Co-design in Community Palliative Care Services Involving Service Users and Providers: A Systematic Review

Why is the research needed?

The need for community palliative and end-of-life care is growing. More than 50 million people worldwide need palliative care each year. In England and Wales in 2023, 57.2% of deaths occurred in community settings. This means many people need well-planned support at home, in care homes and hospices. Community palliative care often involves several services and professionals, but services may be shaped by local pressures rather than by what matters most to patients, families, carers, and frontline staff. This systematic review is needed to understand how services are designed with input from the people who use and deliver them, and to identify practical learning for future service improvements.

What are we doing? 

We will explore how patients, families, carers and professionals are involved in designing and improving community palliative and end-of-life care services. This approach is often called co-design. In this review, we will look at who is involved in co-design, how they take part, what methods are used, and what helps or prevents meaningful involvement. The project will be carried out as a systematic literature review. We will search for relevant research studies and evidence, assess them against clear criteria, and summarise the findings. We will review and bring together learning on co-design approaches, benefits, challenges, evidence gaps, and practical lessons for future​ improvement and implementation planning.

How are we working with communities, services and organisations?

This project is being developed collaboratively with an academic review team at the University of Cambridge and will involve members of the public and professionals in interpreting the relevance of the key findings.

What will the impact and benefits of this research be?

This systematic review will summarise existing evidence regarding to what extent community palliative and end-of-life care services are co-designed with users and providers of care. We will explore what co-design approaches have been used, who is involved, what works well, and what barriers services face. The findings will give researchers, service managers, commissioners, and policy audiences practical evidence to support future service improvement and implementation planning.

What do we have planned for knowledge mobilisation and implementation?

The main output will be the publication of the findings as a research paper. To support wider use, we also plan to develop a short briefing for service providers, commissioners and policymakers. This will summarise key learning from the review and highlight practical considerations for working closely with key stakeholders in developing and delivering service improvements.