‘There are no more secrets’: acceptability of a family-centered model of care for HIV positive children in Eswatini

Abstract

Background HIV-positive children have lagged adults on retention in HIV care and viral suppression. To address this gap, Eswatini’s Ministry of Health started a pilot family-centered HIV care model (FCCM) targeting HIV-positive children under 20 years old and their families. Methods We conducted semi-structured in-depth interviews with 25 caregivers and 17 healthcare workers (HCWs) to assess acceptability of FCCM in four pilot FCCM health facilities in Hhohho region of Eswatini. Thematic analysis with inductive and deductive codes was used to identify salient themes. Results Caregivers and HCWs reported FCCM benefits including strengthening the family bond, encouragement for family members to disclose their HIV status and supporting each other in taking antiretroviral drugs. Caregivers reported that they spent fewer days in clinic, experienced shorter waiting times, and received better counseling services in FCCM compared to the standard-of-care services. FCCM implementation challenges included difficulty for families to attend clinic visits together (e.g., due to scheduling conflicts with weekend Teen Support Club meetings and weekday FCCM appointments). Both HCWs and caregivers mentioned difficulty in sharing sensitive health information in the presence of other family members. HCWs also had challenges with supporting caregivers to disclose HIV status to children and managing the larger group during clinic visits. Conclusions FCCM for HIV-positive children was acceptable to both caregivers and HCWs, and they supported scaling-up FCCM implementation nationally. However, special considerations should be made to address the challenges experienced by participants in attending clinic visits together as a family in order to achieve the full benefits of FCCM for HIV positive children.

A Facility-based Family Support Intervention to Improve Treatment Outcomes for Adolescents on Antiretroviral Therapy in the Cape Metropole, South Africa

“…This may be attributed to the supportive environment created by the Family Club and the meaningful participation of HCWs in the disclosure process. 23 Additionally, upon being disclosed to, ALHIV receives adherence counseling which aims to help them by taking control on those aspects that they do have control over-their health and (hope for) future aspirations.…”

“…As reported in other studies, fear of HIV-related stigma or worries that the relationship may change over time held them back. 10,23,25,26,31 This suggests that ALHIV require a high level of mutual trust to disclose to persons outside of their immediate family. This also points to high levels of mistrust to others and the fear of discrimination if their status is advertently and inadvertently disclosed.…”

A randomized controlled trial evaluating the effects of a family-centered HIV care model on viral suppression and retention in care of HIV-positive children in Eswatini

“…Challenges to program implementation that were noted in qualitative interview data with FCCM participants (caregivers and health workers) are published in a separate analysis [ 13 ]. These included additional costs for clinic visits; schedule conflicts for children and adolescents; limited male participation; difficulties with disclosure and limited experience counseling families.…”

“…Qualitative findings suggested that FCD patients benefited from health education and increased social support. Qualitative analysis of the acceptability and feasibility of the FCCM in Eswatini revealed benefits including more open discussion and mutual support among family members about HIV resulting from health workers encouragement to disclose HIV status within the family and health workers improved ability to address needs of individuals by providing care in the context of the family [ 13 ].…”

“…This could have introduced additional bias in our results using the imputed ITT analysis. Thus, it is unclear if the FCCM program may have modestly improved children’s viral suppression compared to the SOC group, but we are confident that FCCM did not negatively affect children’s viral suppression and based on qualitative analyses previously reported, could have had other benefits for the family and health workers implementing the program [ 13 ]. Additionally, given the high levels of viral suppression, retention, and adherence at enrollment in both FCCM and SOC children, it would have required a significantly larger sample size to be able to detect a difference in these outcomes with the FCCM program.…”