ArticlePalliative medicine2021
The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study.
Article in Palliative medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers, 2 of them syntheses that pooled it.
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Who cites it
42 citing papers in PubMed, 2 syntheses or guidelines pooled it, 77 citations in OpenAlex.
- The barriers and facilitators family caregivers experience when participating in resource-limited hospital care: a qualitative systematic review.BMJ global health · 2024Pooled it
- Pooled it
- Exploring routine palliative care delivery to inform tailored digitalization approaches - a qualitative interview study.BMC palliative care · 2026Article
- Financial hardship in cancer family caregivers: a scoping review.BMC palliative care · 2026Article
- Unclear boundaries: Family caregivers' invisible role in home-based palliative care in Norway: an exploratory analysis of secondary data from two previous studies.International journal of nursing studies advances · 2026Article
- Illness Representations and Quality of Life Among Informal Cancer Caregivers: Examining the Role of Social Support.Healthcare (Basel, Switzerland) · 2026Article
- Family caregiver experiences in terminal cancer: a qualitative study in palliative care.BMC palliative care · 2026Article
- Social support and psychological distress among family caregivers of palliative patients at two rural hospitals in Malawi: a cross-sectional study.BMC palliative care · 2025Article
- Comprehensive care needs among informal cancer caregivers of patients with advanced cancer in palliative care: a cross-sectional study.Scientific reports · 2025Article
- Caring for carers of people with advanced cancer at hospital discharge (CARENET): A single-arm open label feasibility trial.Palliative & supportive care · 2025Article
- Article
- Valuation of informal care for the old-aged with disabilities in China-a discrete choice experiment approach.Health economics review · 2025Article
- Impact of Interventions From a Secondary Home-Based Palliative Care Unit on Caregiver Burden in Kerala, India.Cureus · 2025Article
- Examination of the relationship between the empathic tendencies and sleep quality of caregivers of cancer patients.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- What are family caregivers' experiences of coordinating end-of-life care at home? A narrative review.Palliative & supportive care · 2025Review
- Care mobilities and associated contexts of hospital-based informal caregiving in Nigeria: Towards an explanatory framework.PloS one · 2025Article
- Patients' and caregivers' experiences of familial and social support in resource-poor settings: A systematically constructed review and meta-synthesis.Palliative care and social practice · 2025Review
- Lived experiences of informal caregivers of adolescents with bipolar disorder at Masaka regional referral hospital.PLOS mental health · 2025Article
- Ambivalent and heavy burdened wanderers on a road less travelled: a meta-ethnography on end-of-life care experiences among family caregivers in rural areas.BMC health services research · 2024Article
- Comprehensive needs assessment tool for informal cancer caregivers (CNAT-ICs): Instrument development and cross-sectional validation study.International journal of nursing studies advances · 2024Article
Corrections and comments
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Authors and funding
10 authors at 6 institutions in 4 countries.
Funding
Abstract
backgroundCancer 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.
aimWe 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.
designSecondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. SETTING/
participantsInterview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries.
resultsA 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.
conclusionsThe 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.
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