title: Stigma, Facility Constraints, and Personal Disbelief: Why Women Disengage from HIV Care During and After Pregnancy in Morogoro Region, Tanzania.
abstract: Millions of children are living with HIV in sub-Saharan Africa, and the primary mode of these childhood infections is mother-to-child transmission. While existing interventions can virtually eliminate such transmission, in low- and middle-income settings, only 63 % of pregnant women living with HIV accessed medicines necessary to prevent transmission. In Tanzania, HIV prevalence among pregnant women is 3.2 %. Understanding why HIV-positive women disengage from care during and after pregnancy can inform efforts to reduce the impact of HIV on mothers and young children. Informed by the tenets of Grounded Theory, we conducted qualitative interviews with 40 seropositive postpartum women who had disengaged from care to prevent mother-to-child transmission (PMTCT). Nearly all women described antiretroviral treatment (ART) as ultimately beneficial but effectively inaccessible given concerns related to stigma. Many women also described how their feelings of health and vitality coupled with concerns about side effects underscored a desire to forgo ART until they deemed it immediately necessary. Relatively fewer women described not knowing or forgetting that they needed to continue their treatment regimens. We present a theory of PMTCT disengagement outlining primary and ancillary barriers. This study is among the first to examine disengagement by interviewing women who had actually discontinued care. We urge that a combination of intervention approaches such as mother-to-mother support groups, electronic medical records with same-day tracing, task shifting, and mobile technology be adapted, implemented, and evaluated within the Tanzanian setting.
authors.affiliation: Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Baltimore, MD, USA. shannon.mcmahon@jhu.edu.|Institute of Public Health, Heidelberg University, Heidelberg, Germany. shannon.mcmahon@jhu.edu.
authors.forename: Shannon A
authors.initials: SA
authors.lastname: McMahon
authors.affiliation: Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Baltimore, MD, USA.
authors.forename: Caitlin E
authors.initials: CE
authors.lastname: Kennedy
authors.affiliation: Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Baltimore, MD, USA.
authors.forename: Peter J
authors.initials: PJ
authors.lastname: Winch
authors.affiliation: Maternal & Child Health, Health Office, United States Agency for International Development (USAID), Dar es Salaam, Tanzania.
authors.forename: Miriam
authors.initials: M
authors.lastname: Kombe
authors.affiliation: Muhimbili University of Health and Allied Sciences, PO Box 65015, Dar es Salaam, Tanzania.
authors.forename: Japhet
authors.initials: J
authors.lastname: Killewo
authors.affiliation: Muhimbili University of Health and Allied Sciences, PO Box 65015, Dar es Salaam, Tanzania.
authors.forename: Charles
authors.initials: C
authors.lastname: Kilewo
mesh_terms: D000328:Adult; D019380:Anti-HIV Agents / Q000627:therapeutic use; D002985:Clinical Protocols; D005260:Female; D015658:HIV Infections / Q000188:drug therapy / Q000517:prevention & control*; D006268:Health Facilities; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D018445:Infectious Disease Transmission, Vertical / Q000517:prevention & control*; D000068097:Maternal Health; D009035:Mothers; D010358:Patient Participation; D049590:Postpartum Period / Q000523:psychology*; D011247:Pregnancy; D011251:Pregnancy Complications, Infectious / Q000188:drug therapy*; D037841:Pregnant People / Q000523:psychology*; D036301:Qualitative Research; D057545:Social Stigma; D013636:Tanzania; D055815:Young Adult
chemical_list: D019380:Anti-HIV Agents
keywords: Engagement in care; HIV; Maternal health; Prevention of maternal-to-child transmission; Tanzania; Vertical transmission