Parenting Styles and Practices in Enhancing Self-Determination of Children With Intellectual and Developmental Disabilities.

Parenting styles and practices are crucial in promoting the self-determination of children. The purpose of the current study was to investigate the role of parenting styles and practices in enhancing the self-determination of children with/without intellectual and developmental disabilities (IDD). The present study was carried out with a sample of 243 parents of children with/without IDD in Türkiye (Turkey). The results indicated that an authoritative parenting style and autonomy-supportive parenting practices positively affect the degree of child self-determination, whereas permissive and overprotective parenting practices may limit child opportunities in fostering self-determination. The study results also showed that urbanization, higher income, and higher education level of parents positively impacted the degree of child self-determination. Parents of typically developing children reported higher levels of overall self-determination for their typically developing children when compared with children with intellectual disability and autism spectrum disorder. On the other hand, parents of children with mild disabilities reported a higher level of self-determination than both children with moderate and severe disabilities. The results were discussed within the cultural context of the current sample.

Evaluation of a supportive care app for coordinating caring networks: an analysis of the first 19,000 users.

Background: Major illnesses such as cancer, and other traumatic life events, can lead to sudden increases in supportive care needs. This study aimed to describe engagement, acceptability and satisfaction with a supportive care networking app under real-world conditions. Methods: A total of 10,952 individuals used the app during the study period (2018-2022). The app is designed to enable "captains" to assemble a network of friends and family members to provide timely, and individually tailored, supportive care (including assistance with tasks such as taking children to school, cooking meals, grocery shopping, and transport to appointments). Engagement was determined from server data, whilst acceptability and satisfaction were captured using purposed-designed surveys. Results: Users were mostly female (76%) and aged between 30 and 49 years (61%). The most common reason for using the app was sudden illness (web: 81%; mobile: 64%). An average of 42 tasks were requested per network, with a 32% acceptance rate. Significantly more tasks were requested (web: 52.2 tasks per network; mobile: 31.7 tasks per network; p < 0.001) and accepted (web: 43.2%; mobile: 20.2%; p < 0.001) in the web app vs. the mobile app. Task requests in the web app most commonly related to food (43% of requested tasks), social (15% of requested tasks) and children (13% of requested tasks). The task acceptance rate differed by task categories (p < 0.001), with tasks relating to transport, medical appointments and children accepted at the highest rates (56%, 52% and 49%, respectively). Acceptability and satisfaction data suggested that the app was well received and overall, participants were satisfied with the app. Conclusion: Findings suggested that this support care networking app achieved widespread uptake for a wide variety of supportive care tasks. Future research focused on optimizing engagement with the mobile app and examining the effectiveness of the app for improving patient and hospital outcomes is warranted.

Parental habitus in promoting self-determination of children with/without intellectual and developmental disabilities in Türkiye.

BACKGROUND: Enhancing the self-determination of children with intellectual and developmental disabilities (IDD) is a prominent factor in their daily, community, school, or post-school outcomes. Parental practices play a crucial role in promoting self-determination of children with IDD. Families worldwide engage in parenting practices determined by each family's beliefs and values filtered through cultural experiences related to the place of origin, social structure, and living area. AIMS: This study investigated the impact of parental habitus as structured within social and cultural capital on family ratings of child self-determination in two distinct regions of Turkey (Türkiye). Our assumption is that the gap in terms of social, economic, and cultural capital between different districts of the same country affects parental habitus in fostering their children's self-determination. METHOD: Researchers collected information from 232 family members regarding the degree of their children's self-determination in two different geographic areas of Türkiye. We used the American Institutes for Research (AIR) Self-Determination Scale - Parent Form (AIR-SDS-PF questionnaire and a socio-demographic form to collect data. We employed the univariate analysis (two-way ANOVA) to identify the main and interactional effect among variables. RESULTS: Parental habitus depending on where families live, socioeconomic level, and child's disability status was influential in promoting self-determination for their children with IDD and counterparts. CONCLUSIONS: Regional or micro-cultural differences impacting parental dispositions should be considered in developing or planning self-determination interventions for children with/without IDD in the same country.

The Community of Practice for Supporting Families of Persons With Intellectual and Developmental Disabilities.

It is important to continuously support families to improve the lives of people with intellectual and developmental disabilities and their family members. Using a life course approach to address strengths and needs of families, a National Community of Practice, infused with the Charting the LifeCourse framework, focused on systems change to improve policy and practices to enhance the lives of families. A qualitative analysis used the Value Creation framework to evaluate both process and product outcomes of 16 state communities of practice as to changes in knowledge and practices. Results emphasize the relative effectiveness of aspects of policy and overarching practices designed to support people with disabilities and their families in participating states.

Student-directed learning: A catalyst for academic achievement and self-determination for students with intellectual disability.

In this single-case experimental design study, eight adolescents with mild intellectual disability (ID) participated in a 3-month intervention with the Self-Determined Learning Model of Instruction. Findings indicate that student-directed learning may enable students with ID to increase their academic achievements, and the authors explore how this may lead to enhanced self-determination over time. Further data analysis suggests that student-directed learning first of all may have an impact at the level of the environment, such that teachers start to perceive their students with ID as capable agents who can take an active role in their own learning process. This change in teacher perception may lead to students getting more opportunities to practice and refine self-determination skills, which in turn may lead to increased capacity for self-determination. Findings from this study are uplifting, as even brief student-directed learning interventions may trigger positive effects on students' self-determination.

Supporting Families Through the Charting the LifeCourse Framework.

Supporting families who have family members with intellectual and developmental disabilities (IDD) as they move through life is a critical need ( Reynolds, Palmer, & Gotto, 2018 ). The phrase, supporting families, juxtaposes the typical family support paradigm in response to the ongoing shrinkage of federal and state dollars and the recognition that parents and caregivers need services and supports to support their family member with IDD at home ( Amado, Stancliffe, McCarron, & McCallion, 2013 ). Within the family support movement, families are defined in the broadest terms, including those living in the same household, people who are affiliated by birth or choice, and others in the role of helping individuals with IDD succeed in life ( Reynolds et al., 2015 ; Turnbull, Turnbull, Erwin, Soodak, & Shogren, 2015 ).

Foundations for Self-Determination in Early Childhood: Preliminary Preschool Study.

Foundations for self-determination begin in early childhood for children with disabilities with the onset of self-regulation and engagement in activities at home, school, and in the community. This article describes the development and preliminary results of an intervention model that encourages collaborative practices for parents and teachers around short-term goal setting to adjust environments for young children with special needs or at risk for delay. The Foundations Intervention was used with 48 children in authentic early childhood settings and involved parents, teachers, and a facilitator to enhance children's self-regulation and engagement at home and school. Results showed feasibility of the intervention; positive child outcomes in goal attainment, self-regulation, and engagement measures were also evident. When parents and teachers communicated about a child's strengths and needs within routines at home and school, this appeared to strengthen parent and teacher connections and helped children become more engaged or regulated in daily activities.

Progress Monitoring in Inclusive Preschools: Using Children's School Success+Curriculum Framework.

Progress monitoring in inclusive preschool classrooms should describe all children's progress towards general curriculum outcomes and individual children's unique outcomes or IEP goals. This research study used the CSS+ Curriculum Framework and progress monitoring process to assess the outcomes of 73 children on these dimensions. Children's progress monitoring data were analyzed within groupings based on instructional need level (i.e., low, medium, or high) in academic content and social domains. Progress monitoring findings for both the academic and social support level of need groups showed significant progress pre- to post-test on most academic outcomes, but some variation with less consistent gains within the social emotional domain. Goal attainment scaling data demonstrated children's gains toward achieving their social goals (IEP or specific learning goals) were at the expected level between 50% and 71% of the time. Academic-focused goal attainment was at or above the expected level of between 54% and 76% of the time, based on the learning grouping. Teacher implementation of CSS+ Curriculum Framework appeared to impact change in classroom and instructional practices pre-post intervention.

Activation of Bilateral Secondary Somatosensory Cortex With Right Hand Touch Stimulation: A Meta-Analysis of Functional Neuroimaging Studies.

Background: Brain regions involved in processing somatosensory information have been well documented through lesion, post-mortem, animal, and more recently, structural and functional neuroimaging studies. Functional neuroimaging studies characterize brain activation related to somatosensory processing; yet a meta-analysis synthesis of these findings is currently lacking and in-depth knowledge of the regions involved in somatosensory-related tasks may also be confounded by motor influences. Objectives: Our Activation Likelihood Estimate (ALE) meta-analysis sought to quantify brain regions that are involved in the tactile processing of the right (RH) and left hands (LH) separately, with the exclusion of motor related activity. Methods: The majority of studies (n = 41) measured activation associated with RH tactile stimulation. RH activation studies were grouped into those which conducted whole-brain analyses (n = 29) and those which examined specific regions of interest (ROI; n = 12). Few studies examined LH activation, though all were whole-brain studies (N = 7). Results: Meta-analysis of brain activation associated with RH tactile stimulation (whole-brain studies) revealed large clusters of activation in the left primary somatosensory cortex (S1) and bilaterally in the secondary somatosensory cortex (S2; including parietal operculum) and supramarginal gyrus (SMG), as well as the left anterior cingulate. Comparison between findings from RH whole-brain and ROI studies revealed activation as expected, but restricted primarily to S1 and S2 regions. Further, preliminary analyses of LH stimulation studies only, revealed two small clusters within the right S1 and S2 regions, likely limited due to the small number of studies. Contrast analyses revealed the one area of overlap for RH and LH, was right secondary somatosensory region. Conclusions: Findings from the whole-brain meta-analysis of right hand tactile stimulation emphasize the importance of taking into consideration bilateral activation, particularly in secondary somatosensory cortex. Further, the right parietal operculum/S2 region was commonly activated for right and left hand tactile stimulation, suggesting a lateralized pattern of somatosensory activation in right secondary somatosensory region. Implications for further research and for possible differences in right and left hemispheric stroke lesions are discussed.

The Impact of Medical/Behavioral Support Needs on the Supports Needed by Adolescents With Intellectual Disability to Participate in Community Life.

As adolescents with intellectual disability (ID) transition to adulthood, there is a need to plan for effective community-based supports that address the post-school life. There is also a need to plan for the impact of factors (e.g., medical/behavioral support needs) on supports needed for community participation. Data from the Supports Intensity Scale-Adult Version (SIS-A) was used to examine relations between medical/behavior support needs and support needs assessed in the standardized portion of the SIS-A. Results suggested that the presence of medical/behavioral needs had a strong impact on supports needed to participate in the community activities, and that more intensive medical support needs were related to higher support needs in the Home Living, Community Living, and Health and Safety domains.

Adams-Oliver syndrome review of the literature: Refining the diagnostic phenotype.

The Adams-Oliver syndrome (AOS) is defined as aplasia cutis congenita (ACC) with transverse terminal limb defects (TTLD). Frequencies of associated anomalies are not well characterized. Six causative genes have been identified: ARHGAP31, DOCK6, EOGT, RBPJ, NOTCH1, and DLL4. We review 385 previously described individuals (139 non-familial and 246 familial probands and family members) and add clinical data on 13 previously unreported individuals with AOS. In addition to ACC and TTLD, the most commonly associated anomalies included a wide variety of central nervous system (CNS) anomalies and congenital heart defects each seen in 23%. CNS anomalies included structural anomalies, microcephaly, vascular defects, and vascular sequelae. CNS migration defects were common. Cutis marmorata telangiectasia congenita (CMTC) was found in 19% of the study population and other vascular anomalies were seen in 14%. Hemorrhage was listed as the cause of death for five of 25 deaths reported. A relatively large number of non-familial probands were reported to have hepatoportal sclerosis with portal hypertension and esophageal varices. Non-familial probands were more likely to have additional anomalies than were familial probands. The data reported herein provide a basis for refining the diagnostic features of AOS and suggest management recommendations for probands newly diagnosed with AOS. © 2017 Wiley Periodicals, Inc.

Consumer involvement in cancer research: example from a Cancer Network.

BACKGROUND: The involvement of consumers and the general public in improving cancer services is an important component of health services. However, consumer involvement in cancer research is relatively unexplored. The objective of this study was to explore different ways of involving consumers in cancer research in one regional network. METHODS: Thames Valley Cancer Network Consumer Research Partnership (CRP) group was formed in 2009. The group consists of consumers and professionals to help in promoting consumer involvement in Cancer Research in the Thames Valley. This study evaluated the project of consumer involvement in cancer research in the Thames Valley from March 2010 to March 2011. We used different indices to judge the level of consumer involvement: number of projects involving consumers through the group, types of projects, level of involvement (ranged from consultation on research documents to collaborating in preparing grant applications) and the methods of involving consumers in cancer research. RESULTS: Fifteen projects were submitted to the CRP group during the 12-month period studied. Of these, eight projects were clinical trials, three were qualitative research projects, two were patients' surveys and two were non-randomized interventional studies. Seven projects requested consumer involvement on patient information sheets for clinical trials. Of these seven applications, three also requested consumers' help in designing research questionnaires and another three requested that consumers should be involved in their project management group. In addition, four projects involved consumers in the proposal development phase and another four projects asked for advice on how to increase trial recruitment, conduct patient interviews or help with grant applications. CONCLUSIONS: The creation of the CRP and this audit of its activity have documented consumer involvement in cancer research in the Thames Valley. We have clearly shown that consumers can be involved in designing and managing cancer research projects.

STroke imAging pRevention and treatment (START): A longitudinal stroke cohort study: Clinical trials protocol.

RATIONALE: Stroke and poststroke depression are common and have a profound and ongoing impact on an individual's quality of life. However, reliable biological correlates of poststroke depression and functional outcome have not been well established in humans. AIMS: Our aim is to identify biological factors, molecular and imaging, associated with poststroke depression and recovery that may be used to guide more targeted interventions. DESIGN: In a longitudinal cohort study of 200 stroke survivors, the START-STroke imAging pRevention and Treatment cohort, we will examine the relationship between gene expression, regulator proteins, depression, and functional outcome. Stroke survivors will be investigated at baseline, 24 h, three-days, three-months, and 12 months poststroke for blood-based biological associates and at days 3-7, three-months, and 12 months for depression and functional outcomes. A sub-group (n = 100), the PrePARE: Prediction and Prevention to Achieve optimal Recovery Endpoints after stroke cohort, will also be investigated for functional and structural changes in putative depression-related brain networks and for additional cognition and activity participation outcomes. Stroke severity, diet, and lifestyle factors that may influence depression will be monitored. The impact of depression on stroke outcomes and participation in previous life activities will be quantified. STUDY OUTCOMES: Clinical significance lies in the identification of biological factors associated with functional outcome to guide prevention and inform personalized and targeted treatments. Evidence of associations between depression, gene expression and regulator proteins, functional and structural brain changes, lifestyle and functional outcome will provide new insights for mechanism-based models of poststroke depression.

Lesion segmentation from multimodal MRI using random forest following ischemic stroke.

Understanding structure-function relationships in the brain after stroke is reliant not only on the accurate anatomical delineation of the focal ischemic lesion, but also on previous infarcts, remote changes and the presence of white matter hyperintensities. The robust definition of primary stroke boundaries and secondary brain lesions will have significant impact on investigation of brain-behavior relationships and lesion volume correlations with clinical measures after stroke. Here we present an automated approach to identify chronic ischemic infarcts in addition to other white matter pathologies, that may be used to aid the development of post-stroke management strategies. Our approach uses Bayesian-Markov Random Field (MRF) classification to segment probable lesion volumes present on fluid attenuated inversion recovery (FLAIR) MRI. Thereafter, a random forest classification of the information from multimodal (T1-weighted, T2-weighted, FLAIR, and apparent diffusion coefficient (ADC)) MRI images and other context-aware features (within the probable lesion areas) was used to extract areas with high likelihood of being classified as lesions. The final segmentation of the lesion was obtained by thresholding the random forest probabilistic maps. The accuracy of the automated lesion delineation method was assessed in a total of 36 patients (24 male, 12 female, mean age: 64.57±14.23yrs) at 3months after stroke onset and compared with manually segmented lesion volumes by an expert. Accuracy assessment of the automated lesion identification method was performed using the commonly used evaluation metrics. The mean sensitivity of segmentation was measured to be 0.53±0.13 with a mean positive predictive value of 0.75±0.18. The mean lesion volume difference was observed to be 32.32%±21.643% with a high Pearson's correlation of r=0.76 (p<0.0001). The lesion overlap accuracy was measured in terms of Dice similarity coefficient with a mean of 0.60±0.12, while the contour accuracy was observed with a mean surface distance of 3.06mm±3.17mm. The results signify that our method was successful in identifying most of the lesion areas in FLAIR with a low false positive rate.

A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools.

OBJECTIVE: Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are "close enough." We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15-25-year-old age group. METHOD: Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews. RESULTS: The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship. SIGNIFICANCE OF RESULTS: Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.

A meta-analysis of changes in brain activity in clinical depression.

Insights into neurobiological mechanisms of depression are increasingly being sought via brain imaging studies. Our aim was to quantitatively summarize overlap and divergence in regions of altered brain activation associated with depression under emotionally valenced compared to cognitively demanding task conditions, and with reference to intrinsic functional connectivity. We hypothesized differences reflective of task demands. A co-ordinate-based meta-analysis technique, activation likelihood estimation, was used to analyze relevant imaging literature. These studies compared brain activity in depressed adults relative to healthy controls during three conditions: (i) emotionally valenced (cognitively easy) tasks (n = 29); (ii) cognitively demanding tasks (n = 15); and (iii) resting conditions (n = 21). The meta-analyses identified five, eight, and seven significant clusters of altered brain activity under emotion, cognition, and resting conditions, respectively, in depressed individuals compared to healthy controls. Regions of overlap and divergence between pairs of the three separate meta-analyses were quantified. There were no significant regions of overlap between emotion and cognition meta-analyses, but several divergent clusters were found. Cognitively demanding conditions were associated with greater activation of right medial frontal and insula regions while bilateral amygdala was more significantly altered during emotion (cognitively undemanding) conditions; consistent with task demands. Overlap was present in left amygdala and right subcallosal cingulate between emotion and resting meta-analyses, with no significant divergence. Our meta-analyses highlight alteration of common brain regions, during cognitively undemanding emotional tasks and resting conditions but divergence of regions between emotional and cognitively demanding tasks. Regions altered reflect current biological and system-level models of depression and highlight the relationship with task condition and difficulty.