Intellectual disabilities (learning disability) Mental and Behavioural Disorders Learning disability
Conditions
Interventions
Current interventions as of 08/09/2021:
Community and education sector organisations that work with groups of people with ID will be asked to identify one established group with an average of 4 to 5 m
narrative therapy, e.g. by separating oneself fro
Sponsors
University College London
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Current participant inclusion criteria as of 08/09/2021: Groups/organisations: 1. In place already (although group meetings may have been disrupted due to the COVID-19 pandemic and associated social restrictions) 2. Intend to continue or restart meeting as a group for =3 further months 3. =3 but =8 members with ID who wish to participate in the intervention 4. Willing to replace 5 of their usual meetings with STORM 5. Have a group facilitator who consents to taking part and who is willing to facilitate the STORM intervention 6. The facilitator is willing to receive training and facilitate the STORM intervention and protocol in either face-to-face or digital form 7. Organisational support to deliver the study intervention Individuals: 1. Aged =16 years 2. Have an ID as defined by an administrative definition 3. A member of an established group for people with ID (educational, activity, social, or self-advocacy focused) 4. Able to complete the outcome measures (with or without support) and engage with the STORM intervention 5. Have access to the internet and a device that can access web meetings, be this via Zoom, Skype, Microsoft Teams, or Google Meet, and where needed, have support to access web based meetings 6. Have capacity to provide informed consent to participation in the study 7. Able to communicate in English Previous participant inclusion criteria: For groups/organisations: 1. In place already, i.e. they are not specifically formed for the purposes of the intervention or the research 2. Intend to continue meeting as a group for at least three further months 3. Have at least four members with ID who wish to participate in the intervention, and no more than ten members to allow for full engagement in group discussions and other STORM activities 4. Willing to replace five of their usual meetings with STORM for the study 5. Have a group facilitator who consents to taking part and who is willing to facilitate the STORM intervention 6. The facilitator is willing to complete two 2-hour training sessions (a mix of on-line and face-to-face training) and to receive 2 to 3 hours of STORM supervision 7. Facilitators will also be expected to be willing to complete the study records, audio record sessions, and to participate in a qualitative interview 4 to 6 months from baseline 8. The organisation which hosts participating groups must have the resources to support the study and must be willing to free up the group facilitator for STORM training and supervision For individuals: 1. Aged 16+ years 2. Have an ID as defined by an administrative definition, in terms of receipt of specialist services for people with ID within the education, social care, third or health sector 3. Be able to complete the outcome measures (with support), attend to short films, and engage in a discussion-based group programme – abilities likely to equate to mild to moderate ID (severity of ID will not be formally assessed as this is too resource intensive) 4. Have sufficient expressive and receptive communication skills in English (reading skills not required) to allow participation in STORM and completion of measures 5. Be a member of an established group for people with ID (educational, activity, social or self-advocacy focused) 6. Have capacity to provide informed consent to participation in the study 7. Provide informed consent to taking part in the study 8. Some individuals whose group is randomised to the intervention arm may not have capacity to consent to
Exclusion criteria
Exclusion criteria: Current participant exclusion criteria as of 08/09/2021: Groups/organisations: 1. Run as part of NHS services 2. Some of their regular members decline taking part in STORM-e and it is not possible to find alternative meeting times to run STORM-e Individuals: Do not provide consent to participate Previous participant exclusion criteria: For groups/organisations: 1. Run as part of NHS services 2. Some of their regular members decline taking part in STORM and it is not possible to find alternative meeting times to run STORM For individuals: 1. Unable to communicate using English (and adaptations to meet their communication needs cannot be put in place for the respective group) 2. Do not have capacity to consent (see above)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Current primary outcome measure as of 08/09/2021: Feasibility and acceptability of STORM-e will be addressed using a qualitative/quantitative (mixed-methods) evaluation of the following: 1. Recruitment of providers of groups for people with ID and of group facilitators: Can sufficient providers and group facilitators be recruited to run 4 STORM-e groups? Can sufficient group facilitators be recruited and trained? 2. Recruitment of participants/groups: Can sufficient participants with ID from a range of settings (educational, social/activity based, or self-advocacy groups) be recruited for the pilot? 3. Adherence: What proportion of groups and participants complete at least three of the five STORM-e sessions? 4. Retention: What proportion of groups and participants are retained in the study to post intervention? 5. Fidelity of implementation: Can facilitators deliver STORM-e with a high degree of fidelity to the programme manual? 6. Acceptability: Is STORM-e acceptable to facilitators and group members? 7. Usual practice (UP): What does UP consist of for young people and adults with mild to moderate ID? How is UP different since the pandemic, with groups meeting online? 8. Feasibility and acceptability of outcome measures: Do participants complete the outcome measures for the study? Do they find the outcome measures acceptable for people with ID to complete? 8. Feasibility of economic evaluation: What is the feasibility of collecting resource use and health related quality of life data from participants? What is the feasibility of collecting data on the cost of the intervention from providers? 9. Recruitment of participants/groups: What are the most effective recruitment pathways to identify suitable groups for people with ID from a range of settings (educational, social/activity based, or self-advocacy groups)? What recruitment rate can be achieved in different settings? What are the characteristics of organisations/groups and participants approached and screened t | — |
Secondary
| Measure | Time frame |
|---|---|
| Current secondary outcome measures as of 08/09/2021: Measured at baseline and post-intervention: 1. Mental wellbeing measured using the Warwick-Edinburgh Mental Well-Being Scale (WEMWBS), a 14-item scale validated for adolescents aged 13+ and adults, with some items simplified in line with other recent studies that have used the scale with people with ID 2. Self-esteem, measured using 6-item version of Rosenberg self-esteem scale (RSES), validated for people with ID 3. Self-Efficacy in Rejecting Prejudice (SERP), a single self-rated item used in our pilot: “At this moment, how confident do you feel about standing up to prejudice?”, rated on a 4-point scale (‘not at all confident’ to ‘very confident’) 4. Reactions to Discrimination (RtD) 4-item subscale of the ID Self-Stigma Scale, measuring emotional reactions to stigma in people with ID 5. Sense of Social Power (SSP): adapted 4-item version of the Sense of Power Scale, to date not yet validated for people with ID All the above scales use 3 to 5-point Likert response scales. 6. We aim to develop a measure of stigma resistance that is sensitive to change and will pilot this during the proposed study. For this purpose, we will develop vignette-based scenarios of stigmatising interactions that people with ID may typically experience, and will ask participants how they would be most likely to respond in each situation, with their responses analysed thematically and also categorised as e.g., social withdrawal, ignoring, educating, or confronting. The scenarios, response formats and methods of analysis will be co-produced with our STORM Expert Advisors Panel, a Patient and Public Involvement (PPI) group. Previous secondary outcome measures: Measured at baseline and follow-up: 1. Mental wellbeing measured using the Warwick-Edinburgh Mental Well-Being Scale (WEMWBS), a 14-item scale validated for adolescents aged 13+ and adults, with some items simplified in line with other recent studies that have used the scale with p | — |
Countries
England, United Kingdom
Contacts
Public ContactKatrina Scior
Outcome results
None listed