Participation-related constructs and participation of children with additional support needs in schools.

AIM: To investigate associations between participation-related constructs and participation frequency and involvement in inclusive schools. METHOD: In this cross-sectional study, teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties, completed measures. Participation-related constructs were measured using the School Participation Questionnaire; participation frequency and involvement were measured using the Participation and Environment Measure for Children and Youth. A series of multilevel linear mixed-effects regression models with maximum likelihood estimates and bootstrap confidence intervals with p-values were obtained. Final models included participation-related constructs and participation, controlling for demographic and diagnostic confounders (including age, sex, language, level of school support, and autism). RESULTS: Six hundred and eighty-eight children (448 [65.1%] males; mean age 8 years 7 months [range 4 years 10 months-12 years 13 months, standard deviation 2 years 1 months]) were assessed by 252 teachers. Across a series of models, participation-related constructs were consistently associated with more intensive participation (competence, environment, identity p < 0.001; symptoms p = 0.007), independent of confounders. More frequent participation remained associated with three of four participation-related constructs (competence, identity p < 0.001; environment p = 0.021). Age (p = 0.046), language (p = 0.002), and level of school support (p = 0.039) also remained significantly associated with frequency of participation. INTERPRETATION: Children with additional support needs in inclusive schools may have several participation barriers. Policies and interventions to improve participation are needed. WHAT THIS PAPER ADDS: Across a series of models, participation-related constructs were associated with frequency and intensity of participation. Only participation-related constructs were associated with participation intensity. Demographic and diagnostic variables were associated with frequency, not intensity, of participation. Teacher assessment is valid for assessment of participation and participation-related constructs.

Neurodevelopmental disorders and neurodiversity: definition of terms from Scotland's National Autism Implementation Team.

Adults with neurodevelopmental disorders frequently present to, but fit uneasily into, adult mental health services. We offer definitions of important terms related to neurodevelopmental disorders through unifying research data, medical and other viewpoints. This may improve understanding, clinical practice and development of neurodevelopmental disorder pathways within adult mental health services.

Psychometric properties of the School Participation Questionnaire: Testing a measure of participation-related constructs.

AIM: To explore concurrent validity, convergent validity, interrater reliability, test-retest reliability, and Rasch model analysis of the School Participation Questionnaire (SPQ), a tool for teachers to assess personal and environmental determinants of school participation. METHOD: Teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties completed measures. Data were collected using the SPQ and the Participation and Environment Measure for Children and Youth (PEM-CY). Test-retest and interrater reliability were assessed using intraclass correlation coefficients (ICCs). Internal consistency was assessed with Cronbach's alpha. Concurrent and convergent validity were explored via correlations with the PEM-CY. Further psychometrics were examined using a Rasch model. RESULTS: One hundred and eighty-seven children (136 [72.7%] male; mean age 9y [range 5y 6mo-12y 10mo, SD 2y]) were assessed by 67 teachers. Cronbach's alpha, test-retest, and interrater reliability were acceptable-excellent across each SPQ scale (alphas=0.89, 0.9, 0.94, 0.79; test-retest ICCs=0.64, 0.61, 0.78, 0.62; interrater ICCs=0.85, 0.71, 0.90, 0.81). Concurrent and convergent validity were confirmed with significant positive correlations between SPQ and PEM-CY. After Mokken and Rasch model analysis, person and item reliability were good, and unidimensionality was confirmed. Mean administration time was 8.2 minutes. INTERPRETATION: The results suggest that the SPQ is a rapid, reliable, and valid tool for assessment of participation-related indicators in schools.

Associations between Adolescent Psychosocial Factors and Disengagement from Education and Employment in Young Adulthood among Individuals with Common Mental Health Problems.

Transition to adulthood can be a challenging developmental task for adolescents with common mental health problems and is linked to adverse outcomes such as 'not in education, employment or training' (NEET). This study investigated longitudinal associations between adolescent psychosocial factors (e.g., self-esteem, aspirations, bullying, physical activity) and later NEET status among individuals with common mental health problems (i.e., depression and anxiety). A secondary data analysis of the Next Steps cohort study was completed using waves 2 and 8. Psychosocial factors, mental health, and background characteristics were captured when participants were aged 15-16 years (wave 2) while still in compulsory education. The 12-item General Health Questionnaire was used to identify adolescents with common mental health problems. The study population consisted of 2224 participants (females 66.8%) of which 1473 (66.2%) were aged 15 years and 751 (33.8%) were aged 16 years in wave 2. The outcome was NEET status at ages 25-26 years (wave 8). The results showed that after adjusting for background characteristics, adolescent self-esteem, locus of control, bullying, physical activity, job aspirations, and attitudes to school predicted NEET status. Educational aspirations, substance use, and behavioural problems were not significantly associated with NEET status. These findings provide new insights into the role of adolescent psychosocial factors in the context of education and employment outcomes for youth at risk and highlight the necessity of targeted mental health support to improve life chances.

Participation as means for adaptation in dementia: a conceptual model.

OBJECTIVES: There are a number of conceptual models of dementia, capturing a range of biopsychosocial factors. Few integrate the lived experience of dementia. The aim of this study was to develop a conceptualisation grounded in the first-hand accounts of living with the condition and reflecting its complexity. METHOD: The study was conducted within an explanatory, critical realist paradigm. An overarching narrative approach, informed by a previously completed systematic review and metasynthesis of research on the lived experience of dementia and the assumptions of complexity theory, was used to guide data collection and analysis. Data were contributed by 31 adults, including 12 people living with dementia and 19 family caregivers. RESULTS: The experience of living with dementia was conceptualised as a process of adaptation through participation, emerging from ongoing, dynamic and nonlinear interactions between the adaptive capacity of a person with dementia and the adaptive capacity within the environment. The proposed conceptual model describes contexts and mechanisms which shape this capacity. It identifies a range of potential outcomes in dementia. These outcomes reflect interactions and the degree of match between the adaptive capacity of a person and the adaptive capacity within the environment. CONCLUSION: By recognising and exploring the potential for adaptation and enduring participation in dementia, findings of this research can support practitioners in facilitating positive outcomes for people affected by the condition.

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

OBJECTIVES: 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 #CRD42017074119. RESULTS: Six retrieved studies published between 2005 and 2017 including 1011 people with dementia and 1188 caregivers were included in the analysis. All data were 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, 0.842]; 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 48 analyses. CONCLUSION: Increased understanding of prevalence of needs of people with dementia and associated heterogeneity can assist in planning services to meet those needs.

Community-based participation of children with and without disabilities.

AIM: To describe and compare the socio-demographic characteristics and community-based participation of children with and without disabilities. METHOD: This cross-sectional study reports data on 1073 children with disabilities (663 males, 410 females) and 11 122 children without disabilities (5617 males, 5505 females) aged 10 to 12 years from the fifth sweep of the Millennium Cohort Study. χ2 was used to explore differences between the two groups. Logistic regression models were used to assess the relationships between childhood disability (dependent variable) and socio-demographic characteristics. Logistic regression models were also used to examine the associations between childhood disability (dependent variable) and participation in community-based activities. RESULTS: Children with disabilities were more likely to be male, have psychosocial and behavioural problems, live in single-parent households, and have a parent with a longstanding illness. Patterns of community-based participation were similar between children with and without disabilities. However, the extent to which the two groups participated differed. Children with disabilities participated with lower frequency in unstructured physical activities (adjusted odds ratio [OR] 2.41; 95% confidence interval [CI]: 1.95-2.99), organized physical activities (adjusted OR 2.29; 95% CI: 1.83-2.86), religious gatherings (adjusted OR 2.08; 95% CI: 1.35-3.20), and getting together with friends (adjusted OR 3.31; 95% CI: 2.61-4.20). INTERPRETATION: Socio-demographic characteristics differed between children with and without disabilities. Children with disabilities had greater restriction in participation compared to peers without disabilities. Participation promoting interventions are required to support the participation of children with disabilities in social and physical activities. WHAT THIS PAPER ADDS: Patterns of community-based participation were similar between children with and without disabilities. Children with disabilities had lower frequency of participation in physical activities, religious gatherings, and getting together with friends.

An enhanced individual placement and support (IPS) intervention based on the Model of Human Occupation (MOHO); a prospective cohort study.

BACKGROUND: Employment is good for physical and mental health, however people with severe mental illness (SMI) are often excluded from employment. Standard Individual Placement and Support (IPS) is effective in supporting around 55% of people with SMI into employment or education. Current research considers enhancements to IPS to improve outcomes for those requiring more complex interventions. Clinicians need to better understand who will benefit from these enhanced IPS interventions. This study offers a new enhanced IPS intervention and an approach to predicting who may achieve successful outcomes. METHODS: This prospective cohort study included people with SMI who participated in an enhanced IPS service and had prolonged absence from employment. Secondary data analysis was conducted of data gathered in routine clinical practice. Univariate analysis coupled with previous research and clinical consultation was used to select variables to be included in the initial model, followed by a backward stepwise approach to model building for the final multiple logistic regression model with an outcome of successful or unsuccessful goal attainment (employment or education). RESULTS: Sixty-three percent of participants in the enhanced IPS successfully attained employment or education. Significant relationships from bivariate analyses were identified between outcomes (employment or education) and seven psychosocial variables. Adapting Routines to Minimise Difficulties, Work Related Goals, and Living in an Area of Lesser Deprivation were found to be significant in predicting employment or education in the final multiple logistic regression model R2 = 0.16 (Hosmer-Lemeshow), 0.19 (Cox-Snell), 0.26 (Nagelkerke). Model χ2(7) = 41.38 p < .001. CONCLUSION: An enhanced IPS service had a 63% rate success in achieving employment or education, higher than comparable studies and provides an alternative to IPS-Lite and IPS-standard for more complex populations. Motivational and habitual psychosocial variables are helpful in predicting who may benefit from an enhanced IPS intervention supporting people after prolonged absence from employment. TRIAL REGISTRATION: NCT04083404 Registered 05 September 2019 (retrospectively registered).

Family factors associated with participation of children with disabilities: a systematic review.

AIM: The aim of this review was to synthesize empirical evidence of family factors associated with participation of children with disabilities aged 5 to 12 years to inform the development of family-centred participation-fostering interventions. METHOD: A systematic search was performed for articles published in English between 2001 and 2017 in MEDLINE, PsycINFO, CINAHL, Scopus, and ASSIA following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Quality of evidence was appraised using the Research Triangle Institute Item Bank. Family factors associated with participation were identified and assessed using a multistage 'semi-quantitative' approach. RESULTS: Thirty studies were included in the review. Four non-modifiable 'status' factors consistently associated with participation were parental ethnicity, parental education, family type, and family socio-economic status. Six modifiable 'process' factors with consistent associations with participation were parental mental and physical health functioning, parental self-efficacy beliefs, parental support, parental time, family preferences, and activity orientation. INTERPRETATION: Rehabilitation professionals should direct their focus towards modifiable family factors as primary targets for family-centred interventions. Strategies that can improve families' access to information, counselling, and community support services are likely to support children's participation by empowering families and optimizing their health and well-being. WHAT THIS PAPER ADDS: Non-modifiable 'status' and modifiable 'process' factors are important in participation of children with disabilities. Disadvantaged family circumstances shaped by status factors are associated with reduced participation. Key process factors for intervention are parental mental and physical health and parental self-efficacy beliefs. Other important process factors for intervention are parental support and time, family preferences, and activity orientation.

FACTORES FAMILIARES ASOCIADOS CON LA PARTICIPACIÓN DE NIÑOS CON DISCAPACIDAD: UN ESTUDIO SISTEMÁTICO: OBJETIVO: El objetivo de esta revisión fue sintetizar la evidencia empírica de los factores familiares asociados con la participación de niños con discapacidad entre los 5 y 12 años para informar el desarrollo de intervenciones que fomentan la participación centrada en la familia METODO: Una búsqueda sistemática fue realizada en artículos publicados en ingles entre 2001 y 2017 en MEDLINE, PsycINFO, CINAHL, Scopus, y ASSIA de acuerdo con los items reportados preferentes para guías de Búsqueda Sistemática y Meta-Análisis. La calidad de la evidencia fue evaluada utilizando el Banco de Items del Research Triangle Institute (RTI). Fueron identificados los factores familiares asociados con la participación y evaluados utilizando un enfoque semicuantitativo de varias etapas. RESULTADOS: Fueron incluidos 30 estudios en esta revisión. Cuatro factores no modificables de ¨estado¨ asociados sistemáticamente con la participación fueron la etnia de los padres, el nivel de educación de los padres, el tipo de familia, y el estatus socioeconómico de las familias. Seis factores de ¨proceso ¨modificables con asociaciones consistentes con la participación fueron el funcionamiento de salud física y mental de los padres, creencia de autoeficacia de los padres, soporte parenteral, tiempo de los padres, preferencias familiares, y orientación a la actividad. INTERPRETACION: Los profesionales de la rehabilitación deben dirigir su foco hacia los factores modificables como objetivo primario para las intervenciones centradas en la familia. Estrategias que puedan mejorar el acceso de las familias a la información , asesoramiento, y servicios de apoyo comunitario que apoyen la participación de los niños y empoderar a las familias y optimizar su salud y bienestar.

FATORES FAMILIARES ASSOCIADOS COM PARTICIPAÇÃO EM CRIANÇAS COM INCAPACIDADES: UMA REVISÃO SISTEMÁTICA: OBJETIVO: O objetivo desta revisão foi sintetizar a evidência empírica de fatores familiares associados com participação de crianças com incapacidades de 5 a 12 anos para informar o desenvolvimento de intevenções centradas na família que promovam a participação. MÉTODO: Uma busca sistemática foi realizada por artigos publicados em ingles entre 2001 e 2007 na Medline, PsycINFO, CINAHL, Scopus, e ASSIA seguindo as diretrizes para Itens preferidos a serem reportados em revisões sistemáticas. A qualidade da evidência foi avaliada usando o Banco de Itens Do Institututo do Triângulo das Pesquisas (ITR). Fatores familiares associados à participação foram identificados e avaliados usando uma abordagem semi-quantitativa multi-estágios. RESULTADOS: Trinta estudos foram incluídos na revisão. Quatro fatores com estado "não-modificável" consistentemente associados com participação foram etnia parental, educação parental, tipo de família e situação sócio-econômica da família. Seis fatores de "processo" modificáveis com associações consistentes com participação foram saúde e funcionamento mental e físico dos pais, auto-eficácia parental, apoio parental, tempo parental, preferências familiares e orientacões para atividades. INTERPRETAÇÃO: Profissionais de reabilitação devem direcionar o foco para fatores familiares potencialmente modificáveis como alvos primários para intervenções centradas na família. Estratégias que podem melhorar o acesso da família a informação, aconselhamento e serviços de suporte na comunidade têm probabilidade de apoiar a participação da criança por empoderar famílias e otimizar sua saúde e bem estar.

An analysis of prescribing data in attention-deficit hyperactivity disorder for adolescents and adults in Scotland.

BACKGROUND: Medication, combined with environmental and psychosocial support, can mitigate adverse outcomes in attention-deficit hyperactivity disorder (ADHD). There is a need for research into regional and national prescription volumes and patterns, especially among adults. AIMS: This study analysed prescribing patterns for medications commonly used to treat ADHD in adolescents and adults. METHOD: Data was extracted from the NHS Scotland Prescribing Information System on prescriptions for 7806 adolescents (aged 10-19 years) and 4998 adults (aged 20-59 years) in 2019. This included medications listed under Section 4.4 of the British National Formulary. We explored 2019 prescription patterns across different regions and estimated ADHD prevalence levels. Additionally, we assessed changes in dispensed prescriptions, defined daily dose and costs, compared with figures from 2010. RESULTS: Between 2010 and 2019, prescriptions for ADHD medications increased (dispensed prescriptions +233.2%, defined daily dose +234.9%, cost +216.6%). Despite these increases, analysis indicated that in 2019, considering a 5% estimated ADHD prevalence among adolescents, 73% were not prescribed medication, increasing to 81% at a 7% estimated prevalence. Similarly, among adults with a 2% estimated prevalence, 91% were not prescribed medication, rising to 96% at a 4% estimated prevalence. Regional disparities were evident, with 41-96% of adolescents and 85-100% of adults, based on ADHD prevalence estimates, not receiving a prescription, depending on area. CONCLUSIONS: Although prescription rates for ADHD medication have increased over time, the data do not indicate excessive use of medication. Instead, they suggest that for some groups there is a lower use of medication compared with expected prevalence figures, especially among adults.

Service-related needs of older people with dementia: perspectives of service users and their unpaid carers.

BACKGROUND: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples' lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs. METHOD: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers. RESULTS: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement. CONCLUSION: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.

Readiness for employment: perceptions of mental health service users.

Work is good for both physical and mental health, and access to work is a basic human right. People with mental health conditions want to work and with the right support can work but are often excluded from the workplace. We explored factors influencing individual's perceptions of their readiness for employment. Participants' narratives focused particularly on personal causation and it's inter-reactions with other aspects of volition, habituation and the environment and highlight a number of key areas, which are discussed in relation to service provision. Sheltered workshops offer support and some structure and routine but may limit an individual's readiness for employment. Services should be evidence based and focused on real work opportunities which fit with individual's interests and values. Occupational therapy theory offers a unique and valuable perspective in understanding perceptions of readiness for employment and occupational therapists offer valid and useful assessments and interventions for vocational rehabilitation.

Vocational rehabilitation: facilitating evidence based practice through participatory action research.

BACKGROUND: Improving vocational rehabilitation in line with the current evidence base is an area of considerable interest. Aims To describe the strategies used by a multidisciplinary team in the initial stages of a participatory action research (PAR) approach to improving a vocational rehabilitation service. METHOD: A literature review and PAR process were completed. One hundred and fifteen participants engaged in multifaceted data collection and analysis, building consensus around key principles for a new vocational rehabilitation service. RESULTS: A synthesis of our literature review and PAR process was developed into a set of principles for practice which we plan to implement across the service. CONCLUSIONS: We have developed methodologies in interdisciplinary collaborations spanning statutory and non-statutory services. We have developed a set of principles for practice and detailed plans for implementation are being drawn up to inform provision in the future.

Prevalence of neurodevelopmental differences and autism in Scottish primary schools 2018-2022.

This study investigated the prevalence of neurodevelopmental needs among children in primary schools in Scotland. Two groups were identified: autistic learners and a larger group of learners who had neurodevelopmental differences. These differences encompassed any need for additional support in various domains, including communication, interaction, emotional regulation, coordination, movement, and cognition. A two-phase process was employed, drawing on data from a cross-sectional study followed by a secondary analysis of a population census. In the first phase, a random sample of 688 children with additional support needs from 22 schools participated. Demographics, support characteristics, and neurodevelopmental needs were identified. Results revealed that 76.89% of children with additional support needs exhibited a need type consistent with a neurodevelopmental difference. In the second phase, data from the Scottish Government Annual Pupil Census, covering all state-provided primary school children between 2018 and 2022, were analyzed. Modeling was conducted using data from the first phase to estimate prevalence of neurodevelopmental differences. Data on autism were directly extracted from the census. Analysis revealed an increase in the prevalence of neurodevelopmental differences and autism. The prevalence of autism rose by 31.98%, with 2.60% of primary school children identified as autistic in 2022. Similarly, the prevalence of neurodevelopmental differences increased by 10.57%, with 16.22% of primary school children exhibiting such differences in 2022. Across 32 localities, regional variations in prevalence were observed. These findings show the substantial number of neurodivergent children within Scottish primary schools and emphasize the need for a neurodevelopmentally informed approach to inclusive education.

Factors influencing junior high school students' perceptions of attending school in Japan.

BACKGROUND: School attendance is a crucial determinant of academic success. Our previous research has identified factors that influence elementary school students' perceptions of attending school, but whether these factors apply to older students remains unclear. We investigated the extent to which the factors identified in the previous research apply to junior high school students and their attitudes toward attending school. METHODS: We hypothesized that students' "perceptions of attending school" was directly influenced by their perceptions of "relationships with friends and teachers," "current circumstances," "subjective health status," and "having people to share experiences and thoughts with." We developed an original questionnaire with 19 items and analyzed data collected from 6245 junior high school students in Japan, using a structural equation model. RESULTS: The final model demonstrated a good fit. Students' "positive perceptions of attending school" was directly and positively influenced by their "positive perceptions of relationships with friends and teachers" and directly and negatively influenced by their "perceptions of poorer subjective health status". Other latent variables directly and positively influenced the perceptions of attending school, but not strongly. Students' perceptions of "relationships with friends and teachers," "current circumstances," and "having people to share experiences and thoughts with" correlated positively with each other. These three latent variables also correlated negatively with "poorer subjective health status." CONCLUSIONS: The role of positive relationships with friends and teachers in shaping students' perceptions of school attendance, coupled with the negative impact of poorer subjective health status, underscores the need for educators to adopt approaches that specifically address these areas. It is crucial to provide support to students in cultivating positive relationships, fostering positive perceptions of school, and offering resources to those who are encountering mental or physical health challenges. Implementing the evidence-based questionnaire developed in this study is recommended to enhance student support and well-being.

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.

Piloting a Home Visual Support Intervention with Families of Autistic Children and Children with Related Needs Aged 0-12.

Visual supports are an important intervention for autistic individuals and others with neurodevelopmental differences. However, families often report limited access to visual supports and lack of information and confidence in their use at home. This pilot study aimed to evaluate the feasibility and effectiveness of a home-based visual supports intervention. METHODS: 29 families with children (n = 20 males; mean age 6.59 years [Range 3.64-12.21 years SD 2.57]) receiving support for autism or related needs participated in the study. Parents engaged in an individualised assessment and intervention process through home visits, completing pre- and post-measures. Qualitative methods were used to explore the parents' experiences of the intervention. RESULTS: The intervention led to a statistically significant improvement in parent-reported quality of life (t28 = 3.09, p = 0.005) and parent-reported perception of autism-specific difficulties (t28 = 2.99, p = 0.006). Parents also reported improved access to resources and relevant information and increased confidence in using visual supports at home. The home visit model was strongly supported by the parents. CONCLUSION: The results provide initial evidence of the acceptability, practicality, and utility of the home-based visual supports intervention. These findings suggest that outreach into the family home may be a beneficial mechanism for delivering interventions related to visual supports. This study highlights the potential of home-based interventions to improve access to resources and information for families and the importance of visual supports in the home setting.

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.

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.

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

Background: 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.

Key characteristics of knowledge transfer and exchange in healthcare: integrative literature review.

AIM: This paper presents the results of a review of literature relating to knowledge transfer and exchange in healthcare. BACKGROUND: Treatment, planning and policy decisions in contemporary nursing and healthcare should be based on sound evidence wherever possible, but research knowledge remains generally underused. Knowledge transfer and exchange initiatives aim to facilitate the accessibility, application and production of evidence and may provide solutions to this challenge. This review was conducted to help inform the design and implementation of knowledge transfer and exchange activities for a large healthcare organization. DATA SOURCES: Databases: ASSIA, Business Source Premier, CINAHL, PsychInfo, Medline and the Cochrane Database of Systematic Reviews. REVIEW METHODS: An integrative literature review was carried out including an extensive literature search. English language systematic reviews, literature reviews, primary quantitative and qualitative papers and grey literature of high relevance evaluating, describing or discussing knowledge transfer or exchange activities in healthcare were included for review (January 1990-September 2009). FINDINGS: Thirty-three papers were reviewed (four systematic reviews, nine literature reviews, one environmental scan, nine empirical studies and ten case studies). CONCLUSION: Robust research into knowledge transfer and exchange in healthcare is limited. Analysis of a wide range of evidence indicates a number of commonly featured characteristics but further evaluation of these activities would benefit their application in facilitating evidence-based practice in nursing.