Abstract
Purpose
This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. Research questions: (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care?
Methods
This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7.
Results
Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants.
Conclusions
Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.
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Acknowledgments
This study was conducted as part of a postdoctoral research fellowship funded by Medical Research Scotland. Medical Research Scotland was not involved in the preparation of the article. The author submitted a midway, final report and post-award report to the funders and presented the findings at Medical Research Scotland open days; however, the funders were not involved in study design, data collection, analysis or interpretation of data. We would like to acknowledge the help and support of the research steering group, particularly the patient contribution as well as the patient advisory groups at three hospices, who helped shape the ideas for the study and commented on the findings.
Conflict of interest
There is no conflict of interest with the organisation that sponsored the research. The authors have full control of the primary data and we agree to allow the journal to review our data if requested.
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Johnston, B.M., Milligan, S., Foster, C. et al. Self-care and end of life care—patients’ and carers’ experience a qualitative study utilising serial triangulated interviews. Support Care Cancer 20, 1619–1627 (2012). https://doi.org/10.1007/s00520-011-1252-3
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DOI: https://doi.org/10.1007/s00520-011-1252-3