Understanding and using experiences of social care to guide service improvements: translating a co-design approach from health to social care

Background 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. Objectives 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. Design and 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. Results 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. Conclusions 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. Limitations 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. Future work Exploring the approach using a single pathway, such as assessing eligibility for care and support, could add additional insights into its transferability to social care. Trial registration This trial is registered as Current Controlled Trials ISRCTN98646409. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information. Plain language summary Local councils need to find new ways of using people’s experiences of social care to improve services. We explored whether a way of improving health services can improve social care services. ‘Experience-based co-design’ is a complicated name. It means working with people who use health or social care services to improve that service, and interviewing people as part of this process. Accelerated experience-based co-design uses existing interviews instead of new interviews. To see if the approach works in social care, we chose the topic of loneliness because many of us experience loneliness. We worked with Doncaster City Council because it has been focusing on loneliness. We interviewed 37 people across England and recorded what they said about loneliness. We made a film about their experiences that showed examples of good or poor care. We call these touch points. We held three workshops in Doncaster. Workshop 1 was with people who work in social care as paid workers or volunteers, and workshop 2 was with people who use social care services. In both workshops, people made a list of types of support that needed improvement. Both groups attended workshop 3, watched the film and decided what to focus on from the two lists. Two groups were set up to work on improving support for loneliness in Doncaster. Each group met seven times. One focused on taxi services, and the other group focused on supporting people to do activities they did before the pandemic. A researcher attended these meetings and talked with everyone involved to see how this approach worked. At the end, there was a celebration event. We found that loneliness is complicated. We found the approach to improving support does work in social care, but it needs some changes because social care is not like health care. We suggest ways the approach can be done differently. Scientific summary Background 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. Aim To assess whether an effective and efficient co-design approach, AEBCD, can be translated from health to social care. Objectives 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. Methods 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. Co-design phase Doncaster was the site for exploring the AEBCD approach, which involved staff (paid and volunteers) and users of loneliness support in a two-stage process. Stage 1 involved a set of three workshops in which staff and support users worked together, first separately, and then jointly in the third workshop, to share experiences of local loneliness support and agree improvement priorities. In stage 2, these priorities were furthered by staff and support users together in smaller co-design groups. Evaluation of this approach adopted methods used successfully in the evaluation of AEBCD in health settings, including interviews, ethnographic observation, attending planning meetings and co-design groups. Our focus included the acceptability of the approach to staff and support users, and what adaptations are needed for future use of AEBCD in social care. Findings Discovery phase The findings suggest that loneliness is complicated and may stem from unfulfilled interpersonal social needs but also from a wider undermining and invalidation of people’s social identity. Unmet care and support needs meant participants felt unheard, in turn perpetuating feelings of abandonment and social alienation. Furthermore, the stigmatisation of loneliness meant many participants endured the phenomenon in silence. These findings should be considered when developing interventions that aim to ameliorate loneliness. Co-design phase We found AEBCD has considerable potential for transfer from the healthcare improvement field to social care. The adapted process was largely acceptable to co-design participants, who reported a range of benefits and enjoyed the work. The two co-design groups identified various loneliness support improvements, some of which had more easily defined routes to implementation than others. Learning from the evaluation pointed both to some common aspects of using AEBCD in health care and in loneliness support and to some differences requiring attention to improve the fit of AEBCD for use in social care settings which are preventative, community-based and involve multiple providers. Dissemination The catalyst film and a new section containing summaries of key themes, video, audio and text extracts from the discovery phase interviews are published on Socialcaretalk.org. The findings will be further disseminated via academic publications and conference presentations. Limitations 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. Conclusions 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. Research recommendations Recommendations for transferring accelerated experience-based co-design to social care 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. General recommendations Many of the general recommendations echo wider research on the conditions for successful organisational change: Ensure good facilitation of the workshops and the co-design group work and establish ground rules for both. Ensure paid staff involved in the co-design process – whether as participants or supporting the process itself – have protected time for the work involved. Be clear about processes, aims, expectations and roles from the outset and think about endings. Ensure that groups are large enough to represent all relevant parties and absorb inevitable uneven meeting attendance. Consider aspects of the process which may exclude some people and what adaptations may accommodate these. Ensure co-design group participants know that they can seek outside views and bring in external experts as necessary. Areas for future research include the costs and opportunity costs of the approach compared to more ‘top-down’ initiatives; the purpose and focus of the catalyst film; the impact of AEBCD as an intervention for people who use social care services – what this might mean to participants, and the potential of the approach to generate service improvements; the adaptation of the approach to enable greater inclusion and accessibility; and exploring whether using AEBCD in a more clearly defined area avoids some of the challenges identified in this study. Finally, there is scope to explore using AEBCD in multisector improvement efforts, for example in mental health care, learning disabilities and frailty in old age. Trial registration This trial is registered as ISRCTN98646409. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information.