Exploring the experiences of loneliness to improve social care
| ISRCTN | ISRCTN98646409 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN98646409 |
| IRAS number | 279458 |
| Secondary identifying numbers | NIHR128616 V3, IRAS 279458 |
- Submission date
- 11/02/2020
- Registration date
- 19/02/2020
- Last edited
- 16/09/2024
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English summary of protocol
Background and study aims
Local authorities need to find new ways of improving service design and quality using social care users’ experiences. This study will explore if an approach to service improvement used in healthcare is effective in social care, using loneliness as a focus.
Who can participate?
Adult social care users who self-identify as being lonely and social care staff.
What does the study involve?
There are two stages: 1. DISCOVERY. Interviews with a national sample of 40-50 people exploring their experiences of loneliness and social care, and with 20 social care staff to explore opportunities for service improvement around loneliness. Interviews will be filmed or audio recorded if the person prefers, typed in full and analysed for ‘touch points’ which show positive care moments or areas where services could be improved. A 'touch points' film will be produced. 2. CO-DESIGN involves separate feedback workshops with staff and social care users followed by a joint meeting where the film is shown to both. Participants work together to agree a list of priorities to put in place for improving services.
What are the possible benefits and risks of participating?
This research will allow us to think about how social care services can be improved and provide a resource for people experiencing loneliness, social care staff and students. It is possible that people taking part in the research interviews may feel some distress. Our researchers are experienced in managing this.
Where is the study run from?
Manchester Metropolitan University (UK)
When is the study starting and how long is it expected to run for?
June 2020 to January 2023
Who is funding the study?
National Institute for Health Research (UK)
Who is the main contact?
Prof Sara Ryan, Sara.Ryan@mmu.ac.uk
Emmie Morrissey, e.morrissey@mmu.ac.uk
Contact information
Scientific
Manchester Metropolitan University
Brooks Building
53 Bonsall Street
Manchester
M15 6GX
United Kingdom
 ORCID ID |
0000-0002-7406-1610 |
|---|---|
| Phone | +44 (0)161 247 1917 |
| sara.ryan@mmu.ac.uk |
Public
Manchester Metropolitan University
Brooks Building
53 Bonsall Street
Manchester
M15 6GX
United Kingdom
| Phone | +44 (0)161 247 1625 |
|---|---|
| e.morrissey@mmu.ac.uk |
Study information
| Study design | Qualitative observational study |
|---|---|
| Primary study design | Observational |
| Secondary study design | Qualitative |
| Study setting(s) | Community |
| Study type | Quality of life |
| Participant information sheet | Not available in web format, please use the contact details to request a patient information sheet. |
| Scientific title | Understanding and using people’s experiences of social care to guide service improvements: could an effective and efficient co-design approach be translated from health to social care using the exemplar of loneliness? |
| Study objectives | The study aim is to assess whether an effective and efficient co-design approach ‘accelerated experience-based co-design' (AEBCD) can be translated from health to social care using the experience of loneliness as an exemplar. |
| Ethics approval(s) | 20/WM/0223 |
| Health condition(s) or problem(s) studied | Social care (loneliness) |
| Intervention | In-depth interview study involving a national sample of 40-50 social care users who experience loneliness and 20 social care staff who provide support or manage these services with a remit to tackle loneliness from local authorities (LAs), private/voluntary sectors. Data will be analysed thematically using a grounded theory approach. A catalyst film will be co-produced capturing touch points (good practice points or examples where services could be improved) from the interview data. One LA will be used as the test site for the AEBCD process which will involve workshops with service users, staff and the identification of service improvement priorities. Evaluation of this approach will adopt methods used successfully in the evaluation of AEBCD in health settings including ethnographic observation, attending planning meetings and co-design groups. Our focus will include the acceptability of the approach to social care staff and what adaptations might be needed for future use in social care. There are two stages: 1. DISCOVERY. Interviews with a national sample of 40-50 people exploring their experiences of loneliness and social care, and with 20 social care staff to explore opportunities for service improvement around loneliness. Interviews will be filmed or audio recorded if the person prefers, typed in full and analysed for ‘touch points’ which show positive care moments or areas where services could be improved. A 'touch points' film will be produced. 2. CO-DESIGN involves separate feedback workshops with staff and social care users followed by a joint meeting where the film is shown to both. Participants work together to agree a list of priorities to put in place for improving services. Interviews will include those who are less often heard in research e.g. learning disabled people and people from black and minority ethnic groups. Doncaster will be the test site for stage 2 because loneliness is a high risk in many parts of the city and tackling it is a priority for the local authority. Given the challenges that social care research faces in engaging practice and the time it can take to build and sustain links with local authorities it is important to have a willing organisation who are interested in research and are committed to the topic area. Working with social care service improvement colleagues from adult social care and Doncaster residents who experience loneliness, we will use observations and interviews to study how improvements are made over a nine month period. Key questions will include i) whether this approach using a film based on a national interview study of social care users and staff perspectives of loneliness would work in a local setting and ii) whether this quality improvement approach is acceptable, or needs adapting, for wider use in social care. |
| Intervention type | Other |
| Primary outcome measure | Qualitative methods will be used: 1. To understand how loneliness is i) characterised and experienced by people who are in receipt of social care in England and ii) characterised by social care staff and the voluntary sector 2. To identify how services might be changed to help tackle the problem of loneliness experienced by users of social care 3. To test, 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 |
| Secondary outcome measures | Qualitative methods will be used 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 |
| Overall study start date | 01/04/2020 |
| Completion date | 31/01/2023 |
Eligibility
| Participant type(s) | Mixed |
|---|---|
| Age group | Adult |
| Sex | Both |
| Target number of participants | 1. 40–50 social care users 2. 20 social care staff 3. 8-10 social care users 4. 8-10 social care staff |
| Total final enrolment | 83 |
| Key inclusion criteria | DISCOVERY PHASE 1. social care users who self-identify as being lonely 2. social care staff CO-DESIGN PHASE 3. social care users 4. social care staff |
| Key exclusion criteria | Does not meet inclusion criteria |
| Date of first enrolment | 01/06/2020 |
| Date of final enrolment | 31/10/2022 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centres
Radcliffe Observatory Quarter
Woodstock Road
Oxford
OX2 6GG
United Kingdom
53 Bonsall Street
Manchester
M15 6GX
United Kingdom
Sponsor information
University/education
Directorate of Research and Knowledge Exchange
1.25 Cavendish North Building
Cavendish Street
Manchester
M15 6BG
England
United Kingdom
| Phone | +44(0)161 247 2836 |
|---|---|
| ethics@mmu.ac.uk | |
| Website | http://www.mmu.ac.uk |
"ROR" |
https://ror.org/02hstj355 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 31/12/2023 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Data sharing statement to be made available at a later date |
| Publication and dissemination plan | 1. A section published on Socialcaretalk.org focusing on how people experience loneliness and how services and other people can address this. AUDIENCE: people experiencing loneliness, their family and friends, the wider public, media, social and healthcare staff and students, researchers and policymakers 2. A 20-25 minute catalyst film documenting service improvement touchpoints published on Socialcaretalk.org. AUDIENCE: social care teams and all who are engaged in service improvement initiatives (professionals, commissioners, policymakers, service providers) 3. Recommendations for the use (or adaptation of) AEBCD in social care service improvement. 4. Conference presentations. AUDIENCE: social care academics, professionals and policymakers 5. NIHR HS&DR final report. AUDIENCE: academics, social and healthcare staff and students, policymakers 6. The addition of a new interview collection to the HERG qualitative data archive. This will comprise a set of anonymised (according to the participants’ wishes) interview transcripts and associated materials, copyrighted for teaching, publication, broadcasting and secondary analysis for research and health policy. The archive is available to bona fide researchers under data sharing agreements. AUDIENCE academic researchers and health policy makers, (future) historians, social scientists and other scholars 7. Academic papers: 3 peer reviewed papers will be written up for publication in open access social science, health services research and social care journals. AUDIENCE: academics, social and health care professionals and students, policymakers 8. A half-day event will be held to showcase the findings and generate discussion around service improvement approaches in social care. A film of this event involving brief interviews with attendees will be published on Socialcaretalk.org |
| IPD sharing plan | The current data sharing plans for this study are unknown and will be available at a later date. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| HRA research summary | 28/06/2023 | No | No | ||
| Results article | 01/08/2024 | 16/09/2024 | Yes | No |
Editorial Notes
16/09/2024: Publication reference added.
06/01/2023: Total final enrolment added.
04/01/2023: Contact details updated.
11/10/2022: The contact confirmed the record is up to date.
29/07/2022: The following changes were made to the trial record:
1. The contact details were updated
2. The ethics approval was added.
3. The trial participating centre University of Oxford was removed and Manchester Metropolitan University was added.
4. The sponsor was changed from University of Oxford to Manchester Metropolitan University
5. The plain English summary was updated to reflect these changes.
20/07/2022: Recruitment to this study was not paused as stated. Ethics approval had been delayed due to COVID and was under review.
27/07/2020: Due to current public health guidance, recruitment for this study has been paused.
18/02/2020: Trial’s existence confirmed by National Institute for Health Research (NIHR)
