Meeting Social Welfare Legal Needs in End of Life Care: Co-creation of a System-wide Research Partnership

Proposal: to build research capacity and capability within a multi-agency partnership group in order to improve social welfare support towards end of life.

Background: Social welfare legal (SWL) needs are matters of daily life for which the law defines rights and protections, including finances, employment and housing. They disproportionately affect people with complex health needs and/or social disadvantage and are prevalent and burdensome towards end of life, affecting patients and informal carers. Routes to support are often unclear and difficult to navigate, resulting in unmet need or battles to access support.

Our research has built a network of national stakeholders and generated a proposed system-wide intervention, including interprofessional learning and direct SWL support using link workers and peer support.

Aim and Objectives: The aim of this work is to co-design an intervention delivery strategy and research approach to evaluation of our intervention. We will build research capacity and expertise within our core project team and extend our multi-agency partnership group, increasing representation of disadvantaged groups, research naïve or inexperienced sites and under-researched areas.

Together with people with lived experience, the partnership will co-design an approach to delivery and evaluation of our intervention, leading to a Part 2 application. A complexity-informed approach (Human Learning Systems) will provide the methodological framework. The partnership is intended to be sustained, building the evidence base and supporting innovation in this field.

Methods: A webinar will introduce background, methodology and aims to the partnership group. Two facilitated workshops and a Delphi exercise will follow. Workshop 1 will consider the partnership group as a Learning Community, confirming membership, identifying expertise and experience within the group and agreeing priorities for discussion in Workshop 2.

The Delphi exercise will focus on specific areas of intervention delivery and evaluation. Workshop 2 will build on this, capitalising on the expertise within the partnership group, to agree the research strategy including consideration of meaningful outcomes for our research and the infrastructure needed to deliver it. Thematic analysis of workshops and sense-making of findings by the partnership group will lead to co-production of a Part 2 NIHR funding application.

Timelines for delivery: Month 1: introductory webinar; month 2: Workshop 1; month 3-4: Delphi exercise; month 5: workshop 2 and data analysis; months 6-10: draft, edit and submit Part 2 application; months 9-12: dissemination of findings.

Anticipated impact and dissemination: There is a need and opportunity to foster a system-wide response to SWL needs towards end of life. Our network of national stakeholders has demonstrated commitment to a collective response to a widely recognised problem and provides a route to knowledge mobilisation. Our collaborators at UCL Centre for Access to Justice are working at national policy level to address social determinants of health through closer partnership of providers across health, social care and the wider system supporting SWL needs.

We plan to build the evidence base and support the national dialogue to influence policy change. We will also disseminate our experience of the partnership process through ARC-NENC, Fuse, HLS Collaborative, Voluntary Organisations Network North East and peer review publication.