Authors' objectives: Local authorities need to find new ways of collecting and using data on social care users’ experiences to improve service design and quality. Here we draw on and adapt an approach used in the healthcare improvement field, accelerated experience-based co-design, to see if it can be translated to social care. We use loneliness support as our exemplar. To understand how loneliness is understood and experienced by members of the public and characterised by social care and voluntary sector staff; to identify service improvements around loneliness support; to explore whether accelerated experience-based co-design is effective in social care; and to produce new resources for publication on Socialcaretalk.org. Local authorities need to find new ways of collecting and using data on social care users’ experiences to improve service design and quality. Our study has drawn on and adapted as appropriate an approach, accelerated experience-based co-design (AEBCD), from the healthcare improvement field to address this need using loneliness as a focus. Loneliness can have a well-documented and significant negative impact on health and quality of life. While many and varied preventative activities are instigated in the community, there is little evidence about their effects. To understand how loneliness is (1) characterised and experienced by people who are in receipt of social care in England and (2) characterised by social care staff and the voluntary sector. To identify how services might be changed to help tackle the problem of loneliness experienced by users of social care. To explore, with one local authority, whether an approach to service improvement, known to be effective in health care, could be adapted for use in social care. To disseminate all study outputs and publish resources on a newly established Socialcaretalk.org platform for public, family carers, service users, voluntary organisations, researchers, teachers, policy-makers and providers.

Authors' results and conclusions: Accelerated experience-based co-design demonstrated strong potential for use in social care. Diverse experiences of participants and fuzzy boundaries around social care compared to health care widened the scope of what could be considered a service improvement priority. Co-design groups focused on supporting people to return to pre-pandemic activities and developing a vulnerable passenger ‘gold standard’ award for taxi drivers. This work generated short-term ‘wins’ and longer-term legacies. Participants felt empowered by the process and prospect of change, and local lead organisations committed to take the work forward. Using an exemplar, loneliness support, that does not correspond to a single pathway allowed us to comprehensively explore the use of accelerated experience-based co-design, and we found it can be adapted for use in social care. We produced recommendations for the future use of the approach in social care which include identifying people or organisations who could have responsibility for implementing improvements, and allowing time for coalition-building, developing trusted relationships and understanding different perspectives. The strengths of using AEBCD within social care are very apparent, and it was possible to identify user, group, social and political values. There was strong articulation by co-design group members of feelings of empowerment and the importance of being listened to. The development of active citizenship and political value was apparent in the way working group members discussed how they would take learning from the project to other settings, and their determination to continue with this work. Adaptations are necessary for a social care context; however, some of these are more a question of degree or nuance than a departure from the previously evaluated model.

Authors' recommendations: Identify people or organisations who potentially could have responsibility for implementing improvements, including finding relevant funding. Identify an appropriate sample of staff and people with lived experience (PWLE), taking time to fill gaps in representation of provision, knowledge and people’s characteristics, and consider whether staff and PWLE have distinct or shared experiences and how to build on these. Time is needed for coalition-building, developing trusted relationships and understanding different perspectives. Consider whether PWLE and staff participants have pre-existing relationships or should be selected on account of these, and the impact of having or not having such relationships. Consider opportunities for co-design group members to continue contributing their expertise.

Authors' methods: Discovery phase: in-depth interviews with a diverse sample of people in terms of demographic characteristics with experience of loneliness, and 20 social care and voluntary staff who provided loneliness support. Production of a catalyst film from the public interview data set. Co-design phase: exploring whether the accelerated experience-based co-design approach is effective in one local authority area via a series of three workshops to agree shared priorities for improving loneliness support (one workshop for staff, another for people with experience of local loneliness support, and a third, joint workshop), followed by 7-monthly meetings by two co-design groups to work on priority improvements. A process evaluation of the co-design phase was conducted using interviews, ethnographic observation, questionnaires and other written material. COVID-19 temporarily affected the capacity of the local authority Project Lead to set up the intervention. Pandemic work pressures led to smaller numbers of participating staff and had a knock-on effect on recruitment. Staff turnover within Doncaster Council created further challenges. Discovery phase In-depth interviews were conducted online or by telephone with a diverse, national sample of 37 adults who experience loneliness, and 20 social care staff who provide support or manage these services with a remit to tackle loneliness from local authorities and private/voluntary sectors. Data were analysed thematically. A catalyst film was co-produced capturing touch points (good practice points or examples where services could be improved) from the data. The project was disrupted by the COVID-19 pandemic and associated lockdown restrictions. The discovery phase fieldwork was moved online, which may have hindered participation. The capacity of the project partner, Doncaster Council, to participate in the co-design phase was temporarily affected by overriding priorities.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR128616

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/MYHT8970

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: United Kingdom

DOI: 10.3310/MYHT8970

Organisation Name: NIHR Health and Social Care Delivery Program

Contact Name: Rhiannon Miller

Contact Email: rhiannon.m@prepress-projects.co.uk