STORM

The Standing up for Myself (STORM) psychosocial group intervention for young people and adults with intellectual disabilities - feasibility study.

Background

Someone is said to have a learning disability - or intellectual disability (ID) - if they have a reduced ability to understand new or complex information and to learn new skills, and a reduced ability to cope independently, which started before adulthood.

People with ID are more likely to experience poor physical and mental health and on average die 15 to 20 years younger than the general population. This is not simply due to their ID or related medical conditions, but in large part to being more likely to experience low incomes, unemployment, poor housing, social isolation and loneliness, bullying and abuse.

A recent report concludes that to improve lives and health outcomes for people with ID, more needs to be done to reduce stigma (negative stereotypes, prejudice and discrimination).

Stigma

Stigma has been linked to lower self-esteem, quality of life, and mental health, including for people with ID. Efforts are being made to reduce ID stigma within society and among specific groups, such as health care providers.

However, efforts to empower people with ID themselves to challenge stigma are lacking. We have developed Standing up for Myself (STORM), a new group-based programme to address this gap.

Study design

STORM is designed for people with mild to moderate ID aged 16+ and seeks to give them the means to challenge stigma in their everyday lives. It consists of four 90-minute group sessions and a booster session and involves a range of activities, including watching films of people with ID talking about their experiences of prejudice and bullying, group discussions, and planning how to stand up to prejudice and discrimination in everyday life.

STORM is delivered by staff in charities, colleges and other services that run groups for people with ID. Staff receive training in how to deliver STORM, how to look out for possible signs of distress in STORM participants and support them, and ongoing support (supervision).

So far, we have developed STORM and piloted it with ten groups involving 67 people with ID. Feedback from group members and staff who led STORM groups has been very positive and indicates a great need for and interest in this intervention. We found initial positive effects of STORM on group members' self-esteem, mental health and confidence in challenging stigma.

Feasibility trial

We are now completing a feasibility trial of STORM. We will ask 16 community organisations across South East England who run groups for people with ID to take part in the research. Of the 16, eight will be chosen at random to deliver STORM to one of their groups. The other eight (the control group) will not get STORM and will carry on with their usual group meetings. In total, we expect about 104 people with ID will take part in the research.

We will examine how easy it is to recruit groups and participants, how many drop out, and how good facilitators are at delivering the sessions as they were trained to. We will also assess whether participants are willing and able to complete all outcome measures and whether STORM appears to improve mental wellbeing, self-esteem and confidence in standing up to stigma.

STORM was developed with close input from people with ID and staff who run groups for people with ID. In the new research, self-advocates with ID and staff from three organisations who have worked on STORM already will be closely involved.

Results due to be published June 2023.