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UCL Centre for Intellectual & Developmental Disabilities Research

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Key Strands of our Research

 

  • Development and evaluation of psychological therapies for behavioural and mental health problems at a family/wider system level
  • Health issues associated with ageing in persons with intellectual disabilities
  • Promotion of well-being and evidence based approaches to reducing the stigma associated with intellectual disability
  • Health service research for individuals with intellectual disabilities

The following are some of the current key research projects undertaken by CIDDR staff. Details of all student projects can be found on the CIDDR team page.

Psychological Therapies

Development and evaluation of psychological therapies for behaviour problems, mental health problems at a family/wider system level.

Angela Hassiotis has made the evaluation of interventions and the improvement of evidence based care in intellectual disabilities the focus of her recent work. Within the studies portfolio, there are a number of NIHR funded feasibility and definitive trials for challenging behavior and/or mental disorders in this population. Below are links to current projects and related papers:

1. Individual CBT for adults with mild ID and common mental disorders (feasibility study) http://www.ucl.ac.uk/psychiatry/cbt (manual) https://www.ncbi.nlm.nih.gov/pubmed/23827533

2. Clinical and cost effectiveness of training in Positive Behaviour Support in adults with ID and challenging behaviour (multicentre RCT) http://www.ucl.ac.uk/positive-behaviour-support

3. Clinical and cost effectiveness of group parenting intervention for preschoolers with ID and challenging behaviour (coming soon)

4. Effectiveness of simvastatin for the prevention of dementia in adults with Down syndrome (TOP-COG study) http://www.gla.ac.uk/researchinstitutes/healthwellbeing/research/mentalhealth/research/projects/top-cogstudy/andhttps://www.ncbi.nlm.nih.gov/pubmed/27473843

5. Improvised music therapy for children with autism (TIME-A study) http://www.nets.nihr.ac.uk/projects/hta/1216795

6. Intervention for alcohol misuse in adults with mild ID (feasibility study) https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-015-0629-x

7. Pay more attention: a study of parent and child experience with and without ID in hospital settings http://www.nets.nihr.ac.uk/projects/hsdr/142145


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Ageing

Andre Strydom has a specific interest in intellectual disability syndromes and conditions associated with ageing in in adults with neurodevelopmental disorders including intellectual disabilities, Autism & Asperger syndrome.

Current projects and collaborations include the LonDownS consortium study of Alzheimer's Disease in Down syndrome, and a study exploring copy number variations associated with mental disorders in adults with non-syndromic intellectual disabilities. I am also supervising several PhD students, including Sarah Hamburg who is working on EEG correlates of cognitive abilities and decline in Down syndrome, and Rosalyn Hithersay, who is pursuing fNIRS imaging in Down syndrome.

London Down Syndrome Consortium (LonDownS)

The London Down Syndrome (LonDownS) Consortium is a large, multidisciplinary team, made up from learning disability psychiatrists, human geneticists, developmental psychologists, mouse geneticists and cellular scientists. The main focus of our work is examining the link between Down syndrome and Alzheimer's disease. There is a very high risk for Alzheimer's disease in the ageing Down syndrome population and we are working towards finding out why.

The project aims to explore the cognitive, genetic and cellular factors underlying variation in development, ageing and susceptibility to Alzheimer's disease in both our infant and adult participants and through the use of mouse models. We are also interested in differences in cognitive abilities and brain activity and have designed our assessment batteries to encompass all of these objectives. The Consortium is a large multidisciplinary team made up of clinicians, geneticists, developmental psychologists, mouse geneticists, psychiatrists and cellular scientists.

Lead: Dr Andre Strydom

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Stigma

Katrina Scior and Afia Ali aim to advance the understanding of stigma associated with intellectual disability. Their research focuses on understanding processes involved in self, affiliate and public stigma, their respective consequences, and evidence based interventions to reduce intellectual disability stigma. Current projects and key publications:

Current research

The Standing Up For Myself Project (STORM)

Lead: Dr Katrina Scior

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 social identity theory, CBT, narrative approaches and 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.

Myself and the World

Sophie Colman, a trainee on UCL's Doctorate in Clinical Psychology is developing a measure to assess the extent to which individuals with intellectual disabilities internalise stigma, under the supervision of Katrina Scior.

Previous Stigma research has included:

1.  Lay responses to people with intellectual disabilities in the context of ethnically and religiously diverse societies

Lead: Dr Katrina Scior

Lay people often find the concept of intellectual disability and different terminologies confusing. In parallel they may have no or only very limited contact with individuals with intellectual disabilities and may hold stereotypes that portray them overwhelmingly in negative or tragic terms, rather than as individuals who share a common humanity and whose hopes and aspirations are as diverse as those of people without disabilities.

2. How to effectively challenge intellectual disability stigma

Lead: Dr Katrina Scior

We have mapped what is happening around the globe to raise awareness and combat prejudices and discrimination directed at people with intellectual disabilities, and have identified an urgent need for more efforts in this regard, particularly in countries where disability stigma continues to severely limit the life chances and wellbeing of people with intellectual disabilities.

We are also testing a range of interventions that combine education about intellectual disability with direct and/or video based contact with people with intellectual disabilities, to see whether these can reduce aspects of stigma. Our research focuses on both children and adults in the general population.

In order to ensure that people with intellectual disabilities are resilient to stigma and at the forefront of efforts to tackle stigma, we are currently developing and evaluating a psychosocial group intervention designed to enhance the capacity of people with intellectual disabilities to manage and resist stigma (Contest). The Contest study is funded by the Baily Thomas Charitable Fund.

3. Novel ways to measuring intellectual disability stigma

Leads: Dr Afia Ali and Dr Katrina Scior

We have developed an instrument to measure self-reported stigma in people with intellectual disabilites (Stigma Questionnaire; formerly the Perceived Stigma of Intellectual Disability Scale). This is a 10 item instrument with two subscales. The perceived discrimination subscale measures experiences of being treated unfairly (e.g. 'People treat me like a child'; 'People laugh at me because of the way I talk'); the reaction to discrimination subscale measures emotional reactions to stigma (e.g. 'People make me feel embarrassed'). Items are rated "yes" (score of 1) or "no" (score of 0). The scores range from 0 to 10, with higher scores indicating more stigma. This instrument has also been adapted in South Africa. The Stigma Questionnaire can be downloaded for free from our Resources page.

We have developed a new measure, the Intellectual Disability Literacy Scale (IDLS), designed to assess lay people's ability to recognise typical signs of possible intellectual disability and their beliefs about their potential causes. The IDLS can be downloaded for free from our Resources page.

The limitations of explicit attitude measures (typically questionnaires where the respondent reports on their own attitudes) have been widely recognised. A key limitation that psychologists term 'social desirability' is that humans generally wish to please and tend to avoid saying things they know to be deemed unacceptable by society (and the researcher). We have conducted research exploring the use of implicit attitude measures that aim to access more unconsciously held biases towards members of outgroups.

4.  The impact of self-reported stigma on quality of life, psychological distress, treatment adherence and service use in people with intellectual disabilities

We have examined the impact of stigma and discrimination on health outcomes in people with ID.

Lead: Dr Afia Ali

For publications, please visit the Publication section or see my Iris Profile.

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