A169
Self care and advanced cancer- the patients experience
Bridget Johnston, Nora Kearney
University of Stirling, Stirling, UK
Background
Patient centred care is fundamental to the work of palliative care clinicians. However, despite this, there is a paucity of palliative care research that is patient focused and explores patients’ experiences, particularly in relation to self care.
Aim
To understand patient and carer experiences of end of life care and utilise this experience to enhance the delivery of palliative care services
Method
A participatory action research model was used, allowing collaboration and participation of people affected by advanced cancer. User involvement was key to this study. The study was a 2 year post-doctoral, 3 phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland. Patient experience phase (phase 2 reported here). Data were collected from 20 patients, their carer and key health professional, via serial, usually two, unstructured in depth interviews. Data were analysed using framework analysis (Ritchie and Spencer 1994, 2003).
Results
71 Interviews were conducted in phase 2 of the study. Maintaining normality, carer support and preparing for death were the most important areas as far as their self care was concerned for the patients and carers and key health professionals in the study.
Conclusion
The overarching framework was dignity. How these results compare to previous work on dignity and future research ideas will be presented. Self care is different in advanced cancer to self care issues in chronic illness. People receiving end of life care, want to, and are able to engage in in-depth research.
