to perceptions that they were ‘filthy’.3

Social values and practices that link stigma, disclosure and the need for privacy in particular cultural settings were reported to reduce HIV care engagement among indigenous Papuans.23–2

non-disclosure of HIV status is a strategic choice for social survival23,37

in Aceh, efforts by the state to increase the visibility of AIDS is often at odds with patients’ and support groups’ preference to remain invisible.38

Future research

Our review identifies clear avenues for future research to enhance the qualitative evidence base relating to engagement with HIV care in Indonesia. First, qualitative studies have tended to focus on non-urban parts of Papua, and urban parts of Jakarta and Bali, largely excluding other regions with equally high numbers of reported HIV cases, such as West Java, East Java, Central Java, North Sumatera and South Sulawesi. There is a need for more qualitative research in a range of Indonesian settings, including clients’ engagement with HIV care in urban contexts, where health service infrastructure is arguably better, but populations accessing services are larger and more ethnically diverse.

Second, government HIV strategies identify specific populations that have greater need to engage in HIV care, including men who have sex with men, female sex workers, waria (or transgender people), people who inject drugs and men with significant mobility.64 Our review shows that qualitative evidence about these populations is largely missing. In-depth qualitative research focussing more systematically on the HIV care engagement of people falling into these categories – but that is sensitive to the diverse experiences within and between these categories, and the social, cultural and religious contexts of their everyday lives – is required to support the improvement of services that are more attuned to people’s specific and diverse needs.

Third, few studies offer a deep examination of the role of clinics and health service providers in delivering HIV care. The increasing influence of decentralised health service provision will impact heavily on HIV service delivery in Indonesia. An understanding of clinic and service provider practices in different settings, gained from in-depth qualitative and ethnographic research, would enhance understanding about how national strategies are translated into practices at clinical settings, and how to ensure equitable access to high-quality services found at different stages of the HIV care cascade.

Conclusion

Our review emphasises the important role that qualitative research can play in generating in-depth understandings of engagement with HIV care. To date, either due to scarcity of qualitative research, perceptions that quantitative methods generate more credible sources of evidence, or challenges experienced by Indonesian researchers trying to publish their research for national and international audiences,8 qualitative evidence has largely been excluded from decision-making processes leading to the generation of appropriate Indonesian responses to HIV. In an era where HIV service provision is increasingly biomedicalised, and effectiveness is reduced to a monitoring of proportions of populations accessing different stages of the HIV care cascade, the need for qualitative research that uncovers the social dimensions of HIV care is becoming even greater. Qualitative and ethnographic research examining the practices of enhancing people’s engagement with HIV care is underway in an urban setting in Indonesia. This study will contribute in-depth understanding of the social enactment and localisation of global HIV strategies from client, service provider and policymaker perspectives in the era of treatment as prevention in Indonesia, and will inform future policy development and service delivery in this setting.