Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group study.

Abstract

Objectives: In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. This is a particular issue in South-West England, where there is an ageing population, historical lack of research, and particular challenges due to its rural and coastal location. The aim of this study was to provide a holistic view of patient and family experiences of care toward the end-of-life in this location and to collaboratively identify the challenges they face.

Methods: Six qualitative focus groups were held with people who were toward the end of their life, family/carers, and people who were bereaved. Participants were recruited via hospice networks. Most focus groups were face-to-face, and all were facilitated by two researchers.

Results: A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed.

Significance of results: This study provides a core first step in developing partnership working with members of the public, which can be built upon to develop future research agendas. This work has identified areas for improvement, so that ultimately, end-of-life experience for the individual, their carers, and families can be improved.