Palliative End of Life Holistic Needs Community Engagement and Insight

This work aims to understand end‑of‑life needs across seldom‑heard communities and identify the barriers, preferences, and priorities that shape their experiences. It also tests and refines the national HNA to ensure it is culturally safe, emotionally sensitive, and grounded in trusted VCSE partnerships.

Why This Matters

Talking about death is emotionally and culturally sensitive, and many people fear withdrawal of care rather than support for living well. Without culturally safe engagement, the original HNA design risked being misunderstood and could have widened existing inequalities.

What we did

We were asked to focus on Bangladesh communities, Farming communities, and people experiencing homelessness.

Worked with VCSE partners to reach diverse communities and tested the original HNA through a trial session, identifying key accessibility and design issues.

Shifted the engagement approach to a conversational, plain‑language, trauma‑informed model, delivering four community sessions and 1:1 survey support.

Raised wider awareness through social media and gathered detailed insight from 24 group participants and 25 individual conversations to shape the refined HNA.

We widened our reach with further engagement within low IMD, people with no recourse to public funds and rural communities.

Outcomes

What we achieved!

Identified major emotional, cultural, religious, and practical barriers to discussing end‑of‑life needs, along with universal priorities such as dignity, comfort, warmth, safety, and pain control. Strengthened trust and accessibility through VCSE partnerships and highlighted essential staff training needs around trauma, culture, and sensitive communication.