Caring for adolescents by older carers in the context of HIV combination prevention interventions in rural KwaZulu-Natal: an ethnographic approach.

Abstract

In South Africa and in many other developing countries, grandparents/older carers have taken the role of caring for children, even where the older carers themselves have no steady source of income and are suffering from chronic illnesses. While previous studies have documented the experiences of older carers who are raising young children, few researchers have examined the caring of adolescents and the care relationships from the perspectives of both the older carers and adolescents in South Africa. The study examined the caring of adolescents by older carers in a rural KwaZulu-Natal district in which HIV prevention interventions called DREAMS were implemented. Following an ethnographic approach, this study used repeat in-depth interviews, key informant interviews, and observations to elicit information from six adolescents aged 13 to 19, six older carers aged 50 and above, and two HIV programme facilitators (n=14) over 12 months, from October 2017 to September 2018, in the uMkhanyakude district, KwaZulu-Natal. Written informed consent was obtained from all individuals before participation. All data were collected in isiZulu and audio-recorded, transcribed, and translated into English. The researcher combined both thematic and dyadic analysis approaches to understand care relationships and the lives of adolescents and their older carers in order to add a deeper understanding of the data. A multitheoretical approach including the life course perspective, the social-ecological model, and the self-management framework was applied to examine and interpret data. The findings of the study indicated a dynamic process which influenced how older carers ended up taking the primary care responsibility of their grandchildren. The factors that positively or negatively affected the quality of relationships between adolescents and their older carers were adolescents’ difficult behaviours and carers’ behaviours (positive and negative). Gender was also used to frame the labels ascribed to the adolescents. The consequences of stigmatised labelling of adolescents negatively affected the adolescents in older carer families. Additionally, generational perspectives between adolescents and their older carers of romantic sexual viii relationships were highlighted. Further, the motivators and barriers to participation in DREAMS interventions of adolescents in older carer families were influenced by the four levels of the socio-ecological model namely individual, interpersonal, organisational, and community levels. The motivating factors included obtaining HIV and sexual and reproductive health information, perceived changes in risky behaviours, and improved care relationships and communication between adolescents and the older carers. The barriers to participation in DREAMS interventions included internalized stigma, negative peer pressure, and caregivers’ lack of information about the HIV prevention interventions as well as challenges related to the organisation responsible for implementing DREAMS interventions. Lastly, the older carers employed a range of self-management practices for chronic conditions to promote health and well-being; while, sometimes, putting their lives at risk. In conclusion, the adolescents and their older carers were emotionally distressed, thereby impacting their well-being and the quality of the care relationships. Furthermore, adolescents faced challenges as they explored their sexuality and transit to adulthood. The strenuous relationships with the adolescents, rather than chronic conditions, were the main stressors that undermined the older carers’ ability to selfmanage chronic illnesses. Further studies are required to understand the impact of COVID-19 on older carer families and its influence on self-management of chronic illnesses and caring for adolescents.