Improving palliative care for babies, children, young people and adults from ethnically diverse communities: a qualitative multiple case study

Background

Palliative care services appear less able to reach people from ethnically diverse communities and if they do, people from these communities’ report having different and often poorer experiences. The barriers to access are well described so research investigating potential solutions is needed.

Aims

To understand how improved palliative care outcomes for people from ethnically diverse communities have or could be achieved, and what contextual issues have influenced these outcomes.

Methods

Qualitative multiple case study. The cases were defined as areas across England with services providing generalist or specialist palliative care to adults and/or children. Interviews were conducted with patients, family carers, parents (from ethnically diverse communities), health and social care professionals. Data were analysed using thematic framework analysis.

Findings

Cases (n=6) included 71 participants. Five solution focused themes were identified; how the conditions for culturally and spiritually safe care are created; engagement and trust building between ethnically diverse communities and the providers that serve them as a mechanism to promote access; workforce composition and diversity helping to bridge the gap between ethnically diverse communities and services; how communication practices enable equitable care for people who have English as an additional language and organisational commitment and partnership as drivers of sustainable change.

Conclusions

Equitable access to quality palliative care is not a marginal policy issue with the economic and moral argument for change strong. Care systems need to recognise, partner with, and build upon existing community strengths. Change requires intent, accountability, leadership and the reallocation of attention and responsibility.

Highlights

• Environmental changes and flexible care enable people to feel safe and respected.

• Using an asset-based community engagement approach is useful to improve access.

• Local staff can bridge the gap between services and ethnically diverse communities.

• Access to interpreters and translated material is imperative for equitable care.

• Sustainable change requires organisational commitment and partnership working.