A phenomenological study on experiences of people living with HIV and AIDS : towards the development of a user - led interview model in the Vhembe District, Limpopo Province

Abstract

Background information: Persistent poor health outcomes among People Living with HIV and AIDS (PLWH) is a concern for service users and the HIV care system. Since its discovery, different AIDS response strategies were implemented but the level of poor health outcomes among PLWH prompts the need for other dimensions in the AIDS response. Purpose: The purpose of this study was to explore and describe ‘lived experiences’ of PLWH in order to utilise their personal experiences to develop a user- led intervention model. Methods: From a phenomenological orientation, an in-depth interview was used to gather data from seventeen PLWH who are living in communities. Purposive sampling was used to locate the participants. The compiled data collected was then analysed using the Collaizzi’s seven-step data analysis strategy. This was followed by a focus group discussion session which was held with nine of the seventeen participants. Findings: The study found that communities’ meaning of HIV and AIDS is outdated as it is still loaded with stigma and discrimination. Consequently, it alienates PLWH living in communities, and thus compounds poor health outcomes among PLWH. Many PLWH view themselves through their communities’ meaning of HIV and AIDS. the shared meaning of HIV and AIDS by communities created a complex task for PLWH to reconcile their prior meaning of living with HIV and the ‘new’ meaning they acquired post-diagnosis. Due to this, many PLWH experience high levels of intrapersonal and interpersonal challenges. Intrapersonal challenges manifest as self and anticipated stigma while the interpersonal ones result in poor relationships in different setting. It was also found that the availability of antiretroviral treatment significantly changed the meaning of living with HIV and AIDS for many PLWH as it provided tangible medical support to mitigate the impact of HIV and AIDS. In addition, the availability of different types of social support from family and non-family sources reassured and gave them hope for a better life. However, the availability of medical treatment and social support could not completely buffer the intrapersonal and interpersonal challenges experienced by PLWH in their daily lives. They had to continually fight for their social space post diagnosis through activation of two major coping strategies, namely emotion and problem-solving focussed strategies. Significant features of these strategies are that they changed their thinking patterns and engaged in actual activities to improve the quality of their lives. Through these strategies, many PLWH attained relative post traumatic growth. This study found that through their lived experiences, they command personal competence to guide user-led HIV care interventions as they clearly articulated the design, content and approach for user-driven HIV care. Conclusions and recommendations: The psychosocial dimension of living with HIV and AIDS in HIV care is not adequate as many PLWH who are in care experience poor health outcomes long after they have been diagnosed until they received psychosocial support from other PLWH. On this basis, a psychosocial seven-step user-led intervention model was designed to provide psychosocial education, care and support to PLWH, families, support groups and community mobilisation for HIV care. The implementation of a true psychosocial user-led intervention model in the continuum of care which recognises the interaction between the three dimensions of the health condition should be located at the point of entry into HIV care to ensure timeous access by PLWH and their families.