Meeting social welfare legal needs in end-of-life care: co-creation of a system-wide research partnership.

ABSTRACT

Background: Social welfare legal needs (matters of daily life, such as finances, housing and employment with legal rights, entitlements or protections) are prevalent towards end of life, creating significant difficulties for both patients and carers. Most people do not know where to go, although a range of services provide advice and support for addressing social welfare legal problems. Navigating this complex and fragmented system across health, social care and social welfare legal support is very challenging. Healthcare professionals are often the first contact for social welfare legal needs, although these are often overlooked and their impact on health and well-being unrecognised. Interprofessional learning can increase awareness of social welfare legal needs and build connections between service providers, offering a more holistic and cohesive multiagency response to the complex needs around end of life. The aim of the research was to co-create a robust foundation for cross-agency research investigating the impact of interprofessional learning on social welfare legal needs towards end of life in the North East England region. Objectives: Convene a research partnership group across academics, multiagency service providers and members of the public with lived experience. Consider and agree key issues for successful place-based multiagency research in this area. Co-create a complexity-appropriate research proposal with interprofessional learning as an intervention. Methods: A series of research activities was implemented to convene a multiagency partnership group and consider the key issues for successful place-based multiagency research. Data were collected from two online workshops, an optional reflective workbook, and a modified Delphi technique. Initial participants were selectively recruited from our established stakeholder and patient and public involvement groups. Increasing diversity of the partnership continued throughout the project, using contacts provided by group members. Representation of services supporting underserved groups was a priority. Results: All invited participants were recruited to the partnership, although contribution to research activities was variable. The partnership bridged knowledge gaps between services and united diverse perspectives, expertise and experience. A greater understanding of the barriers and opportunities for place-based multiagency working was generated, such as considering the importance of language in facilitating collaboration and responding to concerns around capacity. A non-hierarchical partnership was meaningful, with both personal and professional insights viewed as equally important. Facilitators to engagement with interprofessional learning were identified including the need for leadership endorsement. A non-traditional, mixed-method approach to interprofessional learning evaluation was favoured, with both qualitative and quantitative measures at three levels patient and carer, professional learners and organisations. Important outcomes included raising awareness, connectedness and space to reflect. Limitations: The partnership group expanded throughout the course of the project. While this extended diversity, variable participation hindered depth of discussion, with participants engaging at different points and with different understanding levels of the project. Supplementary materials provided some mitigation. Capacity and funding constraints limited engagement for some participants. Conclusions: Convening a multiagency partnership generated insights into the benefits, barriers and facilitators to research co-design and potential measures of success of interprofessional learning. Future work Learning from this project has informed a complexity-appropriate research proposal to evaluate the impact of interprofessional learning as an intervention across different stakeholders. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR135276.

Social welfare legal issues, such as unsuitable housing, job difficulties and money concerns, are common in the last 12 months of a person's life and they affect carers too. Getting the right help can be difficult as it is hard to know where to go. Organisations and services often work separately from each other. Healthcare professionals are often the first contact for social welfare legal needs, but they may not be able to provide the required support. Interprofessional learning brings professionals together to learn from each other and connect services better. We think this will make it easier for people to get the help they need when the same is required. We set up a group of professionals and four people with personal experience. This partnership group started with people and organisations we knew already but more joined during the project. By the end, 37 different services, representing a range of health, advice and community services, had joined the research group. All services had experience of social welfare legal issues in the last 12 months of life. The group discussed running research together and how interprofessional learning could be tested in our next research project. Research activities were two online meetings to discuss key questions a workbook which gave time to think about the questions we were asking a survey which asked participants their views about measuring success of interprofessional learning. Group members brought a variety of experiences and opinions. Some had difficulty taking part, mainly because of time. We learnt that professional and personal experiences are as important as each other and that it is important to avoid jargon. Testing if interprofessional learning makes a difference needs to look at people using services, professionals and organisations. We have written a funding application, based on what we have learnt in this project.