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Research on Intellectual Disability Stigma

Our work is based on a firm conviction that intellectual disability stigma needs to be challenged at multiple levels.

levels

To this end, alongside our research focused at the intrapersonal, familial and interpersonal levels, we advise relevant bodies on how to achieve structural change. Organisations we have provided such advice to include: the Royal Mencap Society, Special Olympics, and the United Nations Committee tasked with overseeing the Convention on the Rights of Persons with Disabilities (CRPD).

We have also published a call for more action to tackle intellectual disability stigma aimed at a global audience: (16)00060-7/fulltext 

Current Research Projects


1. The STORM programme

STORM Manual Cover

This project consists of the development and evaluation of a new psychosocial group intervention designed to increase the capacity of people with intellectual disabilities to manage and resist stigma. The intervention developed as part of this project is called STORM (Standing Up For Myself). It draws on cognitive behavioural and narrative approaches, as well as liberation psychology in aiming to support people with intellectual disability to cope with and stand up to the stigma they often have to face on account of having an intellectual disability.

An initial pilot of the STORM programme was funded by the Baily Thomas Charitable Fund and completed in September 2018.

STORM Pilot Project Team
Members of the STORM Pilot Project Team at a celebratory event in September 2018 concluding the pilot project.

 

Adaptation and Pilot study of Digital STORM

We are currently conducting an adaptation and pilot study of STORM for digital delivery, funded by the National Institute of Health Research (NIHR) Public Health Research Programme (project number 17/149/03). This study is being conducted in partnership with Mencap and the Foundation for People with Learning Disabilities.

The Covid-19 pandemic and associated social restrictions have changed the way in which organisations are delivering services and support, including to people with intellectual disabilities. In response to lockdown and the need for distancing, services have largely suspended face-to-face meetings and have supported their members through virtual methods such as web-based video meetings. Many organisations anticipate that they may continue to use virtual methods for the foreseeable future, with self-advocates and facilitators of groups claiming that some prefer virtual methods as it provides people with ID the opportunity to continue to interact with others in a familiar and safe environment. Virtual methods have removed some of the barriers faced by some people attending face-to-face groups and accessing support such as travel anxiety, reliance on support and lower motivation to attend in the winter months.

The immediate need for and importance of STORM to help people with ID to discuss negative experiences with their peers and resist stigma has been highlighted during this time by self-advocates and ID third-sector organisations. Please refer to this UCL Unit for Stigma Research blog post for further insight into the experiences of Covid-19 and the associated restrictions for people with learning disabilities.

Digital interventions are increasingly available to the general public and are widening access to healthcare. People with ID are mostly excluded from e-health provision and related research and are excluded from the growing benefits that digital health/psychosocial interventions have to offer. By adapting STORM to digital STORM, we are contributing to much needed research on the use of digital interventions with people with ID.  Digital STORM will potentially allow more groups of people with ID to develop stigma resistance and to improve their self-esteem and mental wellbeing.  This is in line with the long-term goal to offer STORM as a widely and freely accessible public health intervention.

Read more about this project

 

2. Other Projects

Other projects under the umbrella of UCLUS seek to advance our understanding of intellectual disability stigma, its impact on people with intellectual disabilities and their families, and effective ways to challenge stigma faced by people with intellectual disabilities. Below is a list of researchers and current projects they are leading:

Nikolaos (Nikos) Sarras

Nikos is a trainee clinical psychologist at UCL. For his thesis, he is exploring what enables self-advocates to resist stigma in their everyday lives and what can get in to way of resisting negative attitudes and behaviours. This project is supervised by Katrina Scior.

Abigail (Abi) Goldsmith-Sumner

Abi is a trainee clinical psychologist at UCL. For her thesis, Abi is developing a measure of stigma resistance in individuals with intellectual disabilities, under the supervision of Katrina Scior and Andrew Jahoda (Glasgow Univ.).

3. Past Projects

Rachel Ransley

How parents of children with intellectual disabilities and/or autism respond to and manage stigma they may experience

Rachel completed this study in 2020 as part of her Doctorate in Clinical Psychology thesis.

This study explored how parents of children with learning disabilities and/or autism manage stigma they may experience in their daily lives, in relation to their child's disability. ‘Affiliate stigma’ occurs when associates (e.g. parents, other family members, partners and friends) of a person who is stigmatised in society find themselves the targets of Stigma (i.e. negative stereotypes, prejudice and/or discrimination). At times these associates internalise stigmatising attitudes and beliefs. Recent research by UCLUS (Mitter, Ali, and Scior, 2018, 2019) shows that parents of children with learning disabilities and/or autism are often vulnerable to affiliate stigma and can internalise stigmatising beliefs which can affect their view of themselves, their mental health and well-being.

By exploring this topic, we gained an understanding of how parents respond to stigma associated with their child's disability in the moment, what strategies they may use to resist stigmatisation, and how they build resilience to others’ negative responses. It is hoped that sharing the insights from this research will help to support other parents of children with learning disabilities and/or autism in resisting the negative effects of stigma. 

Please contact the lead researcher if you would like further information about this study and its findings: rachel.ransley.14@ucl.ac.uk