“At home, no one knows”: A qualitative study of retention challenges among women living with HIV in Tanzania

Abstract

Introduction Despite the broad success of Prevention of Mother-to-Child Transmission of HIV (PMTCT) programs, HIV care engagement during the pregnancy and postpartum periods is suboptimal. This study explored the perspectives of women who experienced challenges engaging in PMTCT care, in order to better understand factors that contribute to poor retention and to identify opportunities to improve PMTCT services. Methods We conducted in-depth interviews with 12 postpartum women to discuss their experiences with PMTCT care. We used data from a larger longitudinal cohort study conducted in five PMTCT clinics in Moshi, Tanzania to identify women with indicators of poor care engagement (i.e., medication non-adherence, inconsistent clinic attendance, or high viral load). Women who met one of these criteria were contacted by telephone and invited to complete an interview. Data were analyzed using applied thematic analysis. Results We observed a common pathway that fear of stigma contributed to a lack of HIV disclosure and reduced social support for seeking HIV care. Women commonly distrusted the results of their initial HIV test and reported medication side effects after care initiation. Women also reported barriers in the health system, including difficult-to-navigate clinic transfer policies and a lack of privacy and confidentiality in service provision. When asked how care might be improved, women felt that improved counseling and follow-up, affirming patientprovider interactions, and peer treatment supporters would have a positive effect on care engagement.

Perceptions of barriers and facilitators to implement programs for prevention of mother-to-child transmission of HIV-Mozambique

“…Women in this study reported side effects as barriers to maintaining treatment, with tolerance depending on the degree of symptoms-feeling more relief than discomfort-and the participants' health status. This is consistent with studies from Tanzania exploring barriers to treatment adherence (17)(18)(19) . Poverty, reflected, for example, in the lack of food to meet the necessary demands of ARTs, exacerbated intolerance to side effects.…”

Health care costs associated with clinic visits for prevention of mother-to-child transmission of HIV in Dar es Salaam, Tanzania

“…ANC uptake can be improved, for example, by using community health workers to do sensitization in communities [27] . However, retention in PMTCT care requires addressing health system barriers (by ensuring good quality of care, [47,48] and easier access to health facilities and to family planning) [48,49] and as well as the strengthening of longer-term individual factors including education, household wealth and employment. [49] Thus, to improve both uptake and retention, multifaceted and multilevel interventions are required involving multiple stakeholders such as community health workers, midwives, and families.…”

Effect of peer-mother interactive programme on prevention of mother-to-child HIV transmission outcomes among pregnant women on anti-retroviral treatment in routine healthcare in Dar es Salaam, Tanzania

“…Peer support services have been widely in use to mitigate barriers of uptake, adherence and outcomes in HIV and PMTCT services in low-and middle-income countries [10][11][12]. The motivation for peer support services has been partly driven by challenges of human resource shortages in understaffed overburdened health care systems, and also the demand for counselling, adherence and psychosocial support among women receiving PMTCT care [10,[13][14][15][16][17]. Although there is rich qualitative literature on the engagement of peer-mothers in PMTCT care [14,[18][19][20], the literature remains scarce on quantitative evaluation of the effect of peermothers on PMTCT outcomes, specifically ART adherence and retention, viral suppression and MTCT, in the era of lifelong ART for PMTCT [10][11][12]21].…”