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The Caregiver Role in Palliative Care: A Systematic Review of the Literature

Carla Reigada, Jose´ Luis Pais-Ribeiro, Anna Novellas, Miguel Tavares and Edna Gonc¸alves

Abstract

Patients nearing the end of their life are daily confronted with complex decisions. Is essential to ensure the continuity of care outside of the health institutions and, in this sense, a presence of a family member at home able to provide multilevel care has become an important goal/resource for patients and health care teams.

Aim: To analyse the literature about roles and tasks of family caregivers of patients in palliative care (PC). Design: A systematic review of the literature published in English, Portuguese and Spanish between 2006 and 2014 was undertaken, in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.

Data sources: PubMed, PsycInfo, Scopus and SciELO were searched to find studies on the family caregiver's role in palliative care. Results: A total of 13 studies were included and described seven major caregiver roles: to be a caregiver, to be a welfare enhancer, to carry out many tasks, to act as a PC facilitator and be responsible for the continuity of care, to be an apprentice, to be a minimizer/manager of the suffering and to be a decider at the end-of-life.

Conclusions: Family caregivers are still the greatest support of patients in end-of-life especially when they wish to be cared for at home. Carers can be considered the core structure for the continuity of care of these patients. Setting out the various carer tasks and roles will contribute for the  "family caregiver" agreement concept as well as, will recognize their value as a person who needs to be cared too.