Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews
BMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c2581 (Published 10 June 2010) Cite this as: BMJ 2010;340:c2581
- Scott A Murray, St Columba’s Hospice professor of primary palliative care,
- Marilyn Kendall, senior research fellow,
- Kirsty Boyd, honorary clinical senior lecturer,
- Liz Grant, senior lecturer,
- Gill Highet, research fellow,
- Aziz Sheikh, professor of primary care research and development
- 1Primary Palliative Care Research Group, Centre for Population Health Sciences: General Practice Section, University of Edinburgh, Edinburgh EH8 9DX
- Correspondence to: S A Murray scott.murray{at}ed.ac.uk
- Accepted 9 March 2010
Abstract
Objective To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death.
Design Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement.
Setting South east Scotland.
Participants 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers).
Results Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the “Why us?” response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage.
Conclusions Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.
Footnotes
We thank the participants and the researchers who worked on these studies and the reviewers of an earlier version of this manuscript.
Contributors: SAM, MK, and AS conceived the paper. All the authors wrote the paper and approved the final draft. SAM is the guarantor.
Funding: The Chief Scientist’s Office of the Scottish government funded the studies.
Competing interests: All authors have completed the unified competing interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare (1) no financial support for the submitted work from anyone other than their employer; (2) no financial relationships with commercial entities that might have an interest in the submitted work; (3) no spouses, partners, or children with relationships with commercial entities that might have an interest in the submitted work; and (4) no non-financial interests that may be relevant to the submitted work.
Ethical approval: This was obtained from the south east of Scotland research ethics committee before each of the three studies from which we analysed data.
Data sharing: No additional data available.
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.