Restricted and repetitive behaviours vary greatly across the autism spectrum, and although not all are problematic some can cause distress and interfere with learning and social opportunities. We ...have, alongside parents, developed a parent group based intervention for families of young children with autism, which aims to offer support to parents and carers; helping them to recognise, understand and learn how to respond to their child's challenging restricted repetitive behaviours.
The study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Managing Repetitive Behaviours (MRB) parent group intervention versus a psychoeducation parent group Learning About Autism (LAA) (n = 250; 125 intervention/125 psychoeducation; ~ 83/site) for parents of young children aged 3-9 years 11 months with a diagnosis of autism. All analyses will be done under intention-to-treat principle. The primary outcome at 24 weeks will use generalised estimating equation (GEE) to compare proportion of children with improved RRB between the MRB group and the LAA group. The GEE model will account for the clustering of children by parent groups using exchangeable working correlation. All secondary outcomes will be analysed in a similar way using appropriate distribution and link function. The economic evaluation will be conducted from the perspective of both NHS costs and family access to local community services. A 'within trial' cost-effectiveness analysis with results reported as the incremental cost per additional child achieving at least the target improvement in CGI-I scale at 24 weeks.
This is an efficacy trial to investigate the clinical and cost-effectiveness of a parent group based intervention designed to help parents understand and manage their child's challenging RRB. If found to be effective, this intervention has the potential to improve the well-being of children and their families, reduce parental stress, greatly enhance community participation and potential for learning, and improve longer-term outcomes.
Trial ID: ISRCTN15550611 Date registered: 07/08/2018. Sponsor and Monitor: Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust R&D Manager Lyndsey Dixon, Address: St Nicholas Hospital, Jubliee Road, Gosforth, Newcastle upon Tyne NE3 3XT, lyndsey.dixon@cntw.nhs.uk , Tel: 0191 246 7222.
Visual supports are recommended in autism spectrum disorder clinical guidelines. They can reduce anxiety, increase predictability, support communication and improve participation. They are ...implemented regularly in schools, but evidence about home visual supports is limited. This article reports results of a scoping literature review, alongside qualitative evaluation with parents and professionals. We report findings from 34 studies, identifying four categories of visual support and heterogeneity in participant characteristics, intervention methods, environments and outcome measures. Qualitative data from questionnaires (n = 101) and focus groups generated key themes about home visual supports, through thematic analysis: (1) Accessibility, (2) Participation-focussed (3) Individualisation, (4) Teaching Methods, (5) Consistency, and (6) Information and Training. We propose consensus with terminology and implications for practice and research.
Purpose: The increase in the number of individuals with disabilities in general education has led to an increased interest in how to best provide support. Despite an emphasis on inclusion and ...participation in policy and practice, defining and describing the support provided for these learners is still an important task.
Method: This multisite, mixed method collective case study reports on 125 education and other staff from seven schools who took part in interviews and focus groups to reflect on a range of topics related to learners with disabilities in high schools. We focused on what the participants did, what they considered to be successful and what their "best" practices were.
Results: Descriptions of practices were rich, nuanced and complex. The analysis identified over 200 "strategies" which were synthesized into two meta-themes and eight subthemes. We discuss the results in the context of an ecological perspective, and the importance of focusing on the full range of influences and outcomes for young people in designing supports.
Conclusions: We have drawn on evidence from this study as a basis for professional development activities and identified that focusing on the environment and the role of practitioners has a potential to improve the inclusion outcomes for older learners with disabilities.
Implications for Rehabilitation
Inclusion is influenced by the physical environment, attitudes, expectations and opportunities, in addition to a learner's skills and abilities.
Schools should focus on the environment and teachers' practices, rather than on what an individual learner can or cannot do.
The practices discussed in this study reflect those that a range of educators and related services personnel agree are realistic, appropriate and effective.
Change may be led by the school management team; however, there are many ways in which all staff can contribute; indeed, approaches will not work effectively unless they are understood and implemented by everyone.
Development and Implementation of the CIRCLE Framework Maciver, Donald; Hunter, Cathleen; Adamson, Amanda ...
International journal of disability, development, and education,
11/2020, Volume:
67, Issue:
6
Journal Article
Peer reviewed
Open access
We report the implementation of a new framework supporting teacher practice for inclusion of children with disabilities in mainstream classrooms. Eight schools in one Scottish authority took part. ...Questionnaire, focus group, and interview data were gathered. Results indicated that the framework was well-received and provided a useful resource for class teachers. The framework was perceived as a feasible method for supporting teachers and related personnel to think systematically about key issues relating to children with disabilities in the classroom. It was suggested that the provision of a common language was supportive of collaborative working. Areas for revision included a system of navigation and simplification in the framework manual.
This study aims to characterize the growth in condition-related knowledge in youth with spina bifida (SB), identify neurocognitive predictors of growth, and examine associations between growth in ...knowledge and subsequent levels of medical self-management skills.
Participants were recruited from a larger longitudinal study involving 140 youth with SB and caregivers, who completed questionnaires and interviews every 2 years over 8 years. The current study included the youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning were assessed via parent and teacher reports and performance-based assessment. Latent growth curves were conducted in Mplus Version 8 (Múthen, L. K., & Múthen, B. O. 1998. Mplus User's Guide. Eighth. Muthén & Muthén) to examine change over time in youth-reported condition-related knowledge. Neurocognitive variables were included as predictors of growth in knowledge and regression analyses were used to predict medical self-management skills from growth in condition-related knowledge.
Youth condition-related knowledge increased linearly. Better youth performance on working memory and attention performance-based tasks predicted a higher intercept for condition-related knowledge at T1, but not slope. Teacher and parent reports of inattention and executive dysfunction were not consistent predictors of intercept and growth. Slope of condition-related knowledge was not predictive of subsequent youth self-management skills.
Youth with SB gain condition-related knowledge over time. However, executive dysfunction and inattention may impede gains in condition-related knowledge. Thus, executive functioning supports, attention-related interventions, and psychoeducation may support condition-related knowledge gains and later medical self-management skills, but further research assessing family and cultural factors is needed.
Objective
The primary goal of this study was to examine the factor structure of a spina bifida (SB) medical responsibilities measure and a medical regimen skills scale across time in families of ...youth with SB.
Method
One-hundred and forty youth with SB and their parents were assessed in both childhood/adolescence and adolescence/young adulthood. The Sharing of SB Medical Responsibilities Scale (SOSBMR) includes 34 items for which participants indicate who is responsible for each task. The SB Independence Survey (SBIS) is composed of 50 SB-specific medical skills items in yes-no format. Confirmatory factor analyses (CFA) were conducted to examine the factor structure of the SOSBMR and SBIS in childhood and adolescence (ages 8–15) and in adolescence/young adulthood (AYA; ages 16–25).
Results
One- and seven-factor CFAs were compared for both measures. For the SBIS, both mother- and father-report were used in childhood; self-report was employed for AYA. For the SOSBMR, only self-report was used for both age groups. Across each rater and time point, the seven-factor models of the SBIS and SOSBMR had adequate to excellent fit and reliability, indicating the ability to use each subscale. In addition, each of the corresponding subscales on the SOSBMR and SBIS were associated with each other across raters and time, showing good concurrent and predictive validity.
Conclusions
From childhood to young adulthood, the subscales of the SOSBMR can be used to examine responsibility across multiple medical tasks and the SBIS can be used to assess medical regimen skills and mastery in young people with SB.
Abstract
Objective
This study examined bidirectional associations between mother- and father-reported medical responsibility and medical skill mastery in youth with spina bifida (SB).
Methods
...Participants were 140 youth with SB and their parents who participated in three waves of a longitudinal study across four years (ages 8–15 years at Time 1). Mother- and father-report of both medical responsibility and medical skill mastery were used, and age and estimated intelligence quotient were included as covariates, in cross-lagged models.
Results
The cross-lagged model provided evidence for significant bidirectional associations between mother-reported medical responsibility and skill mastery across time (root mean square error of approximation=0.09, comparative fix index=0.97). These paths showed that higher levels of child responsibility predicted an increase in skill mastery and that higher levels of mastery predicted an increase in child responsibility across time. Moreover, based on mother-report, sharing of responsibility had stronger effects on increases in skill mastery (Time 1 to Time 2 β=.25, Time 2 to Time 3 β=.27) than skill mastery had on increases in child responsibility (Time 1 to Time 2 β=.08, Time 2 to Time 3 β=.07). The only significant cross-lagged path for father-report was from Time 1 skill mastery to Time 2 responsibility (β=.34).
Conclusions
Mothers perceive a bidirectional relationship between responsibility and skill mastery across time, whereas fathers appear to mainly consider how skills might affect a subsequent increase in responsibility sharing. Thus, it is important to consider both parents’ perspectives when working to increase medical autonomy in youth with SB.
This study examined marital satisfaction among parents of youth with spina bifida (SB) over an 8-year period and investigated the usefulness of the double ABCX model for understanding factors that ...predict change in marital satisfaction across child age.
Data from five time points of a longitudinal investigation of psychosocial outcomes in youth with SB were included. Mothers and fathers of children with SB (aged 8-17) reported on marital satisfaction and components of the double ABCX model. Change in marital satisfaction was examined across child age with components of the double ABCX model, as well as interactions between components, as predictors.
Marital satisfaction was significantly higher in the present sample than in a normative sample of married couples. Although there were no significant changes in marital satisfaction for either parent as a function of child age, there was significant variability for the intercept and slope of maternal and paternal marital satisfaction within the sample. Family support predicted a higher intercept, and mental health symptoms predicted a lower intercept, for maternal and paternal marital satisfaction. More stressors and SB-related family stress predicted a lower intercept for paternal marital satisfaction. Family support and family stress attributed to SB moderated the relationship between child vulnerability and maternal marital satisfaction. Observed family cohesion and child psychosocial quality of life moderated the relationship between family stressors and paternal marital satisfaction.
Findings demonstrate the usefulness of the double ABCX model for this population.
As sluggish cognitive tempo (SCT) shows similar inattention and neuropsychological dysfunction as youth with spina bifida (SB), it is important to examine whether neuropsychological functioning may ...affect the development of SCT in this population. Participants were 140 youth with SB and their parents who participated in five waves of a longitudinal study across eight years (ages 8-15 years at Time 1). At Time 1, teacher-, mother-, and father-report of SCT showed 9%, 8.3%, and 5.3% impairment in SCT respectively compared to other youth in the sample. Growth curves were used to examine changes over time in mother-, father-, and teacher-reported SCT. Four neurocognitive variables were included (attention, working memory, cognitive flexibility, plan/organize) as predictor variables of SCT growth and intercepts. Mother, father, and teacher-report of SCT were included in separate models. Age and shunt status were included as covariates in the growth models. Inattentive symptoms were also included as a covariate in working memory, shift, and plan/organize models. Worse working memory at Time 1 predicted an increase in mother-reported SCT symptoms over eight years (β = −.28) and poorer cognitive shifting skills predicted higher rates of teacher-reported SCT over time (β = −.61). All other neurocognitive variables predicted the intercept, but not the slope of SCT symptoms. Results indicate that worse neurocognitive functioning is associated with higher levels of SCT symptoms and that worse working memory and cognitive flexibility at baseline predicted an increase in SCT symptoms as youth with SB age. It may be important for clinicians to monitor and assess levels of SCT in youth with SB.
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