Self-care and end of life care--patients' and carers' experience a qualitative study utilising serial triangulated interviews.

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.

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018.

OBJECTIVES: To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision. DESIGN: A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results. DATA SOURCES: Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus. ELIGIBILITY CRITERIA: Primary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018. PARTICIPANTS: Prisoners, prisoners' families, prison healthcare staff and other prison staff. DATA EXTRACTION/SYNTHESIS: Data extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions. QUALITY APPRAISAL: Two researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal. RESULTS: 23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons. CONCLUSIONS: The key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified. PROSPERO REGISTRATION NUMBER: PROSPERO ID: CRD42019118737. Registered January 2019.