Browsing by Subject "Community participation"

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    Open Access
    Community participation and the right to health for people with disability: a qualitative study into Health Committees' understanding and practise of their governance role in relation to disability
    (2015) Abrahams, Theodore William John; Haricharan, Hanne Jensen; London, Leslie
    BACKGROUND: People with disabilities encounter major barriers that prevent them realising their right to health in South Africa. Health committees are legislated structures for community participation in health at a local level. This study investigated how health committee members understand and practise their role in community participation and how this advances the right to health for persons with disability. METHODS: A qualitative study was conducted with three health committees in the Cape Town Metropole in the Western Cape province of South Africa purposively selected for the study. Three facility managers and eight health committee members took part in focus group discussions and semi-structured interviews, supplemented by participant observations of committee meetings. Additionally, semi-structured interviews were conducted with 2 disability activists. These methods were used to gain a rich understanding of health committees’ roles and practises in relation to persons with disabilities. Thematic analysis was used to analyse the data. RESULTS: The main research findings were: (i) health committees did not prioritise disability on their respective agendas; (ii) persons with disabilities were not adequately represented on health committees; (iii) health committees exhibited poor understanding of disability barriers relating to health; (iv) lack of egalitarian values led to persons with disabilities not trusting the health committee, and distrust amongst health committee members; lastly (v) health committees augment health facility operations instead of fulfilling their governance and oversight function. These factors may have contributed to health committees not helping to advance the right to health for persons with disabilities. CONCLUSIONS: Health committees should include mandated representation of persons with disabilities, whilst addressing marginalisation directed toward persons with disabilities on committees. Training of health committees, as well as networking with disabled organisations, could help improve their limited understanding of disability. Health committees should consider addressing disability a human rights issue, which critically involves community mobilisation, raising awareness around issues of disability and promoting agency amongst persons with disabilities to claim their rights.
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    “I don’t know when he will be back”: life-changing events challenge the community ART Group model– a qualitative research study, Tete, Mozambique
    (2021-11-04) Tarquino, Ivan A P; Venables, Emilie; Simone, Rajá R; de Amaral Fidelis, Jose M; Decroo, Tom
    Background Since 2008 in Mozambique, patients stable on antiretroviral therapy (ART) can join Community ART Groups (CAG), peer groups in which members are involved in adherence support and community ART delivery. More than 10 years after the implementation of the first CAGs, we study how changes in circumstance and daily life events of CAG members have affected the CAG dynamic. Methods A qualitative study using individual in-depth interviews (27) and focus group discussions (8) with CAG members and health care providers was carried out in Tete province, rural Mozambique. Purposive sampling was used to select participants. Data were transcribed and translated, and manual thematic analysis carried out to identify codes, which were then categorized in sub-themes and themes. Results Data were collected from 61 CAG members and 18 health-care providers in 2017. The CAG dynamic was affected by life events and changing circumstances including a loss of geographical proximity or a change in social relationships. Family CAGs facilitated reporting and ART distribution, but conflict between CAG members meant some CAGs ceased to function. In some CAGs, the dynamic changed as pill counts were not carried out, members met less frequently or stopped meeting entirely. Some members did not collect ART at the facility when it was their turn, and others stopped taking ART completely. Health care providers were reported to push people living with HIV to join CAGs, instead of allowing voluntary participation. Some CAGs responded to adherence challenges by strengthening peer support through counselling and observed pill intake. Health-care providers agreed that strengthening CAG rules and membership criteria could help to overcome the identified problems. Conclusions Changing life circumstances, changes in relationships and a lack of participation by CAG members altered the CAG dynamic, which sometimes affected adherence. Some CAGs responded to challenges by intensifying peer support, including to those diagnosed with virological failure. To ensure flexible implementation and modification of CAGs to the inevitable changes in life circumstances of its members, feedback mechanisms should be implemented between CAG members and the health-care providers.