Burden and quality of life in caregivers of cancer patients at the beginning of palliative care. CUIDPALCOSTASOL Study

Abstract

Objectives: To describe the quality of life and caregiver burden of family caregivers of cancer patients at the beginning of palliative care.

Method: Cross-sectional descriptive study in the CUIDPACOSTASOL cohort of family caregivers of palliative phase cancer patients, included between February 2017 and December 2019 from health centres of the Costa del Sol and Malaga-Valle del Guadalhorce Primary Care District, and Cudeca Foundation. Sociodemographic data on caregivers and patients, specific questionnaires related to family caregiver burden as well as satisfaction (Zarit and FAMCARE), quality of life (SF-36) and nursing diagnoses (NANDA), and patient characteristics (PPI, PPSv2) were collected.

Results: 174 family caregivers were included, 86.8% were women with a mean age of 57 years. 60.6% perceived their health as good, and the mean score on the Zarit scale was 13.0. The most repeated nursing diagnosis (NANDA) was «Risk for caregiver role strain» (41.8%). The quality-of-life dimensions with the highest scores were «Physical function» (80.5), and «Physical role» (67.2). Of the people receiving care, 62.6% were men with a mean age of 73 years and required care for an average of 19 h per day. The mean score on the Palliative Performance Scale, PPSv2, was 44.9%, and 3.9% on the PPI Palliative Prognostic Index.

Conclusions: Family caregivers in this study had moderate burden, high risk for caregiver role strain, and acceptable perceived health and quality of life. This is probably because they were at the beginning of palliative care.

Keywords: Calidad de vida relacionada con la salud; Caregiver burden; Cuidadoras informales; Cuidados paliativos; Estrés psicológico; Health-related quality of life; Informal caregivers; Palliative care; Psychological stress; Sobrecarga de las cuidadoras.