“The sky is the limit”: adhering to antiretroviral therapy and HIV self‐management from the perspectives of adolescents living with HIV and their adult caregivers

Abstract

IntroductionWorldwide, HIV-related mortality among adolescents living with HIV (ALHIV) increased by 50% from 2005 to 2012 and is attributed in part to a lack of support for adolescent retention to care and adherence to antiretroviral therapy (ART). This vulnerability reinforces the need to better understand incomplete ART adherence among ALHIV, particularly in sub-Saharan Africa, where the majority of the world's 2.1 million ALHIV reside.MethodsFrom December 2011 to February 2012, we conducted in-depth interviews with 32 ALHIV (aged 15 to 18) and 23 of their adult caregivers in the Copperbelt Province of Zambia. Interviews were transcribed and translated. An iterative qualitative process was used to code and analyze the data and main themes were summarized regarding the barriers to and facilitators of ART adherence.ResultsMore than a quarter of ALHIV reported missing a day or more of ART (ranging from one day to six months). Barriers to ART adherence included fear of disclosure and anticipated stigma. Few youth were willing to take their drugs outside of the home, which led to missed doses of ART. Similarly, families tended to manage HIV within the home only. As a result, although caregivers and families were often the greatest source of emotional and instrumental support, they coped with HIV in isolation of other potential support from their communities, schools or churches. Factors that supported ART adherence included attending clinic-sponsored youth groups, wanting to maintain one's health and using phone and clock alarms. Involvement of adult caregivers in HIV management varied greatly and was often based on the age and health status of the youth. Some caregivers struggled with letting the adolescents assume responsibility for their medication, and ALHIV had few self-management skills and tools to help them regularly take ART.ConclusionsThese data highlight the importance of families and home environments in supporting adherence to ART among ALHIV. Skill-building and family-based interventions to prepare ALHIV and their adult caregivers for HIV self-management and HIV status disclosure by youth are of paramount importance. Future research and programmes also need to address the fears adolescents and families have regarding HIV-related stigma that shape young peoples’ adherence behaviours.

Experiences along the HIV care continuum: perspectives of Kenyan adolescents and caregivers

“…Consistent with other studies (Denison et al, 2015; Mburuet al, 2015; Mutumba et al, 2015; Mutwa et al, 2013; Wolf et al, 2014), adolescents in our study who had access to one or more supportive environments including family, school, and/or health facility were successfully retained in care. For some, however, lack of support at school and health facilities was especially problematic resulting in missed medication doses and/or cycling in and out of care.…”

“…As noted by other researchers, approaches by providers and school administrators that may help to improve engagement in care and warrant further study include having open conversations and acknowledging challenges faced by adolescents in adhering to their drug regimen, and working together to identify solutions (Bernays, Paparini, Gibb, & Seeley, 2016; Denison et al, 2015). Additionally, development of new drug formulations that are long-acting, more tolerable and less burdensome (e.g., smaller tablets, chewable or liquid alternatives, once-a-day pills) may make a significant contribution toward improving engagement in care for adolescents living with HIV in resource-poor settings with limited clean water availability (Adejumo, Malee, Ryscavage, Hunter, & Taiwo, 2015; Bygrave et al, 2012).…”

“…Growing recognition of the high vulnerability of HIV-infected adolescents has led to a number of recent qualitative studies examining the lived experiences of sub-Saharan youth as well as barriers to full engagement in care services (e.g., Denison et al, 2015 in Zambia; Mutumba et al, 2015 in Uganda; Wolf et al, 2014 in Kenya; and Mutwa et al, 2013 in Rwanda). The common theme of these studies is that fear of stigma and isolation is a primary concern for adolescents and presents a major barrier to obtaining and adhering to care.…”

An update on the HIV treatment cascade in children and adolescents

“…Table 3 [60][61][62][63][64][65][66] summarizes some of the available studies from developed, developing, and middle-income countries. Some of the common factors that have emerged as promoting adherence include consistency of caregiver, family support, disclosure, methods for remembering to take medication (e.g.…”

A Framework for Health Communication Across the HIV Treatment Continuum

“…96,123,137–143 Similarly, internalized stigma and negative self-image negatively impact adherence. 126,132,133,140,144 On the other hand, perceived self-efficacy for adherence and for coping with the challenges of ART, self-esteem, and perceived support from family and friends foster adherence. 129,133,145–147 …”