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.

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.

Age, memory loss and perceptions of dementia in South Asian ethnic minorities.

BACKGROUND: South Asian older adults are represented less frequently in mainstream mental health services or those for people with dementia. This study aimed to explore in detail the perceptions of dementia (symptoms, causes, consequences, treatments) held by South Asians and to discern how these understandings vary by age and by the self-recognition of memory problems, as these influence help-seeking behaviour. METHODS: Participants were allocated to three groups: younger adults; older adults; and older adults with subjective memory problems. They completed the semi-structured Barts Explanatory Model Inventory for Dementia schedule, whilst older adults also completed measures of cognition (MMSE), and depression (GDS). Interviews were conducted in English, Gujarati or Urdu. RESULTS: Groups were similar in identifying unusual forgetting and confusion as the most frequent symptoms; stress and age as the most frequent causes; and talking to your GP/nurse, taking medication, and talking to family and friends as the most frequent treatments. Younger adults more often knew about risk factors and reported practical consequences more than older adults. Older adults with subjective memory problems were more likely to describe sleep related problems or symptoms commonly associated with depression. They more often cited as causes of dementia lack of sleep, side effects of medication and medical reasons, and mentioned religion as a means to cope. CONCLUSIONS: Findings highlight variability in perceptions of dementia across the South Asian Community and identify specific areas where dementia awareness could be raised in South Asian sub-groups to improve timely diagnosis, treatment outcomes and service access.

Perceptions of self-defined memory problems vary in south Asian minority older people who consult a GP and those who do not: a mixed-method pilot study.

OBJECTIVE: South Asian older adults access services for mental health problems and dementia less than other older people in the UK, unlike for physical health problems. This pilot study investigated how South Asians with self-defined memory problems, with and without GP consultation, construe the symptoms, causes, consequences and treatment of the condition. METHODS: Participants were recruited through community centres, their networks and memory clinics in Greater Manchester. The newly developed Barts Explanatory Model Inventory for Dementia (BEMI-D) was administered to 33 (18 M, 15 F) older South Asians aged 65 or above with memory problems in English, Gujarati or Urdu. Furthermore, cognition, executive function and depression were assessed. RESULTS: Perceptions of dementia varied by GP consultation for memory problems. A greater proportion of older adults without a consultation considered memory problems to be given by God, saw acceptance of fate as an alternative treatment and did not identify medical support as appropriate. Forgetfulness and loss of social meaning were identified as symptoms of dementia more by those with a consultation. Higher levels of diabetes, heart disease and depression were found in those without a consultation. CONCLUSIONS: Differences in perceptions may influence the decision about consulting a GP. Similarly, consultation for memory problems appears linked to extent physical health problems and mental health consultation (depression). These variations reported on a small scale in this pilot study suggest the need to explore the impact of perceptions on rates of GP consultation, so as to improve timely diagnosis and access to appropriate services.