Exploring perceived barriers to palliative and end of life care provision in South-West England: bringing together the perspectives of professionals, patients, and families

Gary Hodge*, Gina Kallis, Tomasina Oh, Hannah Wheat, Susie Pearce

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

INTRODUCTION: Palliative and End of Life care (PEoLC) in the United Kingdom (UK) is increasingly being reported as inadequate. This is occurring amidst a wider backdrop of health and social care systems facing unprecedented pressure, particularly as they recover from the long-term impact of the COVID-19 pandemic. This study aimed to explore the barriers to PEoLC faced by those providing and receiving care in South-West England (UK). This region of the UK brings its own set of unique challenges due to its rural and coastal location, an aging population, and a historical lack of research.

METHODS: An exploratory study was conducted which involved patients, families, and professionals who were providing and receiving PEoLC. A total of 13 qualitative focus groups were held with a total of 63 participants; 45 were health and care professionals and 18 were people toward the end of their life, family/carers and people who were bereaved.

RESULTS: A range of barriers were identified for those providing and receiving PEoLC services. These were a lack of specialist palliative and EoL care resources (particularly in out-of-hours care); poor communication, collaboration and co-ordination across providers; inequalities in the access and provision of care; the impact of the COVID-19 pandemic; and a reluctance to have conversations about death and dying.

CONCLUSION: This study brings together the voices of patients, family, and professionals from different settings in a geographical area of the UK. Understanding their experiences and perceived barriers to care is key to being able to develop and transform care. Ultimately, there is a need for a collaborative and co-ordinated approach across both practice and research, working toward what is important to those providing, and most importantly, those receiving care at the end of their lives.

Original languageEnglish
Article number1488688
Pages (from-to)1488688
JournalFrontiers in Sociology
Volume9
DOIs
Publication statusPublished - 20 Jan 2025

ASJC Scopus subject areas

  • General Social Sciences

Keywords

  • end of life care
  • family carers
  • hospice care
  • palliative care
  • patient
  • professionals

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