Samuel Ojima Adejoh1, Florien Boele2,3, David Akeju4, Adlight Dandadzi5, Elizabeth Nabirye6, Eve Namisango7, Elizabeth Namukwaya6, Bassey Ebenso8, Kennedy Nkhoma9, Matthew J Allsop10. 1. Department of Social Work, University of Lagos, Lagos, Nigeria. 2. Academic Unit of Health Economics, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK. 3. Patient-Centred Outcomes Group, Leeds Institute of Medical Research at St James's, St James's University Hospital, Leeds, UK. 4. Department of Sociology, University of Lagos, Lagos, Nigeria. 5. Clinical Trials Research Centre, College of Health Sciences, University of Zimbabwe, Harare, Zimbabwe. 6. Department of Internal Medicine, Makerere University, Kampala, Uganda. 7. African Palliative Care Association, Kampala, Uganda. 8. Nuffield Centre for International Health and Development, University of Leeds, Leeds, UK. 9. Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, King's College London, London, UK. 10. Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Abstract
BACKGROUND: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. AIM: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. DESIGN: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. SETTING/PARTICIPANTS: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. RESULTS: A total of 48 transcripts were analyzed. Mean age was 37 (range 19-75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. CONCLUSIONS: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.
BACKGROUND:Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. AIM: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. DESIGN: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. SETTING/PARTICIPANTS: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. RESULTS: A total of 48 transcripts were analyzed. Mean age was 37 (range 19-75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. CONCLUSIONS: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.
Entities:
Keywords:
Africa South of the Sahara; Palliative care; caregivers; neoplasms; qualitative research
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