Title: Development of a digital health intervention to support parents of children with Traumatic Brain Injury to deliver physiotherapy
Funder: Health Education England

Abstract: Background Traumatic Brain Injury (TBI) is the leading cause of death and long-term disability for children and young people (CYP) in the UK. NHS England estimate that 35,000 new cases of TBI lead to hospitalisation for those aged 2 meters. Over two-thirds of incidents occur on the road and at home. The short and long-term needs of CYP following TBI are very complex. Physiotherapy is a core element of neurorehabilitation and considered essential within best practice. CYP who sustain a TBI may have lifelong deficits requiring provision of long-term neurorehabilitation delivered daily to support functional improvement through neuroplasticity (reorganisation of neural networks within the brain). Evidence shows that family-based physiotherapy, led by parents at home, results in statistically significant improvements in motor function. Parents report that delivering home-based physiotherapy is difficult and that current methods used by NHS physiotherapists to support them are inadequate. Parents have proposed the use of technology to better support home-based physiotherapy. Aims: To identify factors in the published literature known to influence parents' adherence to a home-based physiotherapy programme To seek the first-hand experiences of parents and physiotherapists relating to parental adherence to a home-based physiotherapy programme To use theory and evidence to specify the contents and features of the intervention To develop an intervention prototype and refine this based on user feedbackObjectives: Carry out a systematic review to identify known barriers and facilitators that influence parents' adherence to a home-based physiotherapy programme and the underlying theoretical constructs of behaviour (related to Aim 1) Elicit views from parents and physiotherapists about influences on parental adherence and content of the proposed intervention (related to Aim 2) Specify content and features of the intervention based on theory and evidence, design an intervention prototype and conduct early testing and refinement (related to Aims 3 and 4)Methods In order to address the objectives, the Medical Research Council's framework for developing complex interventions has been used to guide the development of three work packages (WP); WP1 - Systematic review to identify barriers and facilitators of parental adherence to a home-based physiotherapy programme for their child WP2 -h; A qualitative study of the views of parents and physiotherapists about influences on parental adherence to a home-based physiotherapy programme WP3 -h; Design, early user testing and refinement of a prototype interventionTimelines for deliveryThese three work packages will be delivered over four years within a part-time PhD fellowship. Anticipated impact and dissemination This research will develop a working prototype intervention and form the basis for future feasibility testing, randomised controlled trials and implementation, helping to inform policy and practice. Three open access peer-reviewed publications will be published during the fellowship. Dissemination will be undertaken through international, national and local conference presentations. Newsletters will be produced for professionals, the public and stakeholder groups, with additional dissemination of key findings through online and social media platforms.

Lay abstract: Why is this research needed? Traumatic Brain Injury (TBI) is damage to the brain from a sudden external force, such as a car crash or fall. NHS England estimate that 35,000 children aged under 16 years are admitted to UK hospitals annually with a new TBI. TBI is the leading cause of death and disability among this age group in the UK. Children that are admitted to hospital following a TBI and survive often require rehabilitation from physiotherapists. The aim of physiotherapy is to help the child to regain physical skills such as standing and walking, whilst learning new or modified ways of doing day-to-day activities. Once home from hospital many children will need ongoing physiotherapy, however accessing appropriate support can be challenging. Parents play a very important role in supporting improvements for their children by delivering physiotherapy at home (known as a physiotherapy programme). Research shows that rehabilitation which is delivered by family members, particularly parents, leads to significantly greater improvements than rehabilitation delivered by therapists alone. Within the NHS, there is currently no consistent way that physiotherapists train or support parents to deliver physiotherapy at home. Often parents are provided with generic leaflets containing exercises, but report that they are not being given the necessary support to deliver a physiotherapy programme at home. Parents have suggested that the use of technology would be helpful to support them. The aim of this research is to develop a purpose-built digital product (including a website and smartphone app) to support parents to deliver a physiotherapy programme once their child returns home from hospital following a TBI. What will this research find out? It will find out what is needed to support parents to deliver physiotherapy at home, how this support can best be delivered and what the digital product will consist of. What will this research involve? This research has three parts. Firstly, I will review published research to understand what is already known about supporting parents to deliver physiotherapy at home. Secondly, I will ask parents and physiotherapists about their experiences and thoughts about what would help delivery of a physiotherapy programme at home. These findings will be combined with the findings from the published research to understand how to support parents. Finally, an initial (prototype) version of the digital product will be developed for parents to then review and offer feedback. How will patients and the public help guide this research? To date, five parents of children who sustained their TBI below the age of 16 have supported the development of this research by reflecting on challenges and what would have helped them to deliver physiotherapy at home. One of these parents will continue to work with me and I will identify a group of additional patients and public to help guide my research. For example, the group will use the results from the published research to help develop questions to ask parents and physiotherapists about their experiences. The group will also help to summarise research findings, decide the most important ways to support parents and consider what will be included in the final product. How will the findings be shared? The findings will be shared with health professionals, patients and the public throughout the research, through newsletters, public events and online. The findings will be published in research journals which will be 'open access' so that everyone who wants to access them can do so free of charge. I will produce evidence summaries for clinical practice, policy and for parents. The findings will be shared with professional groups of physiotherapists at talks and conferences locally, nationally and internationally.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL