Rights-based Services for Adolescents Living with HIV: Adolescent Self-efficacy and Implications for Health Systems in Zambia

According to this paper, which appeared in the Reproductive Health Matters Journal, a rights-based approach in HIV service delivery for adults is increasingly taking root in sub-Saharan Africa. Yet there has been comparatively little progress in strengthening a rights-based approach to adolescent HIV services. This paper provides examples of programmes in Zimbabwe, Uganda, Tanzania, Botswana, and South Africa and calls for: (1) adolescent services to be linked to both paediatric and adult services, (2) peer networks to be established to increase adolescents' ability to collectively voice their concerns and support each other, (3) interventions supporting adolescents’ control over self-disclosure, (4), and for adolescent health to become a training specialty in sub-Saharan Africa.

The discussion paper is based on a study conducted between April and December 2010 in Zambia. Part of the study was designed to document the psychosocial and sexual and reproductive health needs of adolescents living with HIV. This paper explores how the evolving capacity of adolescents living with HIV is shaping their ability to express their needs and how the health services should respond. Semi-structured interviews were conducted with adolescents living with HIV (58) and health care providers (14). Eight focus group discussions were subsequently held with 53 additional adolescents living with HIV, two with 21 parents (1 urban and 1 rural), and three with 24 health care providers (2 urban and 1 rural).

A sense of rights, entitlement, and expectation

According to the paper, respondents seemed to embrace the concept of living positively and the rights of young people living with HIV to enjoy a fulfilling sexual life. A majority believed that people living with HIV should be allowed to marry and have children, if they so desired, for example. They were also quite articulate about their entitlement to control disclosure of their HIV status to others.

Expressing unmet needs

Many saw the health system as weak and not meeting their HIV, sexual and psychosocial needs, or fulfilling their right to confidentiality or addressing them as a separate group. The adolescents frequently expressed the need for health providers to respect their privacy, be more friendly, and less judgemental. Less frequently, narratives of rights and entitlements emerged as they accused service providers of failing to meet their expectations. Further discussion suggested that the adolescents expected to have access to livelihood activities and skills training, which were available to adults (such as tailoring), while adolescents did not have access to these opportunities.

Acknowledgement of adolescent needs by health care providers and parents

There was an acknowledgement from both health care providers and parents that adolescents’ access to appropriate HIV services was important, in spite of cultural and other barriers, but that achieving it would take time.

Based on the survey, the paper states that acknowledging adolescents’ evolving social and legal capacity and involving them in designing health programmes could strengthen delivery of interventions tailored to their needs. Findings suggest that health services in Zambia could be transformed to become more adolescent-friendly through a number of approaches:

• using participatory approaches to define adolescent services;
• identifying health care providers who could assume responsibility for care of adolescents and their transition from paediatric to adult services;
• strengthening health providers’ competencies to provide adolescent-friendly services;
• responding to individual circumstances as well as the wider social context of adolescents living with HIV i.e. in relation to social, economic, stigma, and other cultural barriers; and
• empowering adolescents living with HIV to advocate for themselves and become leading agents of change.