Award Title: toothPASTE - emPowering fAmilies of young children with autiSm to esTablish good oral hEalth habits
Funder: Department of Health and Social Care

Abstract: BACKGROUND:Preventing tooth decay is the top dental research priority. In England, approximately a quarter of children with autism have decay by five-years-old. Frequently their dental treatment is provided under general anaesthetic at significant costs to the NHS, morbidity to the child and impact on family-life.   Tooth decay is preventable. National guidelines recommend twice-daily toothbrushing with fluoride toothpaste and limiting sugar consumption. Good habits in early childhood provide lifelong protection from decay. For families of children with autism, however, establishing good habits can be complex because of communication, altered sensitivity and rigid behaviour patterns. Attending the dentist is challenging and often an unsuitable setting for meaningful support.  Frequently families feel overwhelmed, isolated and uncertain who to ask. While families may receive support from early-years services, oral health is rarely discussed and professionals are uncertain of what advice to give.     AIM: To empower families of young children with autism to establish good oral health habits      OBJECTIVES:   STAGE ONE (Month 1-12) - Understanding the problem and context in West Yorkshire   [1A] A scoping review of the literature to identify the barriers and facilitators to good oral health behaviours.   [1B] Qualitative interviews with families of children with autism (n=25) to explore their current oral health behaviours, the challenges involved, their experiences of navigating early-years services and ideas of support.   [1C] Qualitative interviews with professionals working in health, education and care services (n=30) to explore their current practice, their opportunities, capabilities and motivations for providing oral health support and their views on the design of such support.  Using framework analysis, combined with the Theoretical Domains Framework and COM-B model, we will synthesise our findings to understand the barriers and facilitators to good oral health behaviours. We will map out the support available across different local authority areas, identify commonalities and opportunities for new or enhanced oral health interventions.  STAGE TWO (Month 12-18) – Development of the toothPASTE intervention   With our Patient and Public Involvement panel, professionals and stakeholders as equal partners, we will co-design the toothPASTE intervention. Using a series of workshops and participatory activities (Experience-Based Co-Design approach), we will finalise the toothPASTE intervention prototype, including content and format, who will deliver it, when, how often and a training package to enable delivery. To understand the mechanism of action for toothPASTE, we will iteratively tailor a pre-existing oral health logic model to reflect the study findings and refine the theory of change.     Impact and dissemination: Development of the toothPASTE intervention ready for feasibility testing, before progressing to a definitive study with the aim of reducing tooth decay in children with autism.  Our findings will inform commissioning within West Yorkshire and national commissioning guidance for children and young people in residential special educational settings.  Our dissemination strategy is tailored to families, policymakers, commissioners, stakeholders and professionals. Outputs include a short video summarising our results, support maps for children with autism living in different local authorities, study website, social media, conference presentations and publications submitted to high impact academic journals.

Lay Abstract: Why is this research important?   Tooth decay is a major health problem. A quarter of five-year-olds have tooth decay. For children with autism, especially those with little or no verbal communication, tooth decay can lead to self-harm, impaired sleep and disrupted routines. Children with autism find it more difficult to go to a dentist or accept dental treatment. Frequently their dental treatment is provided under general anaesthetic.       Tooth decay is preventable. Twice daily toothbrushing with fluoride toothpaste and limiting sugary foods and drinks helps prevent tooth decay. These good habits should start in early childhood. For families of children with autism, establishing good habits can be complex, owing to extra challenges, such as communication, altered sensitivity and rigid behaviour patterns.      What we plan to do:   We will work with families of young children with autism and the professionals who care for them. Together we will explore the barriers and facilitators to good oral health habits and design a support package. This package will help families to be confident in looking after their child s teeth. This study will identify what support they need, who could provide it and the best times to provide support.       Study plan:   This research study has two stages:    Stage 1: To find out what advice families currently receive about looking after their child s teeth; what works well and not so well. We will search for published research studies and talk to families and professionals.  Stage 2: We will work with families and professionals, to develop a support package that they would be pleased to use and would empower families to look after their child s teeth.      Patient and Public Involvement (PPI):   Families of children with autism have been involved from the start of the study. They have identified this as an important topic and shaped the design of the study to ensure it helps families. Nikki Pickles, a parent of a child with autism and family support coordinator for a local autism charity, has agreed to lead our PPI group. Nikki will collaborate with other families throughout the study.      Sharing our findings:   We will summarise our results in a short video. Two autism charities based in West Yorkshire will share the video and our findings on their social media pages. This allows families who have not been involved in the study to learn about it. We will work with professionals, the National Autistic Society, Autistica and government bodies to publicise our findings and discuss future plans. For professionals, we will present the results at conferences and in publications.      Outcome:   We will test the support package in a feasibility trial. This will check that it is acceptable to families, feasible to professionals and has the potential to prevent decay.

Research Activity Codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health Categories: ORAL AND GASTROINTESTINAL;MENTAL HEALTH