Exploring the self-management needs of adolescents living with HIV in the Nelson Mandela Bay area of the Eastern Cape

[摘要] ENGLISH SUMMARY : Background: An increased number of human immunodeficiency virus (HIV) infected children are progressing to adolescence and beyond because of effective antiretroviral therapy (ART). Adolescents receiving ART tend to have poorer treatment outcomes compared to adults. HIV is now classified as a chronic illness and adolescents need the support of the whole family to self-manage (handle, direct and control) their chronic illness. When individuals and their families acquire self-management skills, they become responsible for the management of their chronic conditions, are able to control the illness and acquire healthy behaviours. Little is known about self-management amongst adolescents who live with HIV (ALHIV) and no self-management support programmes exist in the context of the Eastern Cape, South Africa.Aim and objectives: This study aimed to explore the self-management needs of ALHIV in the Nelson Mandela Bay area of the Eastern Cape in order to make recommendations that can be used to develop a programme to support adolescents' HIV self-management. Specific objectives were to explore adolescents' beliefs, knowledge and understanding of their illness; describe their self-regulation skills and abilities and identify the resources adolescents utilise to facilitate them to manage their illness.Methods: A qualitative descriptive design was applied. Thirteen adolescents between the ages of 14 and 19 years attending the West End and Booysen Park clinics were purposely selected. The data were collected through individual interviews. Data analysis was done by using the six steps described by Creswell. Trustworthiness was enforced by adhering to the principles of credibility, confirmability, transferability and dependability.Results: The research findings demonstrated that ALHIV, have limited knowledge and understanding about HIV and safe sex. Some ALHIV lack self-regulation skills and abilities such as taking their treatment, coping mechanisms, effective communication and disclosure of their HIV status to people outside the family. HIV services were not adolescent-friendly, with no dedicated services for adolescents and long queues. Support from family and friends plays a key role in the lives of the adolescents living with HIV.Self-management programmes should include strategies to improve HIV and sexual health knowledge and self-regulation skills, particularly through using technology. Adolescent-friendly healthcare services and the involvement of parents and peers may be important to improve self-management support for ALHIV. Conclusion: As an adolescent grow older, the responsibility of their care is transferred to them and they become more independent. The study revealed that ALHIV have several self-management needs; a programme that will support adolescents and their caregivers to acquire self-management skills may lead to better treatment and health outcomes.

[发布机构] Stellenbosch University