Perspectives in preparedness of family caregivers of patients with cancer providing end-of-life care in the home: A narrative review of qualitative studies

Abstract

Abstract Background Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being. Objectives This study sought to review existing qualitative literature on family carers’ experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role. Methods A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: “Cancer,” “Caregiver,” “End of Life Care,” “Home,” and “Qualitative.” Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research. Results Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: “motivations for providing care,” “interactions with health-care professionals,” and “changes during the caring process.” Significance of results Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.