Studying how joining a support group for people with personality disorder affects their well-being
| ISRCTN | ISRCTN10540196 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN10540196 |
| IRAS number | 316791 |
| Secondary identifying numbers | IRAS 316791 |
- Submission date
- 18/01/2023
- Registration date
- 24/02/2023
- Last edited
- 18/01/2024
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English Summary
Background and study aims
Personality disorder is a mental health condition characterized by long-term patterns of thoughts, feelings, and behaviors that deviate significantly from cultural and societal expectations. These patterns can cause significant distress and difficulty functioning in relationships, work, and other areas of life.
Individuals with complex needs refer to those who have multiple and interrelated physical, mental, and social health problems, which require coordinated care and support. They may have more than one diagnosis, and their condition may be considered as more difficult to diagnose, treat and support than others. They are often people who have been in and out of different services, and have not had their needs met by any single service.
Examples of individuals with complex needs include those with personality disorder and co-occurring substance abuse, severe mental illness, physical health conditions, history of trauma, homelessness, or involvement in the criminal justice system.
This research proposes to investigate the impact of a Service User Network (SUN) on the lives of individuals living with personality disorder and complex needs as a new addition to therapeutic interventions.
The aim of this study is to understand the perspective of individuals living with Personality disorder who have accessed the SUN, through conducting interviews. This study has three objectives:
a) To explore if and how the SUN has supported service users recovery and wellbeing, and what role the SUN facilitators play in this.
b) To present a model to explain and understand the support received from the SUN.
c) To build a theory around if and how peer-led intervention are meaningful for individuals living with Personality Disorder.
Who can participate?
Adults aged 18 years or older, who have been accessing the Service User Network for a period of at least 2 months. Participants must be living in the community (i.e not currently an inpatient) and must have the capacity to consent to their involvement.
What does the study involve?
Participants will be recruited via individuals who access the SUN groups. Participants will be required to complete a consent form, provide some personal information (e.g. age, locality) and take part in an interview.
This research will use Constructivist Grounded Theory methods. This means that the data received from the interviews and the analysis of this data will be carried out alongside each other. Data analysis will occur until there is a clear set of themes within the data which can be understood as a model.
In addition, the research will involve a group of lived experience consults to guide and support the research.
What are the possible benefits and risks of participating?
There are a number of expected outcomes of this study which will be of benefit to participants. The focus on the experiences of those living with a Personality Disorder will allow the voices of an often excluded group to be meaningfully heard. There should be no more than minimal risk from participating in this study. Participants should not experience any distress beyond what is experienced in day-to-day life.
Where is the study run from?
South Essex Partnership University Foundation NHS Trust (UK)
When is the study starting and how long is it expected to run for?
April 2022 to February 2023
Who is funding the study?
Applied Research Collaborative East of England (UK)
Who is the main contact?
Bryony Dalee, bryony.dale1@nhs.net
Contact information
Principal Investigator
Derwent Centre
Princess Alexandra Hospital
Harlow
CM20 1QX
United Kingdom
 ORCID ID |
0000-0003-0145-025X |
|---|---|
| Phone | +44 7581011293 |
| bryony.dale1@nhs.net |
Study information
| Study design | Constructivist grounded theory with participatory research methods |
|---|---|
| Primary study design | Observational |
| Secondary study design | Qualitative study |
| Study setting(s) | Community |
| Study type | Quality of life |
| Participant information sheet | 43075 PIS v3.2 01Nov2022.pdf |
| Scientific title | Investigating the impact of a service user network on the well-being outcomes of individuals living with personality disorder and complex needs: an addition to therapeutic interventions. |
| Study hypothesis | Healthcare systems can expose individuals to risks of avoidable harm, and unwarranted variations in care quality. Though there are notable preconditions for high quality care: funding, infrastructure and staffing to mention a few, the processes and investment into making change needs innovation and investment. In addition, services that support individuals with Personality Disorder have long been insufficient, however, there has been a significant investment by NHSE in service provision for Personality Disorder and Complex Needs across England, and a system-wide transformation currently being undertaken in Essex which encompasses chief investigators role of Service User Network Manager and Facilitator for Personality Disorders and Complex Needs. This research will both invest in collating experience and information around service provision, and match these efforts in making the change happen: advancing, refining and expanding a lacking body of knowledge which includes the design and delivery of new peer-led services. More resources are undoubtedly necessary to tackle the inequalities experienced by this client group, and it is important that the research questions address how best we can move forward within services to tackle this, e.g. by investigating what works, what doesn’t and why. |
| Ethics approval(s) | Approved 22/11/2022, HRA and Health and Care Research Wales (Health Research Authority, Skipton House, 80 London Road, London, SE1 6LH, UK; +44 (0)20 7972 2545; hra.approval@nhs.net), ref: 22/SS/0087 |
| Condition | Personality disorder and complex needs |
| Intervention | In order to understand and conceptualise the collective patterns which contribute to the experience of the Service User Network, and given the lack of current research and literature, this research will use Constructivist Grounded Theory methods (Charmaz, 2000). In addition, participatory research approaches will also be drawn upon throughout, to ensure meaningful engagement and a respectful partnership with the community that the Service User Network serves. Participants will be recruited from attendees of the Service User Network. After consent is established, interviews will be conducted with each participant, exploring their experience of the Service User Network and the factors that have impacted that experience. Consistent with the Grounded Theory approach, further interviews and/or field work will be tailored to investigate the hypothesis emerging as data collection progresses. Interviews will be guided by a few prompting questions (semi-structured), conducted by the Chief Investigator and a member of the consultation team (Expert by Experience). |
| Intervention type | Other |
| Primary outcome measure | Service Users experiences of being a part of the sun will be measured using qualitative interviews. The interviews are semi-structured with 1 pre-determined opening question (Please can you tell us a little bit about your experience of being part of the Service User Network?). Interviews will be analysed using Constructivist Grounded Theory. |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 07/04/2022 |
| Overall study end date | 01/02/2023 |
Eligibility
| Participant type(s) | Patient |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Sex | Both |
| Target number of participants | 12 |
| Total final enrolment | 13 |
| Participant inclusion criteria | 1. The service user must have been accessing the Service User Network for a period of at least 2 months. 2. Participants must be living in the community (i.e not currently inpatient) and must have the capacity to consent to their involvement. There are no other inclusion criteria and the SUN is a service which is already accessed via inclusion criteria (an individual is presenting in line with Personality Disorder, resides in Essex, and is 18 years or older). |
| Participant exclusion criteria | Does not meet inclusion criteria |
| Recruitment start date | 22/11/2022 |
| Recruitment end date | 04/01/2023 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
Lodge Approach
Runwell
Wickford
SS11 7XX
United Kingdom
Sponsor information
Hospital/treatment centre
Hawthorn Lodge
St Margaret’s Hospital
The Plain
Epping
CM16 6TN
England
United Kingdom
| Phone | +44 7939 08588 |
|---|---|
| pauline.young3@nhs.net | |
| Website | https://eput.nhs.uk/ |
"ROR" |
https://ror.org/05v823t63 |
Funders
Funder type
Research organisation
No information available
Results and Publications
| Intention to publish date | 31/12/2025 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | Participants will be sent a copy of the final report. To ensure that everyone who takes part in the research receives a copy of the final report, they will be offered a hard copy as well as an electronic copy. It is a best practice expectation that all research should be registered in a publicly accessible database. This research will be registered on the ISRCTN registry. The chief investigator will own the rights to the study data and the dissemination of the findings through a written report. On completion of the study, the data will be analysed and a Final Study Report prepared. The report will be submitted for publication. All supporting sponsors and consultants will be credited for their involvement. |
| IPD sharing plan | The datasets generated during and/or analysed during the current study are not expected to be made available due to confidentiality of participants. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Participant information sheet | version 3.2 | 01/11/2022 | 26/01/2023 | No | Yes |
Additional files
Editorial Notes
18/01/2024: The following changes were made to the study record:
1. The overall study end date was changed from 04/01/2023 to 01/02/2023.
2. The intention to publish date was changed from 16/01/2024 to 31/12/2025.
26/01/2023: Trial's existence confirmed by NHS HRA.
