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  • Factors associated with carer psychological and physical health during end-of-life caregiving: an observational analysis of a population-based post-bereavement survey of carers of people with cancer

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Palliative care
Original research
Factors associated with carer psychological and physical health during end-of-life caregiving: an observational analysis of a population-based post-bereavement survey of carers of people with cancer
  1. Gunn Grande1,
  2. Christine Rowland1,
  3. Sarah Cotterill2,
  4. Evridiki Batistatou2,
  5. Barbara Hanratty3,4
  1. 1Division of Nursing, Midwifery & Social Work, School of Health Sciences, Faculty of Biology Medicine and Health, The University of Manchester, Manchester, UK
  2. 2Centre for Biostatistics, School of Health Sciences, Faculty of Biology Medicine and Health, The University of Manchester, Manchester, UK
  3. 3Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK
  4. 4NIHR Applied Research Collaboration (ARC) North East and North Cumbria, Newcastle Upon Tyne, UK
  1. Correspondence to Professor Gunn Grande; gunn.grande{at}manchester.ac.uk

Abstract

Objective Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers’ health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample.

Design National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer.

Setting and participants Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%).

Outcome measures Carers’ mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS).

Methods Survey questions to measure potential variables associated with carer health were based on past research and covered patients’ symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables’ relationship with outcomes.

Results Patients’ psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients’ psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health.

Conclusions Improvements in carers’ health overall may be made by focusing on potential impacts of patients’ psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers.

  • mental health
  • public health
  • palliative care

Data availability statement

No data are available. Data are only available to researchers approved for the project by the Office of National Statistics.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2020-047275

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    Data availability statement

    No data are available. Data are only available to researchers approved for the project by the Office of National Statistics.

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    Footnotes

    • Twitter @gunn_grande, @c_a_rowland, @cotterillsarah1

    • Contributors GG, BH and CR contributed to the study design. CR contributed to acquisition of data. GG, CR, EB and SC contributed to the analysis and interpretation of data. GG drafted the article and CR, BH, EB and SC revised it critically for important intellectual content. All authors approved the version to be published.

    • Funding The study was funded by Dimbleby Cancer Care. Award/grant number is not applicable. It received support from the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Greater Manchester. The views expressed in this article are those of the authors and not necessarily those of Dimbleby Cancer Care, the NHS, NIHR or the Department of Health and Social Care.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.