Conceptions of agency and constraint for HIV-positive patients and healthcare workers to support long-term engagement with antiretroviral therapy care in Khayelitsha, South Africa.
Identifieur interne : 000767 ( PubMed/Corpus ); précédent : 000766; suivant : 000768Conceptions of agency and constraint for HIV-positive patients and healthcare workers to support long-term engagement with antiretroviral therapy care in Khayelitsha, South Africa.
Auteurs : Erin Stern ; Christopher Colvin ; Nobom Gxabagxaba ; Charlotte Schutz ; Rosie Burton ; Graeme MeintjesSource :
- African journal of AIDS research : AJAR [ 1727-9445 ] ; 2017.
English descriptors
- KwdEn :
- Adult, Antiretroviral Therapy, Highly Active, Female, HIV Infections (diagnosis), HIV Infections (drug therapy), HIV Infections (epidemiology), Health Personnel (psychology), Humans, Male, Medication Adherence (psychology), Professional-Patient Relations, Public Health Surveillance, Qualitative Research, Risk Factors, Socioeconomic Factors, South Africa (epidemiology).
- MESH :
- diagnosis : HIV Infections.
- drug therapy : HIV Infections.
- epidemiology : HIV Infections, South Africa.
- psychology : Health Personnel, Medication Adherence.
- Adult, Antiretroviral Therapy, Highly Active, Female, Humans, Male, Professional-Patient Relations, Public Health Surveillance, Qualitative Research, Risk Factors, Socioeconomic Factors.
Abstract
In the context of the optimism around antiretroviral therapy (ART) as prevention of HIV/AIDS, addressing the barriers to long-term ART adherence is critical. This is particularly important given the tendency to individualise or use a blame discourse when exploring why HIV-infected patients "fail" to adequately adhere to ART, and not sufficiently exploring contextual reasons for poor adherence that may require varying solutions. This study took place at three clinics and one hospital in Khayelitsha, South Africa, to document the contextual factors that challenged ART adherence in this community. Interviews were conducted with 20 HIV-infected patients who had defaulted on their ART and were subsequently admitted to Khayelitsha hospital for clinical complications, and 9 ART service providers including doctors, nurses and HIV counsellors. Interviews assessed the reasons patients defaulted on ART and explored ways this could be prevented. Data from both groups were analysed collectively using thematic analysis. While the interviews revealed a landscape of environmental risks threatening adherence to ART, all patients managed to overcome the identified barriers at some point in their treatment phase, indicating the fluidity of patients' needs and decision making. Patients reported that distrustful relationships with service providers could inhibit their understanding of ART and/or interrupt their follow-up at clinics. Patients described their rationale and agency underlying non-adherence, such as testing their bodies' physical limits without ART medication. The study speaks to the need to appreciate contextual social and structural barriers related to ART adherence, and how these are negotiated differently by specific sub-groups, to support an appropriate response. It is imperative to not solely emphasise loss to follow-up but also assess patients' subjective trajectory of their ART journey, decision making and agency with adhering to ART, their relations with healthcare workers, and how these dynamics are intertwined with broader constraints in health systems.
DOI: 10.2989/16085906.2017.1285795
PubMed: 28367748
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sort="Gxabagxaba, Nobom" uniqKey="Gxabagxaba N" first="Nobom" last="Gxabagxaba">Nobom Gxabagxaba</name><affiliation><nlm:affiliation>a Division of Social and Behavioural Sciences, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Schutz, Charlotte" sort="Schutz, Charlotte" uniqKey="Schutz C" first="Charlotte" last="Schutz">Charlotte Schutz</name><affiliation><nlm:affiliation>b Clinical Infectious Diseases Research Initiative, Institute of Infectious Diseases and Molecular Medicine and Department of Medicine, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Burton, Rosie" sort="Burton, Rosie" uniqKey="Burton R" first="Rosie" last="Burton">Rosie Burton</name><affiliation><nlm:affiliation>c Southern African Medical Unit, Médecins Sans Frontières , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Meintjes, Graeme" sort="Meintjes, Graeme" uniqKey="Meintjes G" first="Graeme" last="Meintjes">Graeme Meintjes</name><affiliation><nlm:affiliation>b Clinical Infectious Diseases Research Initiative, Institute of Infectious Diseases and Molecular Medicine and Department of Medicine, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2017">2017</date><idno type="RBID">pubmed:28367748</idno><idno type="pmid">28367748</idno><idno type="doi">10.2989/16085906.2017.1285795</idno><idno type="wicri:Area/PubMed/Corpus">000767</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000767</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Conceptions of agency and constraint for HIV-positive patients and healthcare workers to support long-term engagement with antiretroviral therapy care in Khayelitsha, South Africa.</title><author><name sortKey="Stern, Erin" sort="Stern, Erin" uniqKey="Stern E" first="Erin" last="Stern">Erin Stern</name><affiliation><nlm:affiliation>a Division of Social and Behavioural Sciences, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Colvin, Christopher" sort="Colvin, Christopher" uniqKey="Colvin C" first="Christopher" last="Colvin">Christopher Colvin</name><affiliation><nlm:affiliation>a Division of Social and Behavioural Sciences, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Gxabagxaba, Nobom" sort="Gxabagxaba, Nobom" uniqKey="Gxabagxaba N" first="Nobom" last="Gxabagxaba">Nobom Gxabagxaba</name><affiliation><nlm:affiliation>a Division of Social and Behavioural Sciences, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Schutz, Charlotte" sort="Schutz, Charlotte" uniqKey="Schutz C" first="Charlotte" last="Schutz">Charlotte Schutz</name><affiliation><nlm:affiliation>b Clinical Infectious Diseases Research Initiative, Institute of Infectious Diseases and Molecular Medicine and Department of Medicine, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Burton, Rosie" sort="Burton, Rosie" uniqKey="Burton R" first="Rosie" last="Burton">Rosie Burton</name><affiliation><nlm:affiliation>c Southern African Medical Unit, Médecins Sans Frontières , Cape Town , South Africa.</nlm:affiliation></affiliation></author><author><name sortKey="Meintjes, Graeme" sort="Meintjes, Graeme" uniqKey="Meintjes G" first="Graeme" last="Meintjes">Graeme Meintjes</name><affiliation><nlm:affiliation>b Clinical Infectious Diseases Research Initiative, Institute of Infectious Diseases and Molecular Medicine and Department of Medicine, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</nlm:affiliation></affiliation></author></analytic><series><title level="j">African journal of AIDS research : AJAR</title><idno type="eISSN">1727-9445</idno><imprint><date when="2017" type="published">2017</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult</term><term>Antiretroviral Therapy, Highly Active</term><term>Female</term><term>HIV Infections (diagnosis)</term><term>HIV Infections (drug therapy)</term><term>HIV Infections (epidemiology)</term><term>Health Personnel (psychology)</term><term>Humans</term><term>Male</term><term>Medication 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Factors</term><term>Socioeconomic Factors</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">In the context of the optimism around antiretroviral therapy (ART) as prevention of HIV/AIDS, addressing the barriers to long-term ART adherence is critical. This is particularly important given the tendency to individualise or use a blame discourse when exploring why HIV-infected patients "fail" to adequately adhere to ART, and not sufficiently exploring contextual reasons for poor adherence that may require varying solutions. This study took place at three clinics and one hospital in Khayelitsha, South Africa, to document the contextual factors that challenged ART adherence in this community. Interviews were conducted with 20 HIV-infected patients who had defaulted on their ART and were subsequently admitted to Khayelitsha hospital for clinical complications, and 9 ART service providers including doctors, nurses and HIV counsellors. Interviews assessed the reasons patients defaulted on ART and explored ways this could be prevented. Data from both groups were analysed collectively using thematic analysis. While the interviews revealed a landscape of environmental risks threatening adherence to ART, all patients managed to overcome the identified barriers at some point in their treatment phase, indicating the fluidity of patients' needs and decision making. Patients reported that distrustful relationships with service providers could inhibit their understanding of ART and/or interrupt their follow-up at clinics. Patients described their rationale and agency underlying non-adherence, such as testing their bodies' physical limits without ART medication. The study speaks to the need to appreciate contextual social and structural barriers related to ART adherence, and how these are negotiated differently by specific sub-groups, to support an appropriate response. It is imperative to not solely emphasise loss to follow-up but also assess patients' subjective trajectory of their ART journey, decision making and agency with adhering to ART, their relations with healthcare workers, and how these dynamics are intertwined with broader constraints in health systems.</div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" Owner="NLM"><PMID Version="1">28367748</PMID><DateCreated><Year>2017</Year><Month>04</Month><Day>03</Day></DateCreated><DateCompleted><Year>2017</Year><Month>04</Month><Day>18</Day></DateCompleted><DateRevised><Year>2017</Year><Month>08</Month><Day>17</Day></DateRevised><Article PubModel="Print"><Journal><ISSN IssnType="Electronic">1727-9445</ISSN><JournalIssue CitedMedium="Internet"><Volume>16</Volume><Issue>1</Issue><PubDate><Year>2017</Year><Month>Mar</Month></PubDate></JournalIssue><Title>African journal of AIDS research : AJAR</Title><ISOAbbreviation>Afr J AIDS Res</ISOAbbreviation></Journal><ArticleTitle>Conceptions of agency and constraint for HIV-positive patients and healthcare workers to support long-term engagement with antiretroviral therapy care in Khayelitsha, South Africa.</ArticleTitle><Pagination><MedlinePgn>19-29</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.2989/16085906.2017.1285795</ELocationID><Abstract><AbstractText>In the context of the optimism around antiretroviral therapy (ART) as prevention of HIV/AIDS, addressing the barriers to long-term ART adherence is critical. This is particularly important given the tendency to individualise or use a blame discourse when exploring why HIV-infected patients "fail" to adequately adhere to ART, and not sufficiently exploring contextual reasons for poor adherence that may require varying solutions. This study took place at three clinics and one hospital in Khayelitsha, South Africa, to document the contextual factors that challenged ART adherence in this community. Interviews were conducted with 20 HIV-infected patients who had defaulted on their ART and were subsequently admitted to Khayelitsha hospital for clinical complications, and 9 ART service providers including doctors, nurses and HIV counsellors. Interviews assessed the reasons patients defaulted on ART and explored ways this could be prevented. Data from both groups were analysed collectively using thematic analysis. While the interviews revealed a landscape of environmental risks threatening adherence to ART, all patients managed to overcome the identified barriers at some point in their treatment phase, indicating the fluidity of patients' needs and decision making. Patients reported that distrustful relationships with service providers could inhibit their understanding of ART and/or interrupt their follow-up at clinics. Patients described their rationale and agency underlying non-adherence, such as testing their bodies' physical limits without ART medication. The study speaks to the need to appreciate contextual social and structural barriers related to ART adherence, and how these are negotiated differently by specific sub-groups, to support an appropriate response. It is imperative to not solely emphasise loss to follow-up but also assess patients' subjective trajectory of their ART journey, decision making and agency with adhering to ART, their relations with healthcare workers, and how these dynamics are intertwined with broader constraints in health systems.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Stern</LastName><ForeName>Erin</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>a Division of Social and Behavioural Sciences, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Colvin</LastName><ForeName>Christopher</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>a Division of Social and Behavioural Sciences, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Gxabagxaba</LastName><ForeName>Nobom</ForeName><Initials>N</Initials><AffiliationInfo><Affiliation>a Division of Social and Behavioural Sciences, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Schutz</LastName><ForeName>Charlotte</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>b Clinical Infectious Diseases Research Initiative, Institute of Infectious Diseases and Molecular Medicine and Department of Medicine, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>d Department of Medicine, Faculty of Health Sciences , University of Cape Town , Cape Town , South Africa.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Burton</LastName><ForeName>Rosie</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>c Southern African Medical Unit, Médecins Sans Frontières , Cape Town , South Africa.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>d Department of Medicine, Faculty of Health Sciences , University of Cape Town , Cape Town , South Africa.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Meintjes</LastName><ForeName>Graeme</ForeName><Initials>G</Initials><AffiliationInfo><Affiliation>b Clinical Infectious Diseases Research Initiative, Institute of Infectious Diseases and Molecular Medicine and Department of Medicine, School of Public Health and Family Medicine , University of Cape Town , Cape Town , South Africa.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><GrantList CompleteYN="Y"><Grant><Agency>Wellcome Trust</Agency><Country>United Kingdom</Country></Grant><Grant><GrantID>R24 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