ArticleBMC palliative care2013
'My dreams are shuttered down and it hurts lots'-a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda.
Article in BMC palliative care, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.
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Who cites it
23 citing papers in PubMed, 1 synthesis or guideline pooled it.
- What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence.Palliative medicine · 2021Pooled it
- What are the symptoms and concerns of young adults living with life-limiting conditions and how well are they captured by patient reported outcome measures? A mixed-methods systematic review and framework synthesis.Palliative medicine · 2026Review
- Observational
- Spiritual suffering in palliative care: a concept analysis.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Review
- Barriers and facilitators to the implementation of palliative care services at five tertiary hospitals in nigeria: a qualitative formative study.BMC health services research · 2025Article
- Exploring palliative care needs of advanced AIDS patients in China: insights from a descriptive phenomenological study.BMC palliative care · 2025Article
- Expanding the food environment framework to include family dynamics: A systematic synthesis of qualitative evidence using HIV as a case study.Global food security · 2024Review
- Experiences of people living with HIV in low- and middle-income countries and their perspectives in self-management: a meta-synthesis.AIDS research and therapy · 2024Review
- Post-operative pain and associated factors after cesarean section at Hawassa University Comprehensive Specialized Hospital, Hawassa, Ethiopia: A cross-sectional study.Annals of medicine and surgery (2012) · 2022Article
- A qualitative study of the experience and impact of neuropathic pain in people living with HIV.Pain · 2020Article
- Change in multidimensional problems and quality of life over three months after HIV diagnosis: a multicentre longitudinal study in Kenya and Uganda.BMC infectious diseases · 2019Article
- Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review.The Milbank quarterly · 2019Review
- Does the public antiretroviral treatment programme meet patients' needs? A study at four hospitals in eThekwini, KwaZulu-Natal, South Africa.African journal of primary health care & family medicine · 2019Article
- Assessment and Management of Postoperative Pain among Nurses at a Resource-Constraint Teaching Hospital in Ghana.Nursing research and practice · 2019Article
- Patient-reported barriers and facilitators to antiretroviral adherence in sub-Saharan Africa.AIDS (London, England) · 2017Review
- Gender Differences and Psychosocial Factors Associated with Quality of Life Among ART Initiators in Oromia, Ethiopia.AIDS and behavior · 2016Article
- A Pilot Study of Palliative Care Provider Self-competence and Priorities for Education in Kenya.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2015Article
- Article
- Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study.BMC infectious diseases · 2014Observational
- Postoperative pain management among surgically treated patients in an Ethiopian hospital.PloS one · 2014Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundDespite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services.
methodsLocal researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically.
results189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful.
conclusionsThe findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain' in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids.
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