Plain English Summary
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?
University of Oxford (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?
Dr Sara Ryan
sara.ryan@phc.ox.ac.uk
Trial website
Contact information
Type
Scientific
Primary contact
Dr Sara Ryan
ORCID ID
http://orcid.org/0000-0002-7406-1610
Contact details
Nuffield Department of Primary Care Health Sciences
University of Oxford
Radcliffe Observatory Quarter
Woodstock Road
Oxford
OX2 6GG
United Kingdom
+44 (0)1865 289374
sara.ryan@phc.ox.ac.uk
Type
Scientific
Additional contact
Dr Angela Martin
ORCID ID
Contact details
Nuffield Department of Primary Care Health Sciences
University of Oxford
Radcliffe Observatory Quarter
Woodstock Road
Oxford
OX2 6GG
United Kingdom
+44 (0)1865 289373
angela.martin@phc.ox.ac.uk
Additional identifiers
EudraCT number
Nil known
ClinicalTrials.gov number
Nil known
Protocol/serial number
NIHR128616 V1, IRAS 279458
Study information
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?
Acronym
Study hypothesis
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
Not provided at time of registration
Study design
Qualitative observational study
Primary study design
Observational
Secondary study design
Qualitative
Trial setting
Community
Trial type
Quality of life
Patient information sheet
See: https://www.phc.ox.ac.uk/research/health-experiences
Condition
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
Phase
Drug names
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 trial start date
01/04/2020
Overall trial end date
31/01/2023
Reason abandoned (if study stopped)
Eligibility
Participant 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
Participant type
Mixed
Age group
Adult
Gender
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
Participant exclusion criteria
Does not meet inclusion criteria
Recruitment start date
01/06/2020
Recruitment end date
31/10/2022
Locations
Countries of recruitment
United Kingdom
Trial participating centre
University of Oxford
Nuffield Department of Primary Care Health Sciences
Radcliffe Observatory Quarter
Woodstock Road
Oxford
OX2 6GG
United Kingdom
Sponsor information
Organisation
University of Oxford
Sponsor details
Research Services Medical Sciences
Joint Research Office
2nd Floor
Boundary Brook House
Churchill Drive
Headington
Oxford
OX3 7LE
United Kingdom
+44 (0)1865 289885
ctrg@admin.ox.ac.uk
Sponsor type
University/education
Website
Funders
Funder type
Government
Funder name
National Institute for Health Research
Alternative name(s)
NIHR
Funding Body Type
government organisation
Funding Body Subtype
National government
Location
United Kingdom
Results and Publications
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 statement:
The current data sharing plans for this study are unknown and will be available at a later date.
Intention to publish date
31/12/2023
Participant level data
To be made available at a later date
Basic results (scientific)
Publication list