Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.

Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.    Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.

Approaches used to prevent and reduce the use of restrictive practices on adults with learning disabilities: Protocol for a realist review.

INTRODUCTION: The use of restrictive practices has significant adverse effects on the individual, care providers and organisations. This review will describe how, why, for whom, and in what circumstances approaches used by healthcare organisations work to prevent and reduce the use of restrictive practices on adults with learning disabilities. METHODS AND ANALYSIS: Evidence from the literature will be synthesised using a realist review approach - an interpretative, theory-driven approach to understand how complex healthcare approaches work in reducing the use of restrictive practices in these settings. In step 1, existing theories will be located to explore what approaches work by consulting with key topic experts, holding consultation workshops with healthcare professionals, academics, and experts by experience, and performing an informal search to help develop an initial programme theory. A systematic search will be performed in the second step in electronic databases. Further searches will be performed iteratively to test particular subcomponents of the initial programme theory, which will also include the use of the CLUSTER approach. Evidence judged as relevant and rigorous will be used to test the initial programme theory. In step three, data will be extracted and coded inductively and deductively. The final step will involve using a realist logic of analysis to refine the initial programme theory in light of evidence. This will then provide a basis to describe and explain what key approaches work, why, how and in what circumstances in preventing and reducing the use of restrictive practices in adults with learning disabilities in healthcare settings. RESULTS: Findings will be used to provide recommendations for practice and policymaking. REGISTRATION: In accordance with the guidelines, this realist review protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) on 4th December 2019 (CRD42019158432).

Systematic review of study designs and methods in health transition research for young people with intellectual disabilities.

BACKGROUND: Transition for young people with intellectual disabilities from paediatric or adolescent services into adult health care services remains a difficult process for all stakeholders. The study assessed the type of interventions, the methodological approaches, study designs and location of existing published evidence in health care transitions. METHODS: A systematic review utilising the PRISMA protocol with an amended quality appraisal tool to explore the nature of published evidence on health care transitions for young people. RESULTS: Findings demonstrate that health transition research for this population lacks a robust evidence base and researchers favour exploratory studies investigating the experiential dimension of transition. The lack of involvement of young people in the studies indicates a problematic absence of genuinely participatory research. CONCLUSION: The study is the first systematic review of empirical studies in health transition of young people with intellectual disabilities exploring the nature of existing evidence. The results will support setting priorities for future research.

Best practice in caring for adults with dementia and learning disabilities.

People with learning disabilities, particularly Down's syndrome, are at increased risk of dementia. At present, services and care tailored to people with both dementia and a learning disability are unsatisfactory. This article reviews the literature specific to dementia in people with learning disabilities, including: comprehensive screening, diagnosis, management, environmental considerations, end of life care and training issues for nursing staff. Recommendations for best practice and service improvement are made to improve the quality of life for individuals with dementia and learning disabilities, pre and post-diagnosis.