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

BMC Palliative Care

Research Article

Bart PM Schweitzer¹  Bregje D Onwuteaka-Philipsen²  H Roeline W Pasman²  Maria C De Korte-Verhoef²  Luc Deliens³  Anneke L Francke⁴ 

[1] Department of General Practice, EMGO Institute for Health and Care Research, VU University medical center, Amsterdam, The Netherlands;Department of Public and Occupational Health & Expertise Center Palliative Care VUmc, EMGO Institute for Health and Care Research, VU University medical center (VUmc), P.O. Box 7057, 1007, MB Amsterdam, The Netherlands;Department of Public and Occupational Health & Expertise Center Palliative Care VUmc, EMGO Institute for Health and Care Research, VU University medical center (VUmc), P.O. Box 7057, 1007, MB Amsterdam, The Netherlands;Ghent University & Vrije Universiteit Brussel, End-of-life Care Research Group, Brussels, Belgium;Department of Public and Occupational Health & Expertise Center Palliative Care VUmc, EMGO Institute for Health and Care Research, VU University medical center (VUmc), P.O. Box 7057, 1007, MB Amsterdam, The Netherlands;NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands;

关键词: Palliative care;    General practitioner;    Family carer;    Burden;    Hospitalisation;    Mixed method;   

DOI  :  10.1186/1472-684X-13-16

 received in 2013-10-24, accepted in 2014-03-25,  发布年份 2014

来源: Springer

【 摘 要 】

BackgroundSince 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.MethodsA 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.ResultsThe 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.ConclusionsThe 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.

【 授权许可】

CC BY   
© De Korte-Verhoef et al.; licensee BioMed Central Ltd. 2014