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

Chandia, J. (2017-03)

Thesis (PhD)--Stellenbosch University, 2017.

Thesis

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 considerations Informed 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.

AFRIKAANSE OPSOMMING : Inleiding: In Augustus 2003 is 'n besluit geneem deur die Suid-Afrikaanse regering om die gebruik van anti-retrovirale middels in die openbare gesondheidsdiens as deel van die omvattende reaksie op die MIV-pandemie in te sluit. Die Oos-Kaap het die besluit implementeer in Mei 2004. Die doel van die studie was om die ervarings van openbare sektor pasiente in die Oos-Kaap wat antiretrovirale (ARV) medikasie gebruik, te verken. Die hoofdoelwit was om die persoonlike, gesondheidsdiens en kontekstuele ervarings van MIV-positiewe pasiente op antiretrovirale middels in die staatsgesondheidsdiens in die Oos-Kaap te verken, met die volgende spesifieke doelwitte: - Om te verken hoe pasiente die neem van ARV's in hul lewenstyl inkorporeer. - Om die oortuigings en gevoelens van pasiente met betrekking tot hul ARV's te verken. - Om die positiewe en negatiewe ervarings van pasiente aangaande bywoning van die ARV-kliniek te verken. - Om te verken hoe ander soos familie en vriende reageer op hul neem van ARV's. - Om te verken wat hulle van die ARV's verwag. - Om te ondersoek wat hulle motiveer om die ARV's neem. - Om die positiewe en negatiewe kragte wat die pasient se vermoe om te voldoen aan die behandeling beïnvloed te verken. - Om die sosiale, kulturele en kontekstuele kwessies te verstaan wat 'n impak het op die pasient se vermoe om ARV's te neem. - Om enige ander onverwagte kwessies wat ontstaan in die pasient se konteks of ervaring wat belangrik is vir hul vermoe om ARV's te neem is ontlok. Die resultate van die studie sal die strategiee inlig vir die implementering van die anti-retrovirale program in die Oos-Kaap. Metodes: Studie ontwerp: 'n Kwalitatiewe studie ontwerp is gebruik. 'n Doelgerigte steekproef van MIV-positiewe pasiente op antiretrovirale middels wat voldoen het aan die insluitingskriteria was gekies uit MIV Klinieke in Lusikisiki, Mthatha, Oos-Londen en Port Elizabeth. Data oor die ervarings van die deelnemers is ingesamel deur onderhoude, uit die daaglikse verhale in die medisyne dagboeke saamgestel deur die pasiente en fokusgroepe van pasiente en pasiente se behandelingsondersteuners / versorgers en direkte waarneming. Data van die individue en fokusgroeponderhoude was ingesamel totdat 'n versadigingspunt bereik was. Ontleding: Die data-analise is gedoen met behulp van ATLAS-ti, Weergawe 6.2, rekenaarprogram, vir die ontleding van kwalitatiewe data. Etiese oorwegings Ingeligte toestemming was verkry vanaf al die deelnemers en vertroulikheid was verseker. Etiese goedkeuring was verkry van die Universiteit van Stellenbosch en Walter Sisulu Universiteit se Etiekkomitees. Toestemming was verkry van die hoofde van kliniese bestuur van die deelnemende hospitale. Resultate: Die persoonlike ervarings het die belangrikheid beklemtoon van die kennis van pasiente se MIV-status deur middel van toetsing as 'n poort om toegang te verkry tot sorg, al was die besluit om te toets nie 'n maklike een nie, as gevolg van die vrees vir stigma en diskriminasie. Bekendmaking van MIV-status was selektief vir dieselfde rede. Aanvaarding van MIV-status, gebruik van tegnologie, veral selfone, en behandelingsondersteuners het nakoming van die ARVs gefasiliteer. The gesondheidsvoordele van ARV's het nakoming gemotiveer en die uitdagings van die newe-effekte oorskadu. Behalwe vir 'n paar positiewe ervarings wat verband hou met die gesondheidsdiens, het pasiente uitdagende ervarings gehad. Dit het ingesluit negatiewe gesondheidsverskaffer houdings, stigma en diskriminasie, 'lang wagtye, onopsetlike openbaarmaking, 'n gebrek aan persoongesentreerde sorg, ongelykheid in toegang tot sorg, swak infrastruktuur, oorbevolking en onhigieniese praktyke en omgewing. Die positiewe kontekstuele ervarings het verband gehou met die ondersteuning van die familie en interaksie met ander deelnemers. Sommige familielede en ander was ook verantwoordelik vir die negatiewe ervarings van die deelnemers, veral stigma en diskriminasie. Uitdagende ervarings wat verband gehou het met voedselonsekerheid en swak sosio-ekonomiese status was baie prominent. Die sosio-kulturele ervarings het hoofsaaklik verband gehou met die gevolge van tradisionele medisyne met betrekking tot die ARVs, veral wanneer hulle saam geneem was. Gesondheidswerkers het die praktyk ontmoedig, aangesien dit die effektiwiteit van die ARV's kan beïnvloed. Afsluitings: Die gevolgtrekkings is gebaseer op die doelwitte van die studie. Die inlywing van ARV's in die lewenstyl van die pasiente was gefasiliteer deur die behandelingsondersteuners en die gebruik van tegnologie, hoofsaaklik selfone. Die pasiente het geglo dat ARVs hul lewe gered het en het vir hulle hoop gegee om lank genoeg te leef om hul aspirasies in die lewe, bv. die opvoeding van hul kinders, na te kom. Gebrek aan aanvaarding van MIV-status, dwelm- en alkoholmisbruik was beskou as 'n paar van die ernstige uitdagings vir die nakoming en die voordele van gesondheid ten opsigte van ARVs. ‘n Paar, maar strydige, positiewe ervarings wat verband gehou het met die MIV-kliniek, was die praktyk van persoon gesentreerde sorg, beskikbaarheid van ARV's, pasient onderwys en die deel van ervarings met ewekniee. Die negatiewe ervarings het die MIV-kliniek ervarings oorheers. Dit het ingesluit 'n gebrek aan persoongesentreerde sorg, die praktyk van stigma en diskriminasie deur gesondheidswerkers, swak onhigieniese infrastruktuur en vrese oor die volhoubaarheid van die verskaffing van ARV's in die staatsdiens. Die positiewe reaksie van die familie en ander in die vorm van ondersteuning het bygedra tot die verbetering van die gesondheid van die pasiente, terwyl die negatiewe reaksies, veral stigma en diskriminasie, ondersteuning in die gedrang gebring het, en swak gesondheid vir die pasiente aangevuur het. Sosio-kulturele en ander kontekstuele uitdagings wat verband gehou het met die neem van ARV's was die wye praktyk van stigma en diskriminasie teen mense wat met MIV leef deur families en die samelewing in die algemeen wat gelei het tot 'n gebrek aan ondersteuning. Armoede, voedselonsekerheid en die gelyktydige gebruik van tradisionele medisyne saam met ARV's was ook uitgelig. Ander onverwagte kwessies wat uitgelig was, was die belangrikheid van die rol van die behandeling ondersteuners in die sorg van die mense wat met MIV leef en die behoefte om diegene met geen bron van inkomste met een of ander vorm van vergoeding te oorweeg. Die opkomende stygende uitdaging van dwelm- en alkoholmisbruik in verhouding tot pasiente op ARV's was uitgelig. Spesifieke aanbevelings is vir al die kwessies wat hierbo uitgelig is, gemaak.

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