Investigating Feeding Outcomes and Improving Patient Care for Children with Long-Term Ventilation

Research question/s: How do NHS services currently support children aged 0-5 years with feeding problems and long-term ventilation (LTV)? What are the types and impacts of these feeding problems, and how can home-based feeding support be improved for these children? Background: The number of children receiving LTV in the UK has nearly tripled in the past decade. These children commonly experience feeding difficulties at home, yet there is limited understanding of the nature of these problems, their impacts on families and how current NHS services respond. Without this knowledge, it is difficult to improve and optimise patient care and services. By synthesising evidence across these issues, we can effectively determine service recommendations to optimise home-based feeding support for children and families. Aim: Explore how UK services support children aged 0-5 years with feeding difficulties at home, investigate the nature and impact of these difficulties, and collaborate with stakeholders to develop evidence-based service recommendations. Objectives: 1. Identify current UK service provision, policies and clinical practices that support children requiring LTV aged 0-5 years with feeding difficulties at home. 2. Characterise feeding difficulties in these children and explore the psychosocial impacts on families at home. 3. Work with key stakeholders to identify and prioritise services recommendations to enhance home-based feeding services for these children. Methods: 1) Environmental scan (months 1-13): A scoping review will identify relevant policies, guidelines and protocols about home-based feeding support for children receiving LTV in the UK. I will distribute a stakeholder survey to gather information from acute and community health professionals about home-based feeding support for LTV children. 2) Mixed methods study (months 7-32): a) Phase 1: An online parent/carer questionnaire will gather quantitative information on the types and impacts of feeding difficulties. b) Phase 2: Home feeding assessments and qualitative interviews with parents/carers will further characterise feeding difficulties and explore the psychosocial impacts of feeding challenges. 3) Concept mapping (months 18-37): Parents and health professionals will review evidence gathered in studies 1 and 2. They will generate, sort and rate ideas to develop service recommendations to optimise home-based feeding support for children receiving LTV in the UK. Knowledge mobilisation, dissemination and impact I will engage with knowledge users from the outset to maximise impact. I will share findings with families, professionals and policymakers using accessible resources. Outputs will include a best-practice statement and a report of service recommendations. Research impacts will include increased knowledge about feeding difficulties in children with LTV, improved evidence-based clinical practice, provision of national clinical guidance, and enhancement of patient services and quality of care. Research inclusion: I will monitor participants’ diversity characteristics and purposively recruit children, parents/carers and health professionals from a range of geographic, ethnic and socioeconomic backgrounds. I will develop infographics, social media content and plain English summaries with captions, alternative text and accessible colour schemes with my PPI group. Research material will be accessible using translation, visual supports and inclusive design.