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 disability and their families
Funder: Department of Health and Social Care

Abstract: Background Amidst evidence of discriminatory and abusive practice towards adults with learning disability in hospital, a Confidential Inquiry into the deaths of this population revealed they are more likely to die from causes that are potentially amenable to change by good quality healthcare than people without learning disability. Included in the review were the deaths of 14 children and young people with learning disability. Despite this inclusion, the focus of subsequent recommendations has been on changing practice in the adult setting. A major uncertainty is at what age health inequalities for patients with learning disability start. Whilst all public sector services now have a legal duty to provide reasonable adjustments for people with learning disability to ensure their equal access to services, a comprehensive review of how well hospital services are meeting the needs of children and young people with learning disability and their families has not been conducted. Qualitative evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for children and young people with learning disability exists but what is not known is whether children and young people are facing the same, or indeed different, inequalities as adults with learning disability. By drawing comparisons with children and young people without learning disability, we can identify what inequality exists for whom and why. Resources and interventions that prevent inequality can then be developed or improved and targeted to those who need it, when they need it, resulting in a more efficient and effective service that patients and parents are satisfied with. By paying more attention to our most vulnerable patients we can get it right for all children. Overall Aims a) To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate children and young people with learning disability and their families receiving equal access to high quality care and services. b) To identify the cross-organisational, organisational and individual factors in NHS hospitals that prevent children and young people with learning disability and their families receiving equal access to high quality care and services. c) To develop guidance for NHS trusts about the implementation for successful and effective measures to promote equal access for children and young people with learning disability and their families. Design A transformative, mixed methods case study design over 4 phases, prioritising the voices of children and young people and their parents. Each case will be represented by NHS specialist children's hospitals and non-specialist hospitals in England. PHASE 1 Aim: To describe the organisational context for healthcare delivery to children and young people with learning disability and their families Setting: 18 hospitals in England Methods: a) Interviews with senior managers b) Content analysis of hospital documents c) Staff questionnaire comparing how equipped they feel to deliver care effectively to children and young people with and without learning disability. PHASE 2 Aim: Case studies to compare the care and experiences of children and young people with and without learning disability and their parents. Setting: 4 hospitals in England (from Phase 1) Methods: CHILDREN AND YOUNG PEOPLE: a) Individually tailored interviews using creative and digital techniques, b) Hospital tour PARENTS: a) Hospital blog allowing for real time data collection without parents being separated from their child b) Recording of parental safety concerns c) Home interviews. STAFF: a) Semi-structured interviews HOSPITAL ACCESS: a) Retrospective mapping of hospital activity b) Community professionals questionnaire PHASE 3 Aim: To compare a) Children and young peoples’ and b) Parents’ satisfaction with hospital care Setting: 4 hospitals in England (as per Phase 2) Methods: Satisfaction Questionnaire given to a) Children and young people with and without learning disability and their parents on discharge from hospital PHASE 4 Aim: To synthesise and disseminate study findings and develop content of a training DVD Setting: 4 hospitals in England (as per Phase 2) Methods: A workshop involving study participants and experts in the field of learning disability. Data analysis A model for mixed methods data analysis will be used within each phase using appropriate methods before merging and connecting them through a period of data synthesis. Qualitative data will be managed and analysed using the Framework approach in conjunction with NVivo and quantitative data will be analysed using parametric and non-parametric descriptive statistics. Dissemination We will disseminate widely to all relevant stakeholders, including using social media. A report will be sent to all participants in a variety of accessible formats, taking into account the needs of those with learning disability. An on-line report will also be made available for lay audiences, including those with learning disability. End of study workshops for participants and known experts will provide a forum for deciding the content of a training DVD/package to guide students and staff about the barriers and facilitators to the delivery of high quality care for children and young people with learning disability and their families. We will disseminate widely to a range of hospital staff through published abstracts/papers and through national and international conference where we will look for opportunities to reach a range of professional groups. Working in partnership with the Foundation for People with Learning Disabilities, the British Institute of Learning Disabilities, Contact a Family and NHS England will strengthen our dissemination strategy, ensuring the findings are shared in a variety of accessible formats and reach a wide range of parents, professionals and children and young people with and without learning disability, helping drive support for change.

Lay abstract: Background Due to their complex and multiple needs, children and young people with learning disability are often labelled as 'disabled' or 'technology-dependent' or as having 'special needs', 'a long-term condition' or 'complex health needs'. Because these terms are often used inter-changeably the unique needs that arise because of their intellectual impairment are often overlooked. They have been described as an invisible population whose voice is rarely heard. We know that in adult hospitals, people with learning disability often do not receive the same quality of care as other people and there is evidence to show that they can experience abuse, discrimination and even death as a result. What we do not know is at what age people with learning disability start to experience such inequality. Through this study we want to focus on hearing the voice of children and young people with learning disability and give them equal opportunity to share their views of hospital care as other children and young people. Aim Our aim is to examine the organisation and delivery of services to identify whether children and young people with learning disability and their families receive equal access to high quality hospital care as other children and what factors help or prevent this. Patient and Public Involvement The research team has consulted widely with families, staff and learning disability experts about the research questions, design, methods of data collection and dissemination strategy. One parent with more than 20 years experience of using multiple NHS hospitals for her children with learning disability is a co-applicant. Her expertise will be invaluable in ensuring data collection is conducted in an appropriate, accessible, sensitive and ethical manner. Parents of children with and without learning disabilities will sit on the study steering committee and a reference group of children and young people with and without learning disabilities will be established. Methods Phase 1 We will interview senior managers and examine hospital documents in 18 hospitals to see what, if anything, is different about the way hospital services are organised to meet the needs of children and young people with learning disability compared to other patients. Using a staff questionnaire we will compare how equipped staff feel they are to identify and meet the needs of children and young people with and without a learning disability. Phase 2 We will conduct case studies of four hospitals to compare what happens when children and young people with and without learning disability and their families come into hospital. We will work directly with a sample of 56-64 children and young people aged 4-18 years with and without learning disability to understand their experience of being in hospital through talking, art activities, photography and/or going on a hospital tour. We will ask their parents to complete a hospital blog and record their safety concerns. We will interview parents at home following their child's discharge. Phase 3 Children and young people with and without learning disability and their parents will be given a questionnaire on discharge about how satisfied they are with the hospital care and treatment they receive. Phase 4 We will invite study participants and learning disability experts to a workshop to discuss the findings and develop the content of a DVD/training package to be used with healthcare staff and students. Dissemination The findings will be shared widely with all stakeholders, including using social media. A report will be sent to all children and young people and parents in a variety of accessible formats, taking into account the needs of those with learning disability.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH