{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,25]],"date-time":"2026-03-25T02:32:49Z","timestamp":1774405969751,"version":"3.50.1"},"reference-count":45,"publisher":"BMJ","issue":"12","funder":[{"DOI":"10.13039\/501100002001","name":"Health Services and Delivery Research Programme","doi-asserted-by":"publisher","award":["14\/21\/45"],"award-info":[{"award-number":["14\/21\/45"]}],"id":[{"id":"10.13039\/501100002001","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2016,11,11]]},"published-print":{"date-parts":[[2016,12]]},"abstract":"<jats:sec><jats:title>Introduction<\/jats:title><jats:p>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\u201315\u2005years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods and analysis<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Ethics and dissemination<\/jats:title><jats:p>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\u20134 (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.<\/jats:p><\/jats:sec>","DOI":"10.1136\/bmjopen-2016-012333","type":"journal-article","created":{"date-parts":[[2016,12,10]],"date-time":"2016-12-10T08:08:01Z","timestamp":1481357281000},"page":"e012333","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":16,"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"],"prefix":"10.1136","volume":"6","author":[{"given":"Kate","family":"Oulton","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jo","family":"Wray","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucinda","family":"Carr","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Angela","family":"Hassiotis","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carey","family":"Jewitt","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sam","family":"Kerry","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7288-9529","authenticated-orcid":false,"given":"Irene","family":"Tuffrey-Wijne","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Faith","family":"Gibson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2016,12,9]]},"reference":[{"key":"2024051610262440000_6.12.e012333.1","unstructured":"Mencap. Death by indifference. London: Mencap, 2007."},{"key":"2024051610262440000_6.12.e012333.2","doi-asserted-by":"crossref","unstructured":"Michael J . Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: DH, 2008.","DOI":"10.1108\/13595474200800036"},{"key":"2024051610262440000_6.12.e012333.3","unstructured":"Improving Health and Lives Learning Disabilities Observatory. Confidential Inquiry into Premature Death of People with Learning Disabilities. Bristol: IHAL, 2012."},{"key":"2024051610262440000_6.12.e012333.4","unstructured":"Mencap. Getting It Right Charter. 2010."},{"key":"2024051610262440000_6.12.e012333.5","unstructured":"The Joint Health and Social Care Learning Disability Self Assessment Framework: How Local Learning Disability Communities Rate Themselves [press release]. Learning disabilities observatory 2014. www.ndti.org.uk\/news\/latest-press-releases\/self-assessment-framework (accessed Nov 2016)."},{"key":"2024051610262440000_6.12.e012333.6","unstructured":"Dept of Health. Disability Discrimination Act 2005. London: HMSO, 2005."},{"key":"2024051610262440000_6.12.e012333.7","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2013-004606"},{"key":"2024051610262440000_6.12.e012333.8","doi-asserted-by":"publisher","DOI":"10.1352\/0895-8017(2007)112[140:COSPTH]2.0.CO;2"},{"key":"2024051610262440000_6.12.e012333.9","doi-asserted-by":"publisher","DOI":"10.1177\/1744629511430772"},{"key":"2024051610262440000_6.12.e012333.10","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2007.00951.x"},{"key":"2024051610262440000_6.12.e012333.11","doi-asserted-by":"crossref","unstructured":"Emerson C , Hatton C , Robertson J , et al . People with Learning Disabilities in England 2011. Improving Health and Lives Learning Disability Public Health Observatory, 2012. Department of Health, London.","DOI":"10.1108\/20441281211198835"},{"key":"2024051610262440000_6.12.e012333.12","unstructured":"Emerson E , Hatton C , Felce D , et al . Learning disabilities: the fundamental facts. London: The Foundation for People with Learning Disabilities, 2001."},{"key":"2024051610262440000_6.12.e012333.13","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2788.2003.00464.x"},{"key":"2024051610262440000_6.12.e012333.14","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2214.2001.00187.x"},{"key":"2024051610262440000_6.12.e012333.15","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2002.019158"},{"key":"2024051610262440000_6.12.e012333.16","unstructured":"Kennedy I . Getting it right for children and young people: overcoming cultural barriers in the NHS so as to meet their needs. London: DH, 2010."},{"key":"2024051610262440000_6.12.e012333.17","doi-asserted-by":"publisher","DOI":"10.1016\/S0891-4222(00)00062-7"},{"key":"2024051610262440000_6.12.e012333.18","unstructured":"Department of Health. National Service Framework for Children, Young People and Maternity Service. Disabled Children and Young People and Those with Complex Health Needs. London: HMSO, 2004."},{"key":"2024051610262440000_6.12.e012333.19","doi-asserted-by":"publisher","DOI":"10.1177\/0969733009106648"},{"key":"2024051610262440000_6.12.e012333.20","doi-asserted-by":"publisher","DOI":"10.1177\/1367493506067884"},{"key":"2024051610262440000_6.12.e012333.21","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2005.01247.x"},{"key":"2024051610262440000_6.12.e012333.22","doi-asserted-by":"publisher","DOI":"10.1177\/1367493503007001674"},{"key":"2024051610262440000_6.12.e012333.23","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2000.01556.x"},{"key":"2024051610262440000_6.12.e012333.24","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2012.01372.x"},{"key":"2024051610262440000_6.12.e012333.25","doi-asserted-by":"publisher","DOI":"10.1080\/0968759032000097825"},{"key":"2024051610262440000_6.12.e012333.26","doi-asserted-by":"crossref","first-page":"738","DOI":"10.1111\/hex.12254","article-title":"Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study","volume":"19","author":"Sharkey","year":"2016","journal-title":"Health Expect"},{"key":"2024051610262440000_6.12.e012333.27","doi-asserted-by":"publisher","DOI":"10.1177\/1367493507085615"},{"key":"2024051610262440000_6.12.e012333.28","doi-asserted-by":"crossref","first-page":"110","DOI":"10.1111\/j.1468-3156.2008.00522.x","article-title":"The experiences of children with learning disabilities, their carers and staff during a hospital admission","volume":"37","author":"Jackson-Brown","year":"2009","journal-title":"Br J Learn Disabil"},{"key":"2024051610262440000_6.12.e012333.29","doi-asserted-by":"crossref","first-page":"303","DOI":"10.1080\/13698570903013631","article-title":"Devoted protection: how parents of children with severe learning disabilities manage risk","volume":"11","author":"Oulton","year":"2009","journal-title":"Health Risk Soc"},{"key":"2024051610262440000_6.12.e012333.30","first-page":"316","article-title":"Hospital staff experiences of caring for children and youth with Id and their families: it's the little things that make the difference!","volume":"27","author":"Oulton","year":"2014","journal-title":"J Appl Res Intellect Disabil"},{"key":"2024051610262440000_6.12.e012333.31","doi-asserted-by":"crossref","unstructured":"Tuffrey-Wijne I , Giatras N , Goulding L , et al . Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study. London: NIHR, 2013.","DOI":"10.3310\/hsdr01130"},{"key":"2024051610262440000_6.12.e012333.32","unstructured":"Creswell JW , Plano Clark VL . Designing and conducting mixed methods research. 2nd Edition. Sage Publications, London."},{"key":"2024051610262440000_6.12.e012333.33","first-page":"1","article-title":"Application of a case study methodology","volume":"3","author":"Tellis","year":"1997","journal-title":"Qual Rep"},{"issue":"(5 Pt 2)","key":"2024051610262440000_6.12.e012333.34","first-page":"1209","article-title":"Enhancing the quality of case studies in health services research","volume":"34","author":"Yin","year":"1999","journal-title":"Health Serv Res"},{"key":"2024051610262440000_6.12.e012333.35","doi-asserted-by":"publisher","DOI":"10.1177\/1524839903258223"},{"key":"2024051610262440000_6.12.e012333.36","unstructured":"Health and Social Care Information Centre. Learning Disabilities Census Report. England: hscic, 2013."},{"key":"2024051610262440000_6.12.e012333.37","unstructured":"Clark A , Moss P . Listening to young children. The Mosaic Approach. London: National Children's Bureau, 2011."},{"key":"2024051610262440000_6.12.e012333.38","unstructured":"Clark A . The mosaic approach and research with young children. In: Lewis V , Kellet M , Robinson C , et al , eds. The reality of research with children and young people. London: Sage, 2003:157\u201361."},{"key":"2024051610262440000_6.12.e012333.39","doi-asserted-by":"publisher","DOI":"10.7748\/nr2009.07.16.4.56.c7161"},{"key":"2024051610262440000_6.12.e012333.40","doi-asserted-by":"publisher","DOI":"10.1177\/1049732308318230"},{"key":"2024051610262440000_6.12.e012333.41","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2010.01138.x"},{"key":"2024051610262440000_6.12.e012333.42","doi-asserted-by":"crossref","first-page":"9","DOI":"10.7748\/ncyp2014.04.26.3.9.s9","article-title":"How arts-based approaches can put the fun into child-focused research","volume":"26","author":"Carter","year":"2014","journal-title":"Nurs Child Young People"},{"key":"2024051610262440000_6.12.e012333.43","unstructured":"Clausen H . Doctors in training leading quality improvement: families reporting critical incidents and near misses in a children's hospital . London: The Health Foundation, 2014."},{"key":"2024051610262440000_6.12.e012333.44","unstructured":"Ritchie J , Lewis J . Qualitative research practice\u2014a guide for social science students and researchers. London: Sage, 2003."},{"key":"2024051610262440000_6.12.e012333.45","unstructured":"Nuffield Council on Bioethics. Children and clinical research: ethical issues. London: National Council on Bioethics, 2015."}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2016-012333","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,16]],"date-time":"2024-05-16T17:42:40Z","timestamp":1715881360000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2016-012333"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,12]]},"references-count":45,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2016,12,9]]},"published-print":{"date-parts":[[2016,12]]}},"alternative-id":["10.1136\/bmjopen-2016-012333"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2016-012333","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,12]]}}}