Title: Development of a toolkit to help parents/carers manage feeding problems in autistic children
Funder: Department of Health and Social Care

Abstract: Background Autism is a common complex condition affecting social communication. Many autistic children have feeding problems, typically eating a limited range of foods. Feeding problems affect quality of life, health and development. They lead to lifelong poor diets, which contribute to the 18-year shortened average life expectancy of autistic adults.Research suggests that parents are often unsure when to or whether to seek help. When they do, local provision of help is often lacking. A toolkit could offer a tailored, multi-component, early intervention to support parents. It would be accessible and scalable. Research questionInterventions for feeding problems in autistic children. What works, for whom, when, and why? AimTo develop an online tool to help parents/carers manage feeding problems in their autistic children. Objectives To conduct a realist review and construct programme theory(s) To conduct a realist evaluation via interviews of stakeholders and refine the programme theory(s) To co-create a blueprint of a toolkit MethodsMedical Research Council guidance on developing complex interventions will be followed via three work products (WP): Realist review: literature search and analysis using realist theory of logic to construct programme theory(s) Realist evaluation: interviews of stakeholders (autistic young people and adults (experts), parents of autistic children (parents), and professionals who help parents manage feeding problems (professionals)), analysis of verbatim transcripts using realist theory of logic to refine programme theory(s) Co-creation of the toolkit blueprint: behaviour change theory applied to the programme theory(s) will generate candidate components for the online tool. A blueprint (a detailed textual outline) will be co-created. A Participatory Research team of experts, parents and professionals will be involved in each WP. Consensus will be reached by asynchronous Nominal Group Technique. An advisory group of experts and parents will ensure that the project is relevant, respectful and accessible. Timelines for delivery Realist review - month 12 Realist evaluation and programme theory(s) - month 20 Blueprint - month 26 Anticipated impact and dissemination Findings of each step will be disseminated via journal publications, conferences and social media. Further funding will be sought to develop, test and refine a prototype, conduct economic analyses, then finalise a toolkit ready for NHS roll-out. The toolkit will likely be delivered via a website or app. Parents will view content (videos, written content, short courses) tailored to scores on interactive questionnaires, then set goals, get rewards for reaching them, and access peer support via discussion forums. Tailored signposting to other help eg GP will be provided where necessary.The toolkit would fill a gap in early support for autistic children and families. It could generate big data and enable factional testing of new interventions. It could improve quality of life and diet quality, and reduce longer-term morbidity and mortality on a large scale.

Lay abstract: What is autism and what are feeding problems? Autism is a condition affecting how people see the world and how they behave. Feeding problems are problems with eating such as only eating a few kinds of foods.What are the aims of this project? To develop a toolkit. It will help parents/carers help their autistic children with their feeding problems.Why is the project important? Many autistic children have feeding problems. Feeding problems are stressful for them and their families. They can lead to a poor diet. Poor diets can affect a child's health and learning. They can lead to mental and physical health problems, or make existing problems worse. Poor diets are one reason autistic people often die earlier than non-autistic people. Research suggests that parents are often unsure when or if they should ask for help. When they do ask for help, they may find that there is no help for them from their local services. A toolkit could help. It could provide the right support for the right people anywhere and anytime.What are we going to do? We will develop a detailed written plan of what we want the toolkit to include. This toolkit will need to meet the needs of children and parents with many different issues. It is a 'complex intervention'.A team will help with each step of the research, called the Participatory Research (PaG) team. It will consist of three each of: autistic young people and adults (experts) parents of autistic children (parents) professionals who help autistic children with feeding problems (professionals) We will follow established steps to develop a complex intervention: Step 1: We will search journals and guidelines to see what others think helps with this issue, and why. Step 2: We will ask other people what they think helps with this issue. We will ask about 50 experts, parents, and professionals. We will draw diagrams to show what helps autistic children with feeding problems and why. Step 3: We will compare the diagrams from step 2 to behaviour change theories. Behaviour change theories explain what helps people change. From them, we will have ideas for what will work in the toolkit. We will write a detailed plan of the contents of the toolkit. What will the tookit be like? We imagine the toolkit will be available on a website or app. Parents will answer questions about common problems like sensory issues, or anxiety. They will watch videos and read about things that might help their child. What they see will depend on the answers they gave about their own child. Parents will write goals for themselves to make changes and get reminders. They will be able to talk to other parents in online forums. The toolkit will let parents know when to seek more help e.g. from their GP.How will the public and patients be involved? As well as the PaG team, we will have a public and patient involvement (PPI) advisory group. The PPI advisory group will be both experts and parents. They will ensure that the project is relevant, respectful, inclusive, and accessible.What happens next? We will tell other researchers and the general public about our project results. We will write social media posts, and articles in journals. We will talk at research conferences, and do webinars. We will apply for more funding to finish the toolkit, test it with parents and further improve it. We hope the toolkit will be used by the NHS to improve the lives of autistic children and their families.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH