The experiences of HIV positive patients on antiretroviral drugs attending the public service health institutions in the Eastern Cape Province : a qualitative study

[摘要] ENGLISH SUMMARY : Introduction: In August 2003, a landmark decision was made by the South African government to include the use of antiretroviral drugs in the public health service as part of the comprehensive response to the HIV pandemic. The Eastern Cape Province implemented the decision in May 2004.The aim of this study was to explore the experiences of patients taking antiretroviral (ARV) medication in the public sector of the Eastern Cape Province. The main objective was to explore the personal, health service and contextual related experiences of HIV positive patients on antiretroviral drugs attending the public service health institutions in the Eastern Cape Province with the following specific objectives:- To explore how patients incorporate the taking of ARVs into their lifestyle.- To explore the beliefs and feelings of patients regarding their ARVs.- To explore the positive and negative experiences of patients attending the ARV clinic.- To explore how others such as family and friends react to their taking of ARVs.- To explore what they expect of the ARVs.- To explore what motivates them to take the ARVs.- To explore the positive and negative forces that affect the patient's ability to adhere to the treatment.- To understand the social, cultural and contextual issues that impact on the patient's ability to take ARVs.- To elicit any other unanticipated issues that arise in the patient's context or experience that are important to their ability to take ARVs.The results of the study will inform the strategies for implementing the antiretroviral programme in the Eastern Cape Province.Methods: Study design: A qualitative study design was used. A purposive sample of HIV positive patients on antiretroviral drugs who met the inclusion criteria were selected from HIV Clinics at Lusikisiki, Mthatha, East London and Port Elizabeth. Data on the experiences of the participants were collected via interviews, from daily narratives in the medicine diaries compiled by the patients,focus groups of patients and patient's treatment supporters/care givers, and participant observation. Data from the individual and focus group interviews were collected until a point of saturation was reached.Analysis: The data analysis was done using ATLAS-t.i Version 6.2 computer programme for the analysis of qualitative data.Ethical considerationsInformed consent was obtained from all participants and confidentiality ensured. Ethics Committee approval was obtained from the University of Stellenbosch and Walter Sisulu University. Permission was obtained from the Heads of Clinical Governance of the participating hospitals.Results: The personal experiences of participants highlighted the importance of the knowledge of one's HIV status through testing, as a gateway to accessingcare, although the decision to test was not an easy one due to the fear of stigma and discrimination. Disclosure of HIV status was selective for the same reason. Acceptance of HIV status; use of technology, especially mobile phones; andtreatment supporters facilitated adherence to the ARVs.The health benefits of ARVs motivated adherence and outweighed the challenges of the side effects.Save for a few positive experiences related to the health service, patients had challenging experiences. These included negative health provider attitudes, stigma and discrimination, long waiting times, inadvertent disclosure, lack of person centred care, inequity in access to care, poor infrastructure, overcrowding and unhygienic practices and environment.The positive contextual experiences related to support from the family and others the participants interacted with. Some family members and others were also responsible for the negative experiences the participants were subjected to, particularly stigma and discrimination. Challenging experiences related to food insecurity and poor socio-economic status featured quite prominently. The socio-cultural experiences mainly related to the effects of traditional medicine in relation to the ARVs, especially when taken concurrently. The healthcare providers discouraged the practice as it could affect the efficacy of the ARVs.Conclusions: The conclusions were based on the objectives of the study. The incorporation of ARVs into the lifestyle of the patients was facilitated by the treatment supporters and the use of technology, mainly mobile phones. The patients believed that ARVs saved their life and gave them hope to live long enough to fulfil their aspirations in life, e.g., bringing up of their children. Lack of acceptance of HIV status, and drug and alcohol abuse were considered to be some of the serious challenges to adherence and the health benefits of ARVs.A few but inconsistent positive experiences related to the HIV clinic included some practice of person centred care,availability of ARVs,patient education and sharing of experiences with peers. The negative experiences dominated the experiences at the HIV clinic. These included lack of person centred care, the practice of stigma and discrimination by the health care providers, poor unhygienic infrastructure, and fears about the sustainability of the supply of ARVs in the public service. The positive reaction of the family and others in the form of support contributed to improvement in the health of the patients while the negative reactions, especially stigma and discrimination, compromised support and fuelled ill health for the patients. Socio-cultural and other contextual challenges related to the taking of ARVs were the rampant practice of stigma and discrimination against people living with HIV by families and the society at large, leading to lack of support. Poverty, food insecurity and the use of traditional medicine concurrently with ARVs were also highlighted. Other unanticipated issues raised were the importance of the role of the treatment supporters in the care of the people living with HIV and the need to consider those who have no source of income for some form of remuneration. The emerging rising challenge of drug and alcohol abuse in relation to patients on ARVs was highlighted and is a concern. For all the issues raised above, specific recommendations have been made.

[发布机构] Stellenbosch University