Modifying a weight management intervention for people with intellectual disabilities

Lead Research Organisation: University of Sheffield

Abstract

Obesity is a major health concern nationally and internationally. People who are obese are more likely to develop diseases such as diabetes and high blood pressure which affect their quality of lofe and may reduce their life expectancy. People with intellectual disabilities (ID) are more likely to be obese than people in the general population. One reason for this is that interventions to reduce obesity are not always accessible to people with ID because they are too hard to understand and follow. Slimming World (SW) has been shown to help people in the general population to lose weight but we do not know how suitable the SW intervention is for people with ID. This study will work with people with ID to identify how the SW intervention can be changed to make it more acceptable and relevant for people with ID. We will discuss what people tell us with experts from SW and together we will make changes to the intervention so that people with ID can join in with existing Slimming World groups and follow an appropriate and accessible weight management programme. We will also try the intervention with around eight people with ID to test whether it is feasible to run the modified intervention for people with ID, and make further improvements before we decide whether it is sensible to develop a study to test whether the intervention actually helps people with ID to lose weight.

Technical Summary

Obesity is a major public health concern nationally and internationally. There is a higher prevalence of obesity in adults with intellectual disabilities (ID) compared to the general population (39.3% women; 27.8% men with ID are obese compared with 25.1% women;22.7% men in the general population). Interventions shown to be clinically effective at achieving sustained weight loss in the general population are unlikely to be accessible and appropriate to this population because of their complexity. Research is needed to develop and test weight loss interventions designed to meet the needs of this population (recognising communication and literacy needs as well as broader issues of participation and inclusion). The proposed study is informed by the MRC framework and involves both development and feasibility components. The study will adopt a participatory approach to review and where necessary, modify and existing weigh management intervention (Slimming World), for use with adults (age =18) with ID who are overweight or obese (BMI>25). It will explore the feasibility and acceptability of delivering the modified intervention from the perspectives of a range of stakeholders. Only adults with the capacity to consent prior to recruitment. The study will be carried out in collaboration with eight people with ID in recognition of the importance of involving disabled people in the development of services addressing their needs. Outputs from the study will include a prototype of a modified Slimming World (SW) intervention for use with adults with ID who are overweight or obese, a protocol for establishing capacity to consent, a set of measures and procedures for collecting data from participants with ID and briefing notes on the development process to inform similar work on other issues. The study will conclude with an assessment of whether to proceed to a pilot trial made in collaboration with representatives from Sheffield University Clinical Trials Research Unit.

Publications


10 25 50
 
Description Case study in IHAL guidance
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact The WiLD project is used as a case study in guidance for public health staff commissioning or running weight management services and other mainstream health professionals working to support people to lose weight. It is also for family carers, social care staff and learning disabilities professionals. It advises about specific aspects of weight management for people with learning disabilities.
URL https://www.improvinghealthandlives.org.uk/securefiles/170313_1420//Obesity%20RA%20report%20final.pd...
 
Description Oral presentation at European Obesity Summit
Geographic Reach Europe 
Policy Influence Type Influenced training of practitioners or researchers
URL https://www.karger.com/Article/Pdf/446744
 
Description PHE poster
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://phe.multilearning.com/phe/2016/eposter/137984
 
Description Slimming World Report
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact We delivered a project report to Slimming World detailing the results of our evaluation of the modified intervention which showed that people with learning disabilities could lose weight by using Slimming world with reasonable adjustments. Slimming World are preparing to launch Slimming World with reasonable adjustments for people with learning disabilities nationally in Summer 2017. This launch will include the materials and resources created during the WiLD project and it will improve accessibility and utility of Slimming world for people with learning disabilities nationally.
 
Description Slimming world research team 
Organisation Slimming World
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Private 
PI Contribution We have collected and analysed qualitative data from focus groups and individual interviews to provide recommendations about how to modify the Slimming world intervention to improve services for people with intellectual disabilities. We have run a feasibility study to test the accessibility and utility of the prototype with a view to providing further recommendations to inform a future revision.
Collaborator Contribution Slimming world have hosted a survey to identify participants for individual interviews. They have developed prototype materials in line with our recommendations and provided free access to their intervention for participants in the feasibility study. We work closely with members of their nutrition team whose time is funded by Slimming World.
Impact Prototype of Easy Read written materials to support people with intellectual disabilities to follow the Slimming World intervention. Prototype information sheet for carers of people with intellectual disabilities to support access to the Slimming world intervention
Start Year 2014
 
Description Supa Slimm team 
Organisation Leeds Teaching Hospitals NHS Trust
Department Leeds Institute of Health Sciences
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Multiple 
PI Contribution We collaborated on a bid to the HTA programme for a pragmatic multi site RCT comparing the modified Slimming World intervention, developed in the WiLD project funded by this MRC PHIND grant, with usual care. This was to be a definitive trial of the modified intervention. I was a co- applicant on this bid and PI for the Sheffield arm of the trial and for a process evaluation across all sites.
Collaborator Contribution Dr Louise Bryant was chief investigator and led the bid which incorporated methods for recruiting people with intellectual disabilities that were developed and tested by the team at Leeds University, with the modified intervention produced by the WiLD project.
Impact We submitted a full application to the HTA programme for £2,190,000 which was unsuccessful This was a multidisciplinary collaboration with a commercial organisation - Slimming World. Other collaborators included Leeds Clinical Trials Research Unit, NHS Leeds, Salford Royal Foundation NHS Trust, Central Manchester University Hospitals NHS Foundation Trust, Wakefield Council and The Clinical Research Network Yorkshire and Humber. Disciplines included: Medical Psychology, Health Services Research, Nutrition, Exercise Science and General Practice.
Start Year 2015
 
Title Modified Slimming World 
Description We are working with Slimming World to modify their weight management intervention to improve accessibility, acceptability and utility by people with intellectual disabilities. We have produced Easy Read and simplified prototype materials to support the intervention and are in the process of completing a feasibility study using the modified intervention. Principle source of funding MRC PHIND award 
Type Preventative Intervention - Behavioural risk modification
Current Stage Of Development Initial development
Year Development Stage Completed 2016
Development Status Under active development/distribution
Impact Raised awareness of the needs of people with intellectual disabilities amongst senior staff at the Slimming World organisation who are now planning to cascade training and support to front line staff in accordance with the findings from the feasibility study. 
 
Description Autism Plus 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Talk sparked discussion and further questions to address in next meeting

Members of the group expressed interest in further involvement in the research, planned a second meeting which was subsequently postponed until later this year
Year(s) Of Engagement Activity 2014
 
Description Burton Street Foundation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact We visited this service to raise awareness of the project and recruit potential participants
Year(s) Of Engagement Activity 2015
 
Description Fitness Fanatics 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Talk raised awareness of the work we are doing amongst individuals who might ultimately benefit from the work

Made contacts with service users, carers and staff working for third sector organisations who may be willing to disseminate findings locally and to be involved in planning future bids
Year(s) Of Engagement Activity 2014
 
Description Friday Aden Group 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Raised awareness of the project amongst people who might ultimately benefit from the work

Asked to visit again with further updates on project progress.
Year(s) Of Engagement Activity 2014
 
Description Heeley Farm 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Study participants or study members
Results and Impact Talk raised awareness of the work amongst key stakeholders - service users and providers
Three participants were recruited from a larger group for a weight management intervention. The organisation was supportive of participants' attempt to manage their weight and agreed to change menus in their café (open to the public) to include healthier food choices.

Recruited one person to the project steering group.
Member of research team became a Trustee of the charity holding the meeting after attending the meeting and learning about the work of the charity.
Year(s) Of Engagement Activity 2014,2015,2016
 
Description Improving the Health of People with Learning Disabilities workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/parliamentarians
Results and Impact Discussion about setting research priorities and ways to overcome difficulties in consent process including assessment of mental capacity

Plan to set up a working group to continue discussion about these with a view to influencing NIHR research priorities around learning disability
Year(s) Of Engagement Activity 2014
 
Description MenCap 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Supporters
Results and Impact Talk raised awareness of the work we are doing with regional branch of MenCap ie. National third sector organisation

Impacts included access to number of different stakeholders group and publicising the work we are doing across the region
Year(s) Of Engagement Activity 2014
 
Description Press Release 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact We issued a press release via Sheffield University's media team to raise awareness of our research and to recruit interested participants
Year(s) Of Engagement Activity 2015
 
Description SHSCT 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Talk and accessible activities sparked enjoyable discussion

Minimal impact beyond awareness raising with staff and service users who belong to the group of people we hope may ultimately benefit from this work
Year(s) Of Engagement Activity 2014
 
Description Sheffield Voices 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact We visited the group to present the project, raise awareness of our work, identify interested participants and get suggestions for further organisations to visit for recruitment.
Year(s) Of Engagement Activity 2015
 
Description St Wilfreds 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact We visited the organisation several times to publicise the research within the organisation and to recruit their clients to the study.
Year(s) Of Engagement Activity 2015
 
Description University Press Reslease 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact University press release picked up by relevant national media

Contacted by TV researcher working for channel four production company with a view to making a documentary about our work
Year(s) Of Engagement Activity 2014