Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

Janneke Van Roij,Lonneke Van De Poll-Franse,Natasja Raijmakers,Linda Brom,Dirkje Sommeijer

doi:10.1007/s00520-021-06365-9

Abstract

PurposeRelatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden.MethodsThis study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden.ResultsMost of the 746 relatives were the patient’s partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR = .87) and were less resilient (OR = .76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR = .96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR = .39).ConclusionA significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation.Trial registration numberNTR6584 (date of registration: 30 June 2017)

Highlights

The responsibility of caring for patients with a life-threatening illness such as advanced cancer is increasingly placed on their relatives [1]
Relatives with a high caregiver burden more often reported to be an informal caregiver of the patient (68%), compared to relatives with a medium (61%) or low (49%) caregiver burden (p = 0.001)
This study shows that a significant part of relatives of patients with advanced cancer experience a high caregiver burden

Summary

Introduction

The responsibility of caring for patients with a life-threatening illness such as advanced cancer is increasingly placed on their relatives [1]. Relatives of patients with advanced cancer often experience that caring for their loved one is fulfilling but may carry a high caregiving burden. Informal caregivers of patients with advanced cancer typically provide 18 to 33 h a week care for their loved one [3, 4]. Informal caregivers of patients with advanced cancer often experience a low quality of life [3, 4, 6,7,8,9,10]. For these informal caregivers, high rates of depression and anxiety are found [3, 4] as well as feelings of social isolation [9, 11] and loss of self-identity [10]

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