AN EXPLORATORY SECONDARY DATA ANALYSIS OF THE IMPACT OF HETEROGENEITY ON ASSISTIVE TECHNOLOGY TO REDUCE SAFETY AND WANDERING RISKS FOR PEOPLE WITH DEMENTIA LIVING AT HOME

Introduction: There is an acknowledged gap between the potential and achieved benefit of assistive technology in the care of people with dementia. In order to make better use of this resource, this research aimed to investigate the heterogeneity of population characteristics of people with dementia living at home who have safety and wandering risks and how this is related to assistive technology recommended and installed to meet their needs. Methods: This research consisted of two studies; a systematic review and secondary data analysis. Initially, published quantitative data describing the needs of people with dementia living at home was subjected to meta-analysis in order to explore the prevalence of needs reported by people with dementia and their caregivers and associated heterogeneity. Following univariate analyses, ordinal models were developed using secondary data which described the needs of people with dementia, and their level of wandering and safety risk, to explore the relationship between needs and risks in this population. The possibility of grouping participants according to data describing multiple needs, predisposing characteristics and enabling resources was investigated using cluster analysis. Associations between these groups and recommended and installed Assistive Technology were investigated. Results: Prevalence estimates for twenty-four needs reported by people with dementia and their caregivers were provided for the first time. Heterogeneity was associated with the person reporting the needs and age of onset. Level of need was often not recorded in the dataset indicating limited assessment. Wandering risks were shown to be associated with posture and mobility, routine and cognition needs, whilst safety risks were associated with posture and mobility, and problem-solving needs. Partitioning Around Medoids cluster analysis demonstrated that robust clustering solutions could be created from data describing participants. Clustering solutions were then validated through exploring their association with recommended and installed Assistive Technology data and the published literature. Caregiver support and living situation impact Assistive Technology installed for people with dementia. Discussion: This research advances understanding of the impact that needs, safety and wandering risks, caregiver support and the living situation of the person with dementia have on variation in the assistive technology interventions recommended and installed for people with dementia. Results have implications for needs assessment and for the tailoring of Assistive Technology for this population. Keywords: dementia, assistive technology, community dwelling, meta-analysis, cluster analysis, ordinal regression, wandering, safety, risk, needs

Exploring the needs of people with dementia living at home reported by people with dementia and informal caregivers: A systematic review and meta-analysis

Maciver, Donald - ORCID 0000-0002-6173-429X https://orcid.org/0000-0002-6173-429XReplaced AM with VoR 09 Jan 2020Curnow, Eleanor - ORCID 0000-0001-9332-8248 https://orcid.org/0000-0001-9332-8248Objectives: To provide prevalence estimates of needs of people with dementia living at home, and to determine sources of variation associated with needs for this population.Method: A systematic review and meta-analysis was performed searching CINAHL, MEDLINE, PsycINFO and ASSIA databases. Following quality checks, random effects meta-analysis produced prevalence estimates for needs reported by people with dementia and by their informal caregivers. Fixed effects models were undertaken to compare caregiver and person with dementia reported needs. Heterogeneity was explored through sensitivity analysis. The study protocol was registered with Prospero #CRD42017074119Results: Six retrieved studies published between 2005 and 2017 including 1011 people with dementia and 1188 caregivers were included in the analysis. All data was collected using Camberwell Assessment of Need for the Elderly. Prevalence estimates are provided for 24 needs reported by participants in The Netherlands, United Kingdom, Poland, Ireland, Germany, Norway, Portugal, Italy and Sweden. Most prevalent needs reported by people with dementia were Memory 0.713 [95% CI 0.627, 0.791]; Food 0.706 [95% CI 0.547, 0.841]; Household activities 0.677 [95% CI 0.613, 0.738]; and Money 0.566 [95% CI 0.416, 0.711]. Caregivers reported greater prevalence than people with dementia did for 22 of 24 needs, although the priority ranking of needs was similar. Exploration of heterogeneity revealed that people with young onset dementia were the major source of variation for 24 out of 44 analyses.Conclusion: Increased understanding of prevalence of needs of people with dementia and associated heterogeneity can assist in planning services to meet those needs.https://doi.org/10.1080/13607863.2019.169574125pubpub

Living with and breaking a cycle of illness: A secondary qualitative data analysis of women’s experiences with long COVID

Eleanor Curnow - ORCID: 0000-0001-9332-8248 https://orcid.org/0000-0001-9332-8248Vaibhav Tyagi - ORCID: 0000-0003-2756-1513 https://orcid.org/0000-0003-2756-1513Long COVID is an emerging condition, with early evidence suggesting it impacts women at a greater rate than men. As we seek to understand long COVID, it is important to consider the holistic impacts of this condition. Therefore, a qualitative perspective was used to explore the experience of those living with long COVID. Eight people from Scotland, who presented as women and Caucasian, participated in this study. A thematic analysis, from a phenomenological perspective, was conducted on data collected during two semi-structured focus groups. Five central themes emerged including: (1) a prolonged, varied, and debilitating illness; (2) barriers to care; (3) predominantly negative experiences of care; (4) fighting to carry the burden; and (5) looking to the future. These themes are linked through an explanatory theory describing a cycle of illness, the work required to break the cycle, and participant’s aims to regain their health and advocate for their condition. The thematic results are consistent with two prior qualitative studies on long COVID, creating a relatively consistent picture of individuals’ experiences during the pandemic. Additionally, the developed theory shares commonalities with individuals living with chronic illness, providing further insight into participants’ experiences.This secondary analysis was conducted on data collected in a study funded by the Chief Scientist Office of Scotland (project code COV/QMU/20/04), in response to the COVID-19 pandemic.https://doi.org/10.3390/women20200172pubpub

Diagnostic assessment of autism in adults – current considerations in neurodevelopmentally informed professional learning with reference to ADOS-2

Services for the assessment and diagnosis of autism in adults have been widely criticized and there is an identified need for further research in this field. There is a call for diagnostic services to become more accessible, person-centered, neurodiversity affirming, and respectful. There is a need for workforce development which will increase capacity for diagnostic assessment and support for adults. ADOS-2 is a gold-standard diagnostic assessment tool for autism recommended in clinical guidelines. However, diagnostic procedures such as the ADOS-2 are rooted in the medical model and do not always sit comfortably alongside the neurodiversity paradigm or preferences of the autistic community. Training and educational materials need to account for the differences between these approaches and support clinicians to provide services which meet the needs of the adults they serve. The National Autism Implementation Team worked alongside ADOS-2 training providers to support clinicians in Scotland, to provide effective and respectful diagnostic assessment. The team engaged with clinicians who had attended ADOS training to identify areas of uncertainty or concern. Training materials were developed to support ADOS assessors to incorporate key principles including “nothing about us without us”; “difference not deficit”; “environment first”; “diagnosis matters,” “language and mindsets matter”; and “a neurodevelopmental lens,” to support the provision of neurodiversity affirming assessment practice. The National Autism Implementation Team also provided examples of actions which can be undertaken by clinicians to improve the assessment experience for those seeking a diagnosis. Training materials are based on research evidence, clinical experience, and the needs and wishes of autistic people

An interdisciplinary nationwide complex intervention for lifespan neurodevelopmental service development: Underpinning principles and realist programme theory

Donald Maciver - ORCID: 0000-0002-6173-429X https://orcid.org/0000-0002-6173-429XMarion Rutherford - ORCID: 0000-0002-2283-6736 https://orcid.org/0000-0002-2283-6736Eleanor Curnow - ORCID: 0000-0001-9332-8248 https://orcid.org/0000-0001-9332-8248Mairéad Murray - ORCID: 0000-0002-9607-1553 https://orcid.org/0000-0002-9607-1553Background: People seeking support for neurodevelopmental differences often report waiting too long for assessment and diagnosis, as well as receiving inadequate support in educational and health settings. The National Autism Implementation Team (NAIT) developed a new national improvement programme in Scotland, focusing on assessment, diagnosis, educational inclusion, and professional learning. The NAIT programme was conducted within health and education services across the lifespan for a range of neurodevelopmental differences, including autism, developmental coordination disorder, developmental language disorder, and attention deficit hyperactivity disorder. NAIT included a multidisciplinary team, with the involvement of an expert stakeholder group, clinicians, teachers, and people with lived experience. This study explores how the NAIT programme was planned, delivered, and received over three years. Design: We performed a retrospective evaluation. We collected data from review of programme documents, consultation with programme leads and consultation with professional stakeholders. A theory-based analysis was completed, drawing on the Medical Research Council Framework for developing and evaluating complex interventions, and realist analysis methods. We developed a programme theory of the contexts (C), mechanisms (M), and outcomes (O) influencing the NAIT programme, based on comparison and synthesis of evidence. A key focus was on identifying the factors that contributed to the successful implementation of NAIT activities across different domains, including practitioner, institutional and macro levels. Results: On synthesis of the data, we identified the key principles underlying the NAIT programme, the activities and resources utilised by the NAIT team, 16 aspects of context, 13 mechanisms, and 17 outcome areas. Mechanisms and outcomes were grouped at practitioner level, service level and macro level. The programme theory is pertinent to observed practice changes across all stages of referral, diagnosis and support processes within health and education services for neurodivergent children and adults. Conclusions: This theory-informed evaluation has resulted in a clearer and more replicable programme theory that can be used by others with similar aims. This paper illustrates the value of NAIT, as well as realist and complex interventions methodologies as tools for policymakers, practitioners, and researchers.https://doi.org/10.3389/fresc.2022.10605963pubpu

A brief neuro-affirming resource to support school absences for autistic learners: development and program description

Donald Maciver - ORCID: 0000-0002-6173-429X https://orcid.org/0000-0002-6173-429XMarion Rutherford - ORCID: 0000-0002-2283-6736 https://orcid.org/0000-0002-2283-6736Eleanor Curnow - ORCID: 0000-0001-9332-8248 https://orcid.org/0000-0001-9332-8248Izy Utley - ORCID: 0009-0002-2937-1887 https://orcid.org/0009-0002-2937-1887Background: Education should be inclusive, nurturing each individual’s potential, talents, and creativity. However, criticisms have emerged regarding support for autistic learners, particularly in addressing disproportionately high absence levels within this group. The demand for accessible, person-centered, neuro-affirming approaches is evident. This paper provides a program description of a structured absence support framework, developed and implemented during and following the Covid-19 pandemic. We detail creation, content, and implementation. Methods: We collaborated with stakeholders, reviewed literature and drew on existing theoretical frameworks to understand absence in autistic learners, and produced draft guidance detailing practical approaches and strategies for supporting their return to school. The final resource was disseminated nationally and made freely available online with a supporting program of work around inclusive practices. Results: The resource is rooted in neuro-affirming perspectives, rejecting reward-based systems and deficit models of autism. It includes key messages, case studies and a planning framework. It aims to cultivate inclusive practices with an autism-informed lens. The principles promoted include recognizing the child’s 24-hour presentation, parental partnership, prioritizing environmental modifications, and providing predictable, desirable and meaningful experiences at school. Feedback to date has been positive in terms of feasibility, face validity, and utility. Conclusion: This novel, freely available resource provides a concise, practical framework for addressing absence in autistic learners by cultivating a more inclusive, equitable, and supportive educational system in which autistic individuals can thrive.https://doi.org/10.3389/feduc.2024.13583549pubpu

Environmental Livelihood Security in Southeast Asia and Oceania: A Water-Energy-Food-Livelihoods Nexus Approach for Spatially Assessing Change

This document addresses the need for explicit inclusion of livelihoods within the environment nexus (water-energy-food security), not only responding to literature gaps but also addressing emerging dialogue from existing nexus consortia. We present the first conceptualization of ‘environmental livelihood security’, which combines the nexus perspective with sustainable livelihoods. The geographical focus of this paper is Southeast Asia and Oceania, a region currently wrought by the impacts of a changing climate. Climate change is the primary external forcing mechanism on the environmental livelihood security of communities in Southeast Asia and Oceania which, therefore, forms the applied crux of this paper. Finally, we provide a primer for using geospatial information to develop a spatial framework to enable geographical assessment of environmental livelihood security across the region. We conclude by linking the value of this research to ongoing sustainable development discussions, and for influencing policy agenda

Sustainable development and the water–energy–food nexus: A perspective on livelihoods

AbstractThe water–energy–food nexus is being promoted as a conceptual tool for achieving sustainable development. Frameworks for implementing nexus thinking, however, have failed to explicitly or adequately incorporate sustainable livelihoods perspectives. This is counterintuitive given that livelihoods are key to achieving sustainable development. In this paper we present a critical review of nexus approaches and identify potential linkages with sustainable livelihoods theory and practice, to deepen our understanding of the interrelated dynamics between human populations and the natural environment. Building upon this review, we explore the concept of ‘environmental livelihood security’ – which encompasses a balance between natural resource supply and human demand on the environment to promote sustainability – and develop an integrated nexus-livelihoods framework for examining the environmental livelihood security of a system. The outcome is an integrated framework with the capacity to measure and monitor environmental livelihood security of whole systems by accounting for the water, energy and food requisites for livelihoods at multiple spatial scales and institutional levels. We anticipate this holistic approach will not only provide a significant contribution to achieving national and regional sustainable development targets, but will also be effective for promoting equity amongst individuals and communities in local and global development agendas

Mental health in autistic adults: a rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective

Eleanor Curnow - ORCID: 0000-0001-9332-8248 https://orcid.org/0000-0001-9332-8248Marion Rutherford - ORCID: 0000-0002-2283-6736 https://orcid.org/0000-0002-2283-6736Donald Maciver - ORCID: 0000-0002-6173-429X https://orcid.org/0000-0002-6173-429XItem updated 2023-07-14 to include VoR.Background Autistic adults have high risk of mental ill-health and some available interventions have been associated with increased psychiatric diagnoses. Understanding prevalence of psychiatric diagnoses is important to inform the development of individualised treatment and support for autistic adults which have been identified as a research priority by the autistic community. Interventions require to be evaluated both in terms of effectiveness and regarding their acceptability to the autistic community. Objective This rapid review identified the prevalence of psychiatric disorders in autistic adults, then systematic reviews of interventions aimed at supporting autistic adults were examined. A rapid review of prevalence studies was completed concurrently with an umbrella review of interventions. Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines were followed, including protocol registration (PROSPERO#CRD42021283570). Data sources MEDLINE, CINAHL, PsycINFO, and Cochrane Database of Systematic Reviews. Study eligibility criteria English language; published 2011–2022; primary studies describing prevalence of psychiatric conditions in autistic adults; or systematic reviews evaluating interventions for autistic adults. Appraisal and synthesis Bias was assessed using the Prevalence Critical Appraisal Instrument and AMSTAR2. Prevalence was grouped according to psychiatric diagnosis. Interventions were grouped into pharmacological, employment, psychological or mixed therapies. Strength of evidence for interventions was assessed using GRADE (Grading of Recommendations, Assessment, Development and Evaluation). Autistic researchers within the team supported interpretation. Results Twenty prevalence studies were identified. Many included small sample sizes or failed to compare their sample group with the general population reducing validity. Prevalence of psychiatric diagnoses was variable with prevalence of any psychiatric diagnosis ranging from 15.4% to 79%. Heterogeneity was associated with age, diagnosis method, sampling methods, and country. Thirty-two systematic reviews of interventions were identified. Four reviews were high quality, four were moderate, five were low and nineteen critically low, indicating bias. Following synthesis, no intervention was rated as ‘evidence based.’ Acceptability of interventions to autistic adults and priorities of autistic adults were often not considered. Conclusions There is some understanding of the scope of mental ill-health in autism, but interventions are not tailored to the needs of autistic adults, not evidence based, and may focus on promoting neurotypical behaviours rather than the priorities of autistic people.pubpu