The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study

TY - JOUR

T1 - The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer

T2 - A multi-country qualitative study

AU - Adejoh, Samuel Ojima

AU - Boele, Florien

AU - Akeju, David

AU - Dandadzi, Adlight

AU - Nabirye, Elizabeth

AU - Namisango, Eve

AU - Namukwaya, Elizabeth

AU - Ebenso, Bassey

AU - Nkhoma, Kennedy

AU - Allsop, Matthew J.

PY - 2020

Y1 - 2020

N2 - 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.

AB - 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.

KW - Africa South of the Sahara

KW - caregivers

KW - neoplasms

KW - Palliative care

KW - qualitative research

UR - http://www.scopus.com/inward/record.url?scp=85097992930&partnerID=8YFLogxK

U2 - 10.1177/0269216320974925

DO - 10.1177/0269216320974925

M3 - Article

AN - SCOPUS:85097992930

SN - 0269-2163

JO - Palliative medicine

JF - Palliative medicine

ER -