Family and professional perspectives on the lived experience of children with a learning disability and behavioural needs

This thesis considers family and professional perspectives on the lived experience of children with a learning disability and behavioural needs. The literature suggests that this group of children experience an increased risk of exclusion from their peers and their community due to their complexity of need and lack of appropriate support. Twenty semi- structured interviews were conducted to gather data from parents and professionals involved in the support of children with a learning disability and behavioural needs. A phenomenological approach was adopted to consider the lived experience of children through perspectives of the participants. Interviews were transcribed verbatim and analysed using Attride-Stirling’s (2001) model of thematic analysis. A total of eight global themes were deduced from the findings. The parents’ data yielded four themes: finding our way; square services round needs; the price of behaviour; belonging. The four professional themes identified were: the behaviour of services; complexity of need; behavioural barriers; needing to know- knowing needs. The child’s experience of inclusion and exclusion ran through the findings as central tenets of the participant perspectives on lived experience. The study adds to the body of knowledge that considers the inclusion and integration of children with complex needs into mainstream and specialist provision. Perspectives on lived experience highlight current practice that can increase the vulnerability of children to the risk of exclusion from families, peers and ultimately their community. Recommendations call for proactive support to identify children in their early years at risk of experiencing exclusion due to their behavioural needs. Appropriate and effective provision will avoid the increased burden placed on families, and ultimately the state, of supporting children who remain vulnerable and at increased risk of exclusion from their communities

Family and professional perspectives on the lived experience of children with a learning disability and behavioural needs

This thesis considers family and professional perspectives on the lived experience of children with a learning disability and behavioural needs. The literature suggests that this group of children experience an increased risk of exclusion from their peers and their community due to their complexity of need and lack of appropriate support. Twenty semi- structured interviews were conducted to gather data from parents and professionals involved in the support of children with a learning disability and behavioural needs. A phenomenological approach was adopted to consider the lived experience of children through perspectives of the participants. Interviews were transcribed verbatim and analysed using Attride-Stirling’s (2001) model of thematic analysis. A total of eight global themes were deduced from the findings. The parents’ data yielded four themes: finding our way; square services round needs; the price of behaviour; belonging. The four professional themes identified were: the behaviour of services; complexity of need; behavioural barriers; needing to know- knowing needs. The child’s experience of inclusion and exclusion ran through the findings as central tenets of the participant perspectives on lived experience. The study adds to the body of knowledge that considers the inclusion and integration of children with complex needs into mainstream and specialist provision. Perspectives on lived experience highlight current practice that can increase the vulnerability of children to the risk of exclusion from families, peers and ultimately their community. Recommendations call for proactive support to identify children in their early years at risk of experiencing exclusion due to their behavioural needs. Appropriate and effective provision will avoid the increased burden placed on families, and ultimately the state, of supporting children who remain vulnerable and at increased risk of exclusion from their communities.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

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

PurposeDrawing 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/approachA 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.FindingsImplementation 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/valueThere 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: Scoping Research

This is a presentation that was delivered at the IASSIDD Europe Congress 6-8 July 2021, Amsterdam, Netherlands

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

© The Author(s) 2024.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 3 of 4 - evaluation

Mafuba, K., Chapman, H., Kiernan, J., Kupara, D., Kudita, C. & Chester, R. (2023). Understanding the contribution of intellectual disabilities nurses: Paper 3 of 4 - evaluation. Journal of Intellectual Disabilities, vol(issue), pages. https://doi.org/10.1177/17446295231196588. Copyright © 2023 The Authors. Reprinted by permission of SAGE Publications.Abstract 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 evaluate intellectual disability nurses’ confidence in their understanding of the interventions they undertook. Quanitative 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 needs to be undertaken by nurse leaders to ascertain and address this lack of clarity

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

© The Author(s) 2023.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

Understanding the contribution of intellectual disability nurses: Scoping research Volume 3 of 3: Compendium of intellectual disabilities nursing interventions

Introduction The RCN Foundation commissioned the University of West London and their collaborators to undertake scoping research on understanding the contribution of nurses to improve the health and well-being of children, adults and older people with intellectual disabilities (ID), now and for the future. The overall aim of the research was to identify nursing led and or nursing centred interventions that address the challenging and changing needs of people with ID. This, the ‘Compendium of ID nursing interventions’ provides a catalogue of these interventions. The research project report is in three volumes; Volume 1/3: Scoping literature review report; Volume 2/3: Scoping survey research report; and Volume 3/3: Compendium of intellectual disabilities nursing interventions (this volume). Methods In phase 1 of the project, we undertook a scoping literature review using the Joanna Briggs Institute’s (JBI) scoping review protocols. We used the PRISMA-ScR process and JBI guidance to select the literature for review and to present the literature review report (Trico, et al., 2018; Peters, et al., 2017). A mixed methods approach to the review and synthesis was used due to the heterogeneous nature of the evidence. JBI tools were used to pool findings and rate them for quality. Thematic synthesis was used to generate analytical themes. Empirical (quantitative, qualitative, mixed methods) studies, synthesised evidence (literature reviews) and opinion papers, (n = 52) were included in the review (see volume 1 of thereport). In phase 2 of the project, we undertook an online survey to collect quantitative and qualitative data. There were 230 participants from 7 countries. We used thematic, and content analyses to analyse qualitative data. We undertook descriptive and inferential analyses of quantitative data (see volume 2 of the report) Emerging ID nursing interventions In total we identified 925 interventions. In phase 1 we identified 154 ID nursing interventions, and in phase 2 we identified 878 interventions. The discrepancy in the total numbers is that interventions which appeared in both phases are only recorded once. In phase 2, these interventions were undertaken in a wide range of settings and across the lifespan. 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. We have merged the interventions we identified in the literature review and from the table below. We have removed duplicates and merged the evidence sources where appropriate