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BMC Palliative Care
Published in: BMC Palliative Care 1/2014

Open Access 01-12-2014 | Research article

Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs

Authors: Maria C De Korte-Verhoef, H Roeline W Pasman, Bart PM Schweitzer, Anneke L Francke, Bregje D Onwuteaka-Philipsen, Luc Deliens

Published in: BMC Palliative Care | Issue 1/2014

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Abstract

Background

Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients’ hospitalisation. This study aimed to explore family carers’ burden in the final three months of the patient’s life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation.

Methods

A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted.

Results

The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.

Conclusions

The different overall assessment of family carers’ burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers’ personal needs.
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Metadata
Title
Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs
Authors
Maria C De Korte-Verhoef
H Roeline W Pasman
Bart PM Schweitzer
Anneke L Francke
Bregje D Onwuteaka-Philipsen
Luc Deliens
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2014
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/1472-684X-13-16

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