Research project - ACCESSA

Access to palliative care by ethnic minorities, with a focus on South Asian communities

Palliative care provides patients with pain and symptom relief, and getting access to palliative care is often associated with good quality end of life care.

Studies, however, show that those from ethnic minority groups may not get the same access to these services.

As there is little research focused on South Asians communities in the UK, this project looked to address this by exploring ways to improve access to palliative care among this ethnic minority group.

Project Lead: Dr Gemma Clarkes, Marie Curie Senior Research Fellow in Palliative Care, University of Leeds.

Local Lead: Angela Egdell, Director of Care at St Oswald’s Hospice.

Academy of Medical Sciences and Marie Curie

March 2021 – February 2023

Aim:

To explore ways to improve access to palliative care across diverse South Asian communities in the UK.

Objectives:

To undertake qualitative interviews and a narrative enquiry approach with patients and relatives to:

  • Understand illness progression, care trajectory, and social relationships on the journey to using palliative care (PC) services.
  • Identify issues around access to PC, which may include topics such as: knowledge and perceptions around PC services and their availability, use and experiences.

To use focus groups with patients, relatives, members of the public and healthcare professionals to further explore the key issues and narrative themes from the interviews and seek to find solutions to barriers and enhance facilitators.

Stage 1

Qualitative interviews used a narrative inquiry approach to explore participants’ illness progression and care trajectory with a focus on issues relating to access to palliative care or their experience of being a relative/carer of someone with progressing illness/disease.

Stage 2

Focus groups with patients, relatives, members of the public and healthcare professionals. Discussions were structured around the key access issues and narrative themes identified from the interviews. Focus groups sought to develop access facilitators and solutions to barriers.

Read the published report below.

Download the report