Neurodevelopmental and Intellectual Disabilities

• Intensive Support Teams (IST-ID) Study

  The IST-ID study, led by Professor Angela Hassiotis, University College London  aims to evaluate the clinical and cost-effectiveness of intensive support teams for adults with intellectual disabilities and challenging behaviour. It is funded by the NIHR. Dr Taggart is a co-PI on this project.

• DESMOND-ID: Self-management of Type 2 Diabetes in adults with learning disabilities: A Randomised Controlled Trial 

  We have received funding from the National Institute for Health Research (Health Technology Assessment (HTA) programme) of £2.2m from Sept 22 – Aug 25 to explore whether a diabetes education programme (DESMOND-ID) tailored specifically for people with intellectual disability can improve self-management of Type 2 diabetes compared to usual care?

  Background to the research: People with intellectual disabilities are more likely to develop Type 2 Diabetes. They tend to develop it at a younger age and are less likely to have access to appropriate support that would help them to manage the condition. This may make it more likely that they will have other health problems, such as heart or kidney disease and strokes, and die younger.

  Aims: We want to find the best way to help people with a learning or intellectual disability who have Type 2 Diabetes. We will test whether providing some structured education around managing their diabetes and maintaining healthier lifestyles (diet, exercise) helps people with intellectual disabilities to manage their blood sugar and to stay healthier in the future.

  What are we going to do? We have developed an education programme called DESMOND-ID, which is about diabetes and is suitable for adults with intellectual disabilities and their carers/partners/advocates. The programme lasts 7 weeks, two and a half hours per week, followed by two booster sessions at 3 and 5 months. The adult with intellectual disability and their carer/partner/advocate is encouraged to attend together. The programme supports people to better manage their diabetes. We have already done a small study which showed that the programme can be delivered and is acceptable to service users and carers. We now need to do a larger research study to find out if our programme brings about health benefits for adults with intellectual disabilities who have Type 2 Diabetes. For example, we want to see the effects on people’s diets, physical activity, and diabetes control (blood sugar).

  To test the programme, we will conduct a randomised trial. We will recruit 450 adults with intellectual disabilities who have Type 2 Diabetes, from Northern Ireland, Scotland, and England (Leicestershire). With their permission, half will be randomly chosen to receive the diabetes education (DESMOND-ID) while the others continue with their usual care. We will measure everyone’s blood sugar (HbA1c) when they are recruited and twice more later in the study. We will then compare the results for the people allocated to the programme and those in the control group. We also compare other things between the groups, such as blood pressure, cholesterol, weight, and health and well-being measures; and carry out an economic evaluation to see if DESMOND-ID is good value for money.

  Our study has two stages and will last four years. The first stage will be a pilot trial to check that enough people will join the study. If successful, we will move to the second stage, the main trial.

  Patient and public involvement: CAN, a local intellectual disability charity in Northern Ireland, has already helped us to develop this proposal. We also did a survey with 38 adults with intellectual disabilities and Type 2 Diabetes and used their answers to design the study. We are grateful for their committed and ongoing support, and we will continue to work closely with our PPI stakeholders (CAN, Diabetes UK, Mencap).

  Dissemination: Our PPI group will help us to disseminate the results of this study nationally to service users, families, and staff. We will work with Diabetes UK to influence policy and practice. If DESMOND-ID is effective, we will do our best to help it become standard practice for people across the UK.

• Personalised treatment packages for adults with learning disabilities who display aggression in community settings (PerTA-LD)

  The PERTA-LD project, funded by the NIHR and led by Professor Angela Hassiotis, University College London, aims to develop and test in a randomised controlled trial, a personalised treatment package for aggression for adults with learning disability. Dr Taggart is a co-PI on this project.

• SuSSD (Supporting and Understanding Speech Sound Disorder)

  SuSSD (Supporting and Understanding Speech Sound Disorder) is an online resource that was co-produced with speech and language therapists (clinicians and managers) as part of Natalie Hegarty's PhD project (Hegarty, Titterington, McLeod and Taggart 2018). It is currently managed by Dr Jill Titterington with support from Ulster University’s Creative and Campaign Services.

  SuSSD provides speech and language therapists (SLTs) with a clinical decision making tool to support appropriate selection of one of three possible interventions for children with consistent phonological impairment (conventional minimal pairs (Weiner 1981), multiple oppositions (Williams 2000), and the complexity approach (Gierut 1989, Gierut and Champion 2001)).

  The rationale for the development of this online resource was driven by findings from an online survey (Hegarty et al. 2018) highlighting the gap between research and practice for SLTs managing children with phonological impairment across the UK.

  This gap was further investigated in a series of focus groups with SLTs (NHS health service provision) identifying barriers and facilitators to evidence based practice for children with phonological impairment (Hegarty et al. 2020). SLTs reported the need for an online tool to support them with their clinical decision making and which would provide them with step-by-step guidance for intervention protocols (including dosage), and links to resources/materials.

  SuSSD was the output of co-production work between the researchers and specialist SLTs experienced in providing intervention for children with phonological impairment (Hegarty et al. 2018). At this stage, three direct approaches to intervention for children with phonological impairment are included in the resource which is undergoing constant review and development.

• Walk Buds: A walking program for children with intellectual disabilities in schools 

  We have received funding from the Baily Thomas Charitable Fund, London of £96,000 from (sept 22 – Feb 23) to examine whether it is possible to conduct a clustered randomised controlled trial to evaluate whether ‘Walk Buds’ is effective in increasing physical activity, physical fitness and emotional wellbeing in 9-13yr old children with intellectual disabilities.

  ‘Walk buds’ is a school walking intervention that promotes physical activity in children with intellectual disabilities (9-13yrs); and was co-produced with the teachers, parents and children. Promoting activity levels in children is important for their health. We think that if children have an older peer to motivate and support them that this may promote activity. We want to test whether Walk Buds works schools, that is can it be supported by the teachers and are parents willing to have their child participate in the intervention. We will collect measures on physical activity and wellbeing to find out if the early findings indicate whether a larger trial can be undertaken.

• Trauma Informed Care for adults with intellectual disability

  McNally, P. (2022) A framework for the implementation of trauma informed care in residential services for adults with a learning disability.

Reports

• Coronavirus and people with learning disabilities 

  Coronavirus and people with learning disabilities: Implications for Policy and Practice Webinar and Supporting Reports.

• International Guidelines on the Management of Type 2 Diabetes in People with Intellectual Disability 

  Developed by Dr Laurence Taggart, this project explores reasonable adjustments in the management of Type 2 Diabetes in Adults with Intellectual & Developmental Disabilities.

  The report outlines clear and tangible guidelines for health, disability, social care professionals, and family carers that provides significant improvements in patient care and experience.