Promoting personhood in social care
| ISRCTN | ISRCTN85308568 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN85308568 |
| IRAS number | 342858 |
- Submission date
- 09/07/2025
- Registration date
- 22/07/2025
- Last edited
- 21/07/2025
- Recruitment status
- Not yet recruiting
- Overall study status
- Ongoing
- Condition category
- Other
Plain English summary of protocol
Background and study aims
The delivery of person-centred health and social care remains a strategic priority for NHS Scotland and the Scottish Government. The question of what it means to be a person has been at the heart of philosophical debate for hundreds of years. But whilst all human beings may be classed as people, some people with disabilities are considered to be less human than others. This raises a fundamental question as to how person-centredness meaningfully translates into health and social care practice. Whilst the concept of ‘personhood’ has been prevalent in the context of dementia care little attention has been given to it in the context of services that support people with learning disabilities. This study will therefore use an experience-based co-design (EBCD) approach to explore how personhood is understood and experienced by people with learning disabilities and by staff who provide support in a social care context, in order to identify and co-design service improvements. As a type of participatory action research, EBDC focusses on the experiences of people using services, of carers and of staff. In this study, I will be inviting people to share their stories about their personhood and about support. Through identifying ‘emotional touchpoints’ in the stories shared, participants will come together and agree areas for service improvement in relation to person-centred support, using the co-design process to achieve this.
Who can participate?
Adults who have a learning disability, or are the carer of an adult with a learning disability or who provide support in social care are eligible to participate in the study.
What does the study involve?
The study will involve undertaking conversational interviews with participants (people with learning disabilities, carers, staff). The data from the interviews will be analysed and the key themes and emotional touchpoints created into a film; this will be initially shared with people with learning disabilities and carers for discussion and to identify any gaps in the information shared. There will also be a workshop for staff to validate the feedback from their interviews. Ideas for service improvements will be discussed and agreed at each workshop. All participants will then come together for an initial joint co-design workshop, where the film will be shown to spark discussion about the service improvements discussed at the previous workshops. The whole group will agree and prioritise service improvements to take to the 3 co-design workshops. Outputs from these workshops will be piloted and evaluated depending on what they are and what the participants decide. A celebratory event will mark the end of the research and will provide a platform to showcase outcomes to key stakeholders.
What are the possible risks and benefits?
It is hoped that participation will be a positive and empowering experience and will allow views to be heard and will lead to improvements to within social care support for people with learning disabilities. Due to the nature of the questions in the conversational interviews, it is not anticipated that distress will be caused. Participation in the conversational interview or workshops constitutes low level involvement. However, I will ensure there is a safe place for people to have time out and a debrief if required, which will utilise my skills and experience as a therapist. Participants will have the option to bring someone with them to the conversational interview for support if required, although it will be made clear that this person will not be able to contribute to the conversation. A trusted health professional from the Learning Disability Service will be identified should any participant require follow-up support at any point in the research.
Where will study be run from?
The study is taking place in the Learning Disability Service in NHS Borders (UK). The main sponsor and supervisory arrangements are through Queen Margaret University as part of a professional doctorate.
When is the study starting and when is it expected to end?
October 2024 to June 2026.
Who is funding the study?
Queen Margaret University (UK)
Who is the main contact?
Clare Gillespie, clare.gillespie@nhs.scot
Contact information
Public, Scientific, Principal Investigator
Learning Disability Service
NHS Extension Building
Scottish Borders Council HQ
Newtown St Boswells
Melrose
TD60SA
United Kingdom
 ORCID ID |
0009-0009-8922-7984 |
|---|---|
| Phone | +44 7725907324 |
| clare.gillespie@nhs.scot |
Study information
| Study design | Single-centre qualitative participatory study using experience-based co-design methodology |
|---|---|
| Primary study design | Observational |
| Secondary study design | Qualitative research |
| Study setting(s) | Built environment/local authority, Community |
| Study type | Other, Quality of life, Efficacy |
| Participant information sheet | 47640 Participant info EBCD .pdf |
| Scientific title | Exploring personhood in person-centred support: an experience based co-design approach with people with learning disabilities and social care staff |
| Study acronym | EBCDPCS |
| Study objectives | The principle aim of the research is to co-design service improvements with people with learning disabilities, carers and staff that promote personhood in social care. The key objectives are: 1. To understand how personhood (“all about me”) is understood and experienced by people with learning disabilities who receive support 2. To understand how personhood is understood and experienced by social care staff who provide support to people with learning disabilities 3. To bring people with learning disabilities and staff together to reflect on findings from the above objectives and establish improvements to services in relation to promoting personhood in practice 4. To co-design service improvements that promote personhood in social care support |
| Ethics approval(s) |
Submitted 02/06/2025, Divisional Ethics - Occupational and Arts Therapy (Queen Margaret University, Musselburgh, EH21 6UU, United Kingdom; +44 131 474 0000; OTATethics@qmu.ac.uk), ref: Ref 2024/13 |
| Health condition(s) or problem(s) studied | Person-centred support and people with learning disabilities |
| Intervention | 1-1 hour long interviews with people with learning disabilities, carers and staff Workshops x 5: 1 = 135 mins (Feedback/validation of interview themes: 1 x people with learning disabilities & 1 x staff) 2 = 180 mins (Co-design) 3-5= 120 mins each (Co-design) |
| Intervention type | Other |
| Primary outcome measure | People’s experiences (people with learning disabilities, carers, social care staff) of personhood captured using conversational interviews and analysed using Reflexive Thematic Analysis |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 01/10/2024 |
| Completion date | 01/06/2026 |
Eligibility
| Participant type(s) | Carer, Employee, Service user |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Upper age limit | 99 Years |
| Sex | Both |
| Target number of participants | 40 |
| Key inclusion criteria | 1. A person who: 1.1. has a learning disability and attends a Local Citizen’s Panel (LCP) or is supported by the Local Area Co-ordinator (LAC) service within a specified geographical area 1.2. is a carer/guardian of a person with a learning disability within the specified geographical area 1.3. can give informed consent 2. A person who: 2.1. is currently working as a social care worker within an identified 3rd Sector Service Provider (within a specific geographical area) commissioned by Scottish Borders Learning Disability Service (LDS) 2.2. can give informed consent 2.3. is over the age of 18 years |
| Key exclusion criteria | 1. A person who: 1.1. is under the age of 18 years 1.2. has a learning disability and cannot give informed consent 1.3. is a carer/guardian and cannot give informed consent 1.4. is currently attending music therapy with me 1.5. is not the carer/guardian of a person with a learning disability 2. A person who: 2.1. does not currently work as a social care worker within the identified 3rd Sector Service Provider 2.2. cannot give informed consent 2.3. is under the age of 18 years |
| Date of first enrolment | 01/09/2025 |
| Date of final enrolment | 01/06/2026 |
Locations
Countries of recruitment
- Scotland
- United Kingdom
Study participating centre
Melrose
TD6 9DB
United Kingdom
Sponsor information
University/education
Queen Margaret Drive
Musselburgh
Edinburgh
EH21 6UU
Scotland
United Kingdom
| Phone | +44 131 474 0000 |
|---|---|
| JScobbie@qmu.ac.uk | |
| Website | http://www.qmu.ac.uk/ |
"ROR" |
https://ror.org/002g3cb31 |
Funders
Funder type
University/education
Private sector organisation / Universities (academic only)
- Alternative name(s)
- Queen Margaret University, Edinburgh, QMU
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 31/01/2028 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | Planned publication in a peer-reviewed journal |
| IPD sharing plan | The datasets generated and/or analysed during the current study are not expected to be made available due to the research being undertaken as part of a professional doctorate. Data collected will be through interviews and co-design workshops. Full consent will be sought for each stage of data collection. Some of the data will be incorporated in the thesis and future publications in anonymised form. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Participant information sheet | 21/07/2025 | No | Yes |
Additional files
Editorial Notes
21/07/2025: Trial's existence confirmed by Queen Margaret University.
