Abstract

In the context of severe human resource shortages in HIV care, task-shifting and especially community-based support are increasingly being cited as potential means of providing durable care to chronic HIV patients. Socio-ecological theory clearly stipulates that–in all social interventions–the interrelatedness and interdependency between individuals and their immediate social contexts should be taken into account. People living with HIV/AIDS (PLWHA) seldom live in isolation, yet community-based interventions for supporting chronic HIV patients have largely ignored the social contexts in which they are implemented. Research is thus required to investigate such community-based support within its context. The aim of this study is to address this research gap by examining the way in which HIV/AIDS competence in the household hampers or facilitates community-based treatment adherence support. The data was analyzed carefully in accordance with the Grounded Theory procedures, using Nvivo 10. More specifically, we analyzed field notes from participatory observations conducted during 48 community-based treatment adherence support sessions in townships on the outskirts of Cape Town, transcripts of 32 audio-recorded in-depth interviews with PLWHA and transcripts of 4 focus group discussions with 36 community health workers (CHWs). Despite the fact that the CHWs try to present themselves as not being openly associated with HIV/AIDS services, results show that the presence of a CHW is often seen as a marker of the disease. Depending on the HIV/AIDS competence in the household, this association can challenge the patient’s hybrid identity management and his/her attempt to regulate the interference of the household in the disease management. The results deepen our understanding of how the degree of HIV/AIDS competence present in a PLWHA’s household affects the manner in which the CHW can perform his or her job and the associated benefits for the patient and his/her household members. In this respect, a household with a high level of HIV/AIDS competence will be more receptive to treatment adherence support, as the patient is more likely to allow interaction between the CHW and the household. In contrast, in a household which exhibits limited characteristics of HIV/AIDS competence, interaction with the treatment adherence supporter may be difficult in the beginning. In such a situation, visits from the CHW threaten the hybrid identity management. If the CHW handles this situation cautiously and the patient–acting as a gate keeper–allows interaction, the CHW may be able to help the household develop towards HIV/AIDS competence. This would have a more added value compared to a household which was more HIV/AIDS competent from the outset. This study indicates that pre-existing dynamics in a patient’s social environment, such as the HIV/AIDS competence of the household, should be taken into account when designing community-based treatment adherence programs in order to provide long-term quality care, treatment and support in the context of human resource shortages.

Highlights

  • In order to guide patients successfully along the HIV/AIDS care continuum from testing and linkage to pre-antiretroviral treatment (ART) care, treatment initiation, treatment adherence and retention in care, sufficient attention must be paid to the psychosocial dimensions of chronic disease care [1,2,3]

  • After conceptualizing an HIV/AIDS competent household, a summary of which can be found in section 2 and a detailed description of which can be found in an article by Masquillier et al (2015) [34], the analysis focused on the interaction between the community health workers and the patient’s social environment

  • The analysis indicates, firstly, that community health workers do not work in a vacuum in the community

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Summary

Introduction

In order to guide patients successfully along the HIV/AIDS care continuum from testing and linkage to pre-antiretroviral treatment (ART) care, treatment initiation, treatment adherence and retention in care, sufficient attention must be paid to the psychosocial dimensions of chronic disease care [1,2,3]. Community support is being mobilized as a form of task-shifting in order to provide additional care for patients to support them to comply with treatment guidelines in resource-constrained contexts. Community-based support moves care closer to the person living with HIV/AIDS (PLWHA) and his/her social environment [8, 11,12,13]. Because responding to the long-term challenges of HIV/AIDS happens in continuous interaction between the individual and his/her immediate environment [14], the micro-social context surrounding the patient inevitably affects the efficacy of community support initiatives [15]. In the words of Nhamo, Campbell and Gregson (2010): “there is an urgent need for HIV/AIDS programmers to develop understandings of the way in which the pre-existing social dynamics of their target communities might facilitate or hinder their efforts” [22]

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