Rethinking the family in the context of care for adolescents living with HIV in Swaziland

Abstract

Drawing from 18 months of ethnographic fieldwork in one urban and one rural setting in Swaziland, involving 13 case studies of adolescents living with HIV, in this article we explore the meaning of the family as it applies to Swazi adolescents' everyday life. Our findings suggest that the meaning of the family is constantly evolving and transforming based on changing needs of, and expectations by, adolescents in different contexts and moments of the care continuum. Central to the meaning of the family is a strong desire for belonging - that is, being accepted, welcomed and appreciated. Traditional institutions that used to regulate where children belong still shape adolescents' perceptions, hopes and desires, but may also prevent their realisation. Support groups are important but do not substitute for the familial belongings adolescents living with HIV have lost, and long for. Policymakers, programme managers and health providers working with adolescents living with HIV need to embrace the complexity and dynamism of the meaning of family and base their policies, programmes, standards and guidelines not only on the factual care arrangements that adolescents find themselves in, nor on legal definitions of rights and responsibilities, but also on what adolescents want.

Keywords: Adolescents; HIV care; Swaziland; family; support groups.