Paper: Understanding women’s uptake and adherence in Option B+ for prevention of mother-to-child HIV transmission in Papua, Indonesia: A qualitative study

Lumbantoruan, C., Kermode, M., Giyai, A., Ang, A., & Kelaher, M. (2018). Understanding women's uptake and adherence in Option B+ for prevention of mother-to-child HIV transmission in Papua, Indonesia: A qualitative study. PloS one, 13(6), e0198329.

Understanding women’s uptake and adherence in Option B+ for prevention of mother-to-child HIV transmission in Papua, Indonesia: A qualitative study

Reference

Lumbantoruan, C., Kermode, M., Giyai, A., Ang, A., & Kelaher, M. (2018). Understanding women's uptake and adherence in Option B+ for prevention of mother-to-child HIV transmission in Papua, Indonesia: A qualitative study. PloS one, 13(6), e0198329.

Christina Lumbantoruan1,2*, Michelle Kermode2, Aloisius Giyai3, Agnes Ang3, Margaret Kelaher1

1 Centre for Health Policy, University of Melbourne, Melbourne, Victoria, Australia, 2 Nossal Institute for Global Health, University of Melbourne, Melbourne, Victoria, Australia, 3 Provincial Health Office, Papua Provincial Health Office, Jayapura, Papua, Indonesia

MY CONCLUSION:

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Abstract

Background

Despite a more proactive approach to reducing new HIV infections in infants through lifelong treatment (Option B+ policy) for infected pregnant women, prevention of mother-to-child transmission of HIV (PMTCT) has not been fully effective in Papua, Indonesia. Mother-to- child transmission (MTCT) is the second greatest risk factor for HIV infection in the commu- nity, and an elimination target of <1% MTCT has not yet been achieved. The purpose of this study was to improve understanding of the implementation of Option B+ for PMTCT in Papua through investigation of facilitators and barriers to women’s uptake and adherence to antiretroviral therapy (ART) in the program. This information is vital for improving program outcomes and success of program scale up in similar settings in Papua.

Methods

In-depth interviews were conducted with 20 women and 20 PMTCT health workers at two main referral hospitals for PMTCT in Papua. Development of interview guides was informed by the socio-ecological framework. Qualitative data were managed with NVivo11 software and themes were analysed using template analysis. Factors influencing women’s uptake and adherence in Option B+ for PMTCT were identified through final analysis of key themes.

Results

Factors that motivated PMTCT uptake and adherence were good quality post-test HIV counselling, belief in the efficacy of antiretroviral (ARV) attained through personal or peer experiences, and a partner who did not prevent women from seeking PMTCT care. Key bar- riers for PMTCT participation included doubts about ARV efficacy, particularly for asymptomatic women, unsupportive partners who actively prevented women from seeking treatment, and women’s concerns about community stigma and discrimination.

Conclusions

Results suggest that PMTCT program success is determined by facilitators and barriers from across the spectrum of the socio-ecological model. While roll out of Option B+ as cur- rent national policy for pregnant women in Papua has improved detection and enrolment of HIV-positive women, health facilities need to address various existing and potential issues to ensure long-term adherence of women beyond the current PMTCT program, including during pregnancy, childbirth and breastfeeding.

IMPORTANT QUOTATION

In 2012, the World Health Organization (WHO) recommended Option B+ as a novel approach to eliminate mother-to-child transmission (MTCT) of HIV [1]

This approach requires routine HIV testing for all pregnant women and lifelong antiretroviral therapy (ART) for positive cases irrespective of HIV clinical status or CD4 count [2].

Based on WHO criteria, elimination of mother-to-child transmission (EMTCT) of HIV is achieved when there is less than 2% MTCT in non-breastfeeding populations or less than 5% in breastfeeding popula- tions, and if per 100,000 live births there are no more than 50 new pediatric infections [3].

1. World Health Organisation. Programmatic update: Use of antiretroviral drugs for treating pregnant women and preventing HIV infection in infants. 2012. Available from: http://www.who.int/hiv/pub/mtct/ programmatic_update2012/en/ 


2. World Health Organization. Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection: Recommendations for a public health approach. Geneva: World Health Orga- nization. 2013. 


3. World Health Organisation. Global guidance on criteria and processes for validation: Elimination of mother-to-child transmission of HIV and syphilis. 2nd edition. WHO. 2014. Available from: http://apps. who.int/iris/bitstream/handle/10665/259517/9789241513272-eng.pdf;jsessionid= 0EB32F7E22EC7CA9EF12029AE8170794?sequence=1 


Prior to Option B+, PMTCT performance in Indonesia was suboptimal with 86 new HIV infections in 1,145 (7.5%) live births among HIV-positive women who received the interven- tion [9]. During this period, PMTCT implementation was limited because of stigma and dis- crimination, long distances to health facilities, and long waiting times [10–12].

4. Kementerian Kesehatan Republik Indonesia. Rencana aksi nasional pencegahan penularan HIV dari ibu ke anak (PPIA) Indonesia 2013–2017. 2013. Available from: http://www.kebijakanaidsindonesia. net/jdownloads/Publikasi%20Publication/rencana_aksi_nasional_pencegahan_penularan_hiv_dari_ ibu_ke_anak_ppia_-_2013_2017.pdf 


5. Hardon AP, Oosterhoff P, Imelda JD, Anh NT, Hidayana I. Preventing mother-to-child transmission of HIV in Vietnam and Indonesia: Diverging care dynamics. Social Science & Medicine. 2009; 69(6): 838– 845. 


6. Oktavia M, Alban A, Zwanikken PAC. A qualitative study on HIV positive women experience in PMTCT program in Indonesia. Retrovirology. 2012; 9. Available from: https://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3360250/pdf/1742-4690-9-S1-P119.pdf 


7. Trisnawati LM, Thabrany H. The role of health system to support PMTCT program implementation in Jayawijaya regency. Indonesian Health Policy and Administration. 2015; 1(1): 8. Available from: http:// journal.fkm.ui.ac.id/ihpa/article/view/1729/575 


Data Analysis

The research team followed eight steps for conducting template analysis:

Step 1. Development of a priori themes based on literature related to the PMTCT program in Indonesia and other low and middle income countries, as shown in Fig 1.

Step 2. Data familiarisation by reading interview transcripts.

Step 3. Preliminary data coding by highlighting parts of transcripts relevant to a priori themes and new information relevant to research questions.

Step 4. Refinement of a priori themes to integrate new emerging themes.
Step 5. Organisation of themes into groups and establishment of hierarchical and lateral rela-

tionships between groups.

Step 6. Development of an initial coding template after coding five interviews that contained the greatest variation in responses.

Step 7. Application of the initial coding template, and revision after coding of another five interviews.

Step 8. Finalisation of the coding template and its application on the full data set.

Result

Participant characteristic

Data from 40 interviews, 20 HIV-positive women (10 women who were non-adherent, 10 women who were 100% adherent) and 20 health workers (health workers providing PMTCT service at both hospitals for at least one year), were analysed. 

Stigma and discrimination at health facility: Discrimination was not observed during field observations at both health facilities. There was no excessive use of precautions, including masks and gloves, in executing routine tasks or when meeting HIV+ women. Women partici- pants also claimed they were not treated differently (20/20) after HIV diagnosis. No participant reported discontinuing treatment due to discrimination at the health facilities. [pp 10] 

Interpersonal-level factors. HIV status disclosure and partner support: The majority of women in this study (16/20) had disclosed their HIV status to their partners and requested they get tested for HIV. Sero-discordant and HIV positive partners were reported to be more supportive than partners who refused to get tested. The latter could be mentally or physically abusive, and prevented women from adhering to treatment. The presence of domestic violence (3/10) before and/or after HIV status disclosure became a main reason for PMTCT non-adherence reported by women. [9] 

Institutional-level factors. Health workers explained the increasing number of patients they managed at CST clinics because HIV+ pregnant women no longer stopped ART after childbirth/breastfeeding as occurred pre- Option B+. They explained major infrastructure and human resources changes were less likely to occur in the short-term, so the PMTCT program was adjusted to meet available resources. Consequently, there was a reduction in quality of care, such as long wait times and lack of privacy, but women and health workers rarely identified these as barriers to PMTCT uptake and adherence. Frequently mentioned facilitators of program adherence were respect for confidentiality and stigma-free care from health workers. [9]

Factors motivating uptake and continuation in the program were a constellation of individual, interpersonal, institutional, and policy factors. Factors associated with increased uptake and adherence included good quality post-test HIV counselling, belief in the efficacy of ARVs to prevent transmission and improve health, confidentiality of HIV status, absence of stigma and discrimination at health facilities, positive women-health worker relationships, and free HIV services [25–32]. 

The women in our study did not necessarily require a partner who actively supported their treatment in order to remain in the program, unlike findings in other studies [23, 25, 37, 38]. A majority of women continued their treatment due to personal belief in ARV efficacy even without active encouragement from their partner. However, consistent with findings of other studies, partner support is important to retain women who are financially dependent on the partner [25, 26, 37, 39, 40].

Women-health worker relationships: The relationship between health workers and women seemed to be satisfactory as all women (20/20) described health workers as either friendly or kind, while health workers felt ‘kasihan’, or sympathy, for women and their chil- dren. A minority of women (2/20) mentioned health workers becoming angry with them when they missed their doses, but they believed it was ‘a sign of caring’, rather than dislike. One woman, however, preferred health workers explaining things without being angry. [11] 

Stigma and discrimination in the community: Perceived stigma and consequent discrimination in the community was seen by women as an important barrier to continued participation in the PMTCT program. Hence, a large proportion of women (16/20) sought treatment at a health facility outside of their neighborhood to avoid detection of HIV diagnosis by family members or friends. For this group, this meant travelling between 45 and 60 minutes using public transportation (n = 7) or continuing PMTCT treat- ment at referral hospitals instead of returning to nearby satellite PHCs (n = 9). Of 10 women who were adherent to PMTCT treatment, only one woman lived less than 30 minutes from the health facility. [11 

Conclusions

Our study argues the clear importance of motivating factors that outweigh barriers to PMTCT uptake and adherence at five levels of the socio-ecological framework. The roll out of Option B + as policy for pregnant women in Papua, which means inclusion of HIV testing as a routine part of pregnancy screening, has improved identification of HIV-positive women and their enrolment in the program. Further strengthening of the PMTCT program is necessary to ensure continuous enrolment of new cases while maintaining adherence of women in HIV care by addressing barriers or potential inhibitors to long-term treatment. These include avail- ability of strategies to identify and counsel women with doubts regarding ARV efficacy early in the program, establishment of support for women in need, a continuous campaign to reduce stigma and discrimination at the community level, availability of adequate human resources, reduction of long waiting times, and increased privacy during return visits.