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.