“The Adopted Children of ART”: Expert Clients and Role Tensions in ART Provision in Uganda

Kyakuwa, Margaret; Hardon, Anita; Goldstein, Zoë

doi:10.1080/01459740.2011.603399

Cited by 38 publications

(21 citation statements)

References 10 publications

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“…Expert clients are HIV+ patients on long-term ART who assist the health-care workers mainly with adherence support of fellow patients. They play a vital role in bridging the gap caused by a limited health-care workforce but more important are able to reach out to patients at a more personal level based on their own experiences with the disease and treatment [28,29]. They provide counseling, motivate fellow patients by sharing their own personal experiences, conduct active tracing of patients lost-to-follow-up, offer adherence support and sometimes also assist health-care workers in minor clinical work such as in triage, patient flow and translation [28,29].…”

Section: Methodsmentioning

confidence: 99%

Long-Term Antiretroviral Treatment Adherence in HIV-Infected Adolescents and Adults in Uganda: A Qualitative Study

Inzaule¹,

Hamers²,

Kityo³

et al. 2016

PLoS ONE

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BackgroundLong-term success of HIV antiretroviral therapy requires near-perfect adherence, maintained throughout one’s lifetime. However, perceptions towards ART and patterns of adherence may change during the life course. We assessed challenges to long-term adherence in adolescents and adults in three regional HIV treatment centers in Uganda.MethodsWe conducted 24 in-depth interviews and 2 focus group discussions with a total of 33 health-care providers and expert clients (HIV patients on long-term ART who assist with adherence support of fellow patients). Interview topics included experiences with patients on long-term treatment with either declining adherence or persistent poor adherence. Transcribed texts were coded and analyzed based on the social-ecological framework highlighting differences and commonalities between adolescents and adults.ResultsThe overarching themes in adolescents were unstructured treatment holidays, delays in disclosure of HIV status by caretakers, stigma, which was mainly experienced in boarding schools, and diminishing or lack of clinical support. In particular, there was minimal support for early and gradual disclosure for caretakers to the infected children, diminishing clinical support for young adults during transition to adult-based care and declining peer-to-peer support group activities. The predominating theme in adults was challenges with treatment access among temporary economic migrants. Common themes to adults and adolescents were challenges with disclosure in intimate relationships, treatment related factors including side effects, supply of single tablets in place of fixed-dose combined drugs, supply of drug brands with unfavorable taste and missed opportunities for counseling due to shortage of staff.ConclusionAdherence counseling and support should be adapted differently for adolescents and adults and to the emerging life course challenges in long-term treated patients. Programs should also address constraints experienced by temporary economic migrants to ensure continuity of treatment within the host country.

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Section: Methodsmentioning

confidence: 99%

Long-Term Antiretroviral Treatment Adherence in HIV-Infected Adolescents and Adults in Uganda: A Qualitative Study

Inzaule¹,

Hamers²,

Kityo³

et al. 2016

PLoS ONE

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“…Additional issues related to the implementation of task shifting include institutional and professional cadre resistance and maintenance of staff motivation over time [13]. In Uganda, for example, nurses felt that expert patients were a threat to their professional status due to competing training opportunities and development of close relationships between patients and expert patients resulting from expert patients’ openness about their experiences of living with HIV [14]. …”

Section: Introductionmentioning

confidence: 99%

Shifting human resources for health in the context of ART provision: qualitative and quantitative findings from the Lablite baseline study

Nkhata

Muzambi

Ford

et al. 2016

BMC Health Serv Res

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BackgroundLablite is an implementation project supporting and studying decentralized antiretroviral therapy (ART) rollout to rural communities in Malawi, Uganda and Zimbabwe. Task shifting is one of the strategies to deal with shortage of health care workers (HCWs) in ART provision. Evaluating Human Resources for Health (HRH) optimization is essential for ensuring access to ART. The Lablite project started with a baseline survey whose aim was to describe and compare national and intercountry delivery of ART services including training, use of laboratories and clinical care.MethodsA cross-sectional survey was conducted between October 2011 and August 2012 in a sample of 81 health facilities representing different regions, facility levels and experience of ART provision in Malawi, Uganda and Zimbabwe. Using a questionnaire, data were collected on facility characteristics, human resources and service provision. Thirty three (33) focus group discussions were conducted with HCWs in a subset of facilities in Malawi and Zimbabwe.ResultsThe survey results showed that in Malawi and Uganda, primary care facilities were run by non-physician clinical officers/medical assistants while in Zimbabwe, they were run by nurses/midwives. Across the three countries, turnover of staff was high especially among nurses. Between 10 and 20% of the facilities had at least one clinical officer/medical assistant leave in the 3 months prior to the study. Qualitative results show that HCWs in ART and non-ART facilities perceived a shortage of staff for all services, even prior to the introduction of ART provision. HCWs perceived the introduction of ART as having increased workload. In Malawi, the number of people on ART and hence the workload for HCWs has further increased following the introduction of Option B+ (ART initiation and life-long treatment for HIV positive pregnant and lactating women), resulting in extended working times and concerns that the quality of services have been affected. For some HCWs, perceived low salaries, extended working schedules, lack of training opportunities and inadequate infrastructure for service provision were linked to low job satisfaction and motivation.ConclusionsART has been decentralized to lower level facilities in the context of an ongoing HRH crisis and staff shortage, which may compromise the provision of high-quality ART services. Task shifting interventions need adequate resources, relevant training opportunities, and innovative strategies to optimize the operationalization of new WHO treatment guidelines which continue to expand the number of people eligible for ART.

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“…At both clinics, patients received both individual counseling and group education sessions, run by nurses, counselors, or expert clients (patients living with HIV who have publicly disclosed their status and conduct HIV community outreach, frequently as unpaid clinic volunteers) (Kyakuwa, Hardon, and Goldstein 2012). Group sessions were repeated each visit, after nurses triaged those requiring individual counseling.…”

Section: Resultsmentioning

confidence: 99%

“…They receive a range of supportive services in exchange for patients submitting to monitoring to ensure they are following the “rules” of ART and becoming “clients” of the healthcare system. The terms “client” and “patient” are generally used interchangeably in the Ugandan clinical context (Kyakuwa, Hardon, and Goldstein 2012). …”

Section: Introductionmentioning

confidence: 99%

Routines, Hope, and Antiretroviral Treatment among Men and Women in Uganda

et al. 2016

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Antiretroviral treatment programs, despite biomedical emphases, require social understanding and transformations to be successful. In this paper, we draw from a qualitative study of HIV treatment seeking to examine the drug taking routines and health-related subjectivities of men and women on antiretroviral treatment (ART) at two sites in Uganda. We show that while not all participants in ART programs understand clinical protocols in biomedical terms, they adopt treatment taking strategies to integrate medication into daily practices and social spaces. In turn, these embedded practices and understandings, shape long term hopes and fears for living with HIV, including the possibility of a cure. More significant than new forms of citizenship or sociality, the authors suggest that quotidian dimensions of treatment normalization shape the long term experience of medication and outlook for the future.

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“The Adopted Children of ART”: Expert Clients and Role Tensions in ART Provision in Uganda

Cited by 38 publications

References 10 publications

Long-Term Antiretroviral Treatment Adherence in HIV-Infected Adolescents and Adults in Uganda: A Qualitative Study

Long-Term Antiretroviral Treatment Adherence in HIV-Infected Adolescents and Adults in Uganda: A Qualitative Study

Shifting human resources for health in the context of ART provision: qualitative and quantitative findings from the Lablite baseline study

Routines, Hope, and Antiretroviral Treatment among Men and Women in Uganda

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