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To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

ABSTRACT: BACKGROUND:Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities. METHOD:Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England. RESULTS:No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about "flagging" patients might be a significant barrier. DISCUSSION:Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

SUBMITTER: Kenten C

PROVIDER: S-EPMC6852602 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

Kenten Charlotte C Wray Jo J Gibson Faith F Russell Jessica J Tuffrey-Wijne Irene I Oulton Kate K

Journal of applied research in intellectual disabilities : JARID 20190516 5

<h4>Background</h4>Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities.<h4>Method</h4>Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS ...[more]

PMID: 31095841

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Project description:BackgroundFailures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised.MethodsTwo data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion.ResultsThe qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential 'dependency work' was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net.ConclusionsA series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely.

Project description:Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission's (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs.Individual interviews (n?=?65) and anonymised online survey (n?=?2261) were conducted with hospital staff working with CYP in 15 children's and 9 non-children's hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants.The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD.Findings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs. There is a pressing need to understand the impact this has on them and their families.The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

Project description:IntroductionNon-ambulant children and young people with physical disabilities are at high risk of experiencing negative health outcomes associated with sedentary time. A previous scoping review summarising evidence relating to sedentary behaviours of children with physical disabilities identified the need for validated methods of measuring physical activity of children who use wheelchairs and evaluation of interventions to reduce sedentary time. The scoping review did not assess the quality of evidence relating to this topic, therefore its validity remains unclear. No reviews focussing on non-ambulant children and young people up to the age of 25 years have been undertaken.The objectives of this systematic search and review are to:Identify all peer-reviewed articles relating to sedentary behaviour of non-ambulant children and young people.Categorise the articles according to study design and four subquestions relating to (i) measurement, (ii) patterns, (iii) associated risks and (iv) interventions to reduce sedentary time or behaviour.Critically appraise quality of the articles using established critical appraisal tools.Summarise the evidence for each subquestion. Describe its cumulative strength and identify knowledge gaps.Methods and analysisThis protocol was developed using the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist. The research questions, inclusion/exclusion criteria and search terms have been developed a priori using the 'Population, Concept and Context' framework. Online databases will be systematically searched to identify peer-reviewed articles published between 1996 and 2021. Two reviewers will screen, categorise and critically appraise the articles. Data extraction and analysis will be verified by the second reviewer.Results will be reported as a best evidence synthesis, with reference to the PRISMA checklist.Ethics and disseminationEthical approval is not required. The review will be submitted to an appropriate peer-reviewed journal.RegistrationThe review is registered on the Open Science Framework database. DOI: https://doi.org/10.17605/OSF.IO/SQXJB. Any protocol amendments will be recorded in the Open Science Framework database.

Dataset Information

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

Publications

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

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