title: Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families.
abstract: Despite evidence of health inequalities for adults with intellectual disability (ID) there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (CYP) with ID and their families. We do not know how relevant existing recommendations and guidelines are to CYP, whether these are being applied in the paediatric setting or what difference they are making. Evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for CYP with ID exists. However, the extent to which their experience differs from parents of CYP without ID is not known and the views and experiences of CYP with ID have not been investigated. We will compare how services are delivered to, and experienced by CYP aged 5-15 years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances.
  
  
  
  We will use a transformative, mixed methods case study design to collect data over four consecutive phases. We will involve CYP, parents and hospital staff using a range of methods; interviews, parental electronic diary, hospital and community staff questionnaire, patient and parent satisfaction questionnaire, content analysis of hospital documents and a retrospective mapping of patient hospital activity. Qualitative data will be managed and analysed using NVivo and quantitative data will be analysed using parametric and non-parametric descriptive statistics.
  
  
  
  The study will run from December 2015 to November 2018. We have Health Authority Approval (IRAS project ID: 193932) for phase 1 involving staff only and ethical and Health Authority Approval for phases 2-4 (IRAS project ID: 178525). We will disseminate widely to relevant stakeholders, using a range of accessible formats, including social media. We will publish in international peer-reviewed journals and present to professional, academic and lay audiences through national and international conferences.
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Kate
authors.initials: K
authors.lastname: Oulton
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital NHS Foundation Trust, London, UK.|JM Barrie Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Wray
authors.affiliation: JM Barrie Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Lucinda
authors.initials: L
authors.lastname: Carr
authors.affiliation: Division of Psychiatry, UCL, London, UK.
authors.forename: Angela
authors.initials: A
authors.lastname: Hassiotis
authors.affiliation: UCL Knowledge Lab, UCL Institute of Education, London, UK.
authors.forename: Carey
authors.initials: C
authors.lastname: Jewitt
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Sam
authors.initials: S
authors.lastname: Kerry
authors.affiliation: Kingston University and St George's, University of London, London, UK.
authors.forename: Irene
authors.identifier: 0000-0002-7288-9529
authors.initials: I
authors.lastname: Tuffrey-Wijne
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital NHS Foundation Trust, London, UK.|School of Health Science, University of Surrey, Surrey, UK.
authors.forename: Faith
authors.initials: F
authors.lastname: Gibson
mesh_terms: D000293:Adolescent; D002648:Child; D002662:Child Health Services / Q000458:organization & administration / Q000592:standards; D002675:Child, Preschool; D005260:Female; D006297:Health Services Accessibility / Q000458:organization & administration / Q000592:standards; D006761:Hospitals / Q000592:standards; D006801:Humans; D008607:Intellectual Disability; D007859:Learning Disabilities; D008297:Male; D008605:Mental Health Services / Q000458:organization & administration / Q000592:standards; D011787:Quality of Health Care; D012189:Retrospective Studies; D006113:United Kingdom
keywords: Intellectual Disability; Mixed methods; PAEDIATRICS