Understanding the contribution of intellectual disabilities nurses. Paper 4 of 4 - Impacts of intellectual disability nursing interventions.

Internationally, there is a wide variety of roles and expectations for intellectual disabilities nurses, and the range of nursing interventions they undertake in this field has not been clearly identified. In this paper we report the impacts of intellectual nursing interventions from an online survey of intellectual disability nurses. An online survey, using voluntary response sampling was used to collect case study examples from 230 participants from seven countries. We identified 13 themes of the impacts, and 23 broad groups of case examples of intellectual disability nursing interventions with, pregnant women, children, adults, older adults, and people at the end of life. Awareness of the roles of intellectual disability nurses and their importance in addressing health inequalities and facilitating the use of mainstream services for people with intellectual disabilities will enable improved healthcare experience and healthcare outcomes for people with intellectual disabilities.

Understanding the contribution of intellectual disabilities nurses. Paper 1 of 4 -Scoping literature review.

The objective of this scoping review was to summarise evidence on the contribution of intellectual disabilities nurses to improve the health and well-being of children, adults and older people with intellectual disability, now and for the future. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (for Scoping Reviews) (PRISMA-ScR) process and Joanna Briggs Institute (JBI) guidance was used. We included 54 publications. We identified 154 interventions undertaken by intellectual disability nurses. We categorised the intellectual disability nursing interventions into three themes: effectuating nursing procedures, enhancing impact of services, and enhancing quality of life.Findings point to high quality research being essential in determining the impact and effectiveness of intellectual disability nursing interventions across the lifespan. We recommend that a searchable online compendium of intellectual disability nurse interventions be established and regularly updated. This will provide opportunities to engage more effectively in evidence-based practice.

Evaluating the implementation of a person-centred transition programme for adolescents and young adults with long-term conditions: the role of context and organisational behaviour.

PURPOSE: Drawing on the experiences of healthcare professionals in one paediatric hospital, this paper explores the influence of context and organisational behaviour on the implementation of a person-centred transition programme for adolescents and young adults (AYA) with long-term conditions. DESIGN/METHODOLOGY/APPROACH: A single embedded qualitative case study design informed by a realist evaluation framework, was used. Participants who had experience of implementing the transition programme were recruited from across seven individual services within the healthcare organisation. The data were gathered through semi-structured interviews (n = 20) and analysed using thematic analysis. FINDINGS: Implementation of the transition programme was influenced by the complex interaction of macro, meso and micro processes and contexts. Features of organisational behaviour including routines and habits, culture, organisational readiness for change and professional relationships shaped professional decision-making around programme implementation. ORIGINALITY/VALUE: There exists a significant body of research relating to the role of context and its influence on the successful implementation of complex healthcare interventions. However, within the area of healthcare transition there is little published evidence on the role that organisational behaviour and contextual factors play in influencing transition programme implementation. This paper provides an in-depth understanding of how organisational behaviour and contextual factors affect transition programme implementation.

Understanding the contribution of intellectual disability nurses. Paper 2 of 4 - Survey.

The objective was to identify ID nursing interventions and their impact on the health and healthcare of people with IDs. Data was collected using an online survey questionnaire from a voluntary response and snowball sample of 230 participants. Thematic, descriptive statistical, and inferential statistical analyses were undertaken. We identified 878 interventions that could be undertaken by ID nurses from 7 countries. We categorised the interventions into five themes: effectuating nursing procedures, enhancing impact of ID services, enhancing impact of mainstream services, enhancing quality of life, and enhancing ID nursing practice. Findings demonstrate that ID nurses play important roles in improving the health and healthcare experiences of people with IDs.

Understanding the contribution of intellectual disabilities nurses: Paper 3 of 4 - evaluation.

The overall objective of this research was to identify intellectual disability nursing interventions and their impact on the health and healthcare of people with intellectual disability. This is part 3 of a 4-part series. In this paper we report the findings from quantitative questions from an online survey of intellectual disability nurses. The objective of this part of the study was to a evaluate intellectual disability nurses' confidence in their understanding of the interventions they undertook. Quantitative data was collected using an online survey questionnaire from a voluntary response and snowball sample of 230 participants from 7 countries. Thematic, descriptive statistical, and inferential statistical analyses were undertaken. The evaluation data suggest and demonstrate a lack of clarity among intellectual disability nurses of the interventions they can effectively undertake. There appears to be correlations between lack of role clarity and the types of employer organisations and countries. Further work need to be undertaken by nurse leaders ascertain and address this lack of clarity.

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.

Physical restraint of children and adolescents in mental health inpatient services: A systematic review and narrative synthesis.

Physical restraint is regularly used in children and adolescent mental health care, often as a reactive behaviour management strategy. Physical restraint has been associated with physical injury, but psychological consequences are poorly understood. The aim of this systematic review was to examine physical restraint of children and adolescents in inpatient mental healthcare services. Healthcare databases were searched to identify English language publications discussing anyone aged ≤18 years who had experienced physical restraint as a mental health inpatient. No date restrictions were applied. Sixteen quantitative studies are included within this review. Most studies are retrospective in nature. Publications were appraised using the Critical Appraisal Skills Programme quality assessment tool. Common characteristics associated with children and adolescents who experience physical restraint include age, gender, diagnosis, and history. Most studies associate physical restraint with the management of aggression. Findings suggest that it may be a combination of patient (intrinsic) and environmental (extrinsic) factors which ultimately lead to children and adolescents experiencing restraint. This review confirms that little is known about children and adolescents' first-hand experiences of physical restraint. Future research should address children and adolescents' perceptions and first-hand experiences of physical restraint.

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.

Mothers' perspectives on the lived experience of children with intellectual disability and challenging behaviour.

Children with intellectual disability and behavioural needs (challenging behaviour) are vulnerable to exclusion from services and communities. The situation is exacerbated by difficulties in accessing appropriate support and services to effectively meet the needs of children and carers. Family perspectives on the 'lived experience' of children can provide insight into how behavioural needs can affect their ability to access everyday experiences. Semi-structured interviews were conducted with mothers of children with intellectual disabilities and challenging behaviours. Phenomenological thematic analysis provided four key themes: finding our way; square services, round needs; behaviour touches everything and belonging. Experience of inclusion and exclusion was a central tenet of the lived experience. Recommendations call for timely proactive and bespoke interventions to identify and support children at risk of exclusion from communities. Early intervention and effective local provision will avoid increased burdens placed on families and services, in supporting children whose needs are currently unmet within child-centred provision.