Dataset Information

Parents' Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities.

ABSTRACT: Children with profound intellectual and multiple disabilities (PIMD) need adaptations to participate in sports and it is more difficult for them to access these activities. We investigated the effects of adaptive sports in children with PIMD as perceived by their parents. The parents answered a postal questionnaire exploring the effects of adaptive sports during the 3 days following an activity. The questionnaire explored twelve domains of children's daily lives, such as sleep and appetite. We calculated a composite score, including all of these domains, to assess whether the children globally benefited from adaptive sports. Of the families, 27/63 responded (participation 42.9%). Four domains improved after the sports activity in an important proportion of children (improvement in 64.0% of children for wellbeing, 57.6% for mood, 56.0% for comfort and 48.1% for sleep). Among the majority of children, the other eight domains remained mostly stable. Three quarters of parents reported a globally positive effect of adapted physical activities on their child. These findings support the further development and provision of adaptive sports for children with severe neurological impairments.

SUBMITTER: Neyroud MC

PROVIDER: S-EPMC8471413 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature

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Parents' Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities.

Neyroud Marion C MC Newman Christopher J CJ

Children (Basel, Switzerland) 20210916 9

Children with profound intellectual and multiple disabilities (PIMD) need adaptations to participate in sports and it is more difficult for them to access these activities. We investigated the effects of adaptive sports in children with PIMD as perceived by their parents. The parents answered a postal questionnaire exploring the effects of adaptive sports during the 3 days following an activity. The questionnaire explored twelve domains of children's daily lives, such as sleep and appetite. We c ...[more]

PMID: 34572247

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Project description:BackgroundThe transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden.MethodsA descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality's guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family's needs. The main question in the interviews was 'What was your experience with cooperation in the transition process, and what would you do to improve this process?' The interviews were analysed with a thematic approach using systematic text condensation.ResultsThe parents experienced a lack of general information about the 'housing waiting list', level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families' wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents' burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School.ConclusionsTo improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

Project description:Communication interventions have broadened from dialogical meaning-making, assessment approaches, to remote-controlled interactive objects. Yet, interpretation of the mostly pre-or protosymbolic, distinctive, and idiosyncratic movements of children with intellectual disabilities (IDs) or profound intellectual and multiple disabilities (PIMD) using computer-based assistive technology (AT), machine learning (ML), and environment data (ED: location, weather indices and time) remain insufficiently unexplored. We introduce a novel behavior inference computer-based communication-aid AT system structured on machine learning (ML) framework to interpret the movements of children with PIMD/IDs using ED. To establish a stable system, our study aimed to train, cross-validate (10-fold), test and compare the classification accuracy performance of ML classifiers (eXtreme gradient boosting [XGB], support vector machine [SVM], random forest [RF], and neural network [NN]) on classifying the 676 movements to 2, 3, or 7 behavior outcome classes using our proposed dataset recalibration (adding ED to movement datasets) with or without Boruta feature selection (53 child characteristics and movements, and ED-related features). Natural-child-caregiver-dyadic interactions observed in 105 single-dyad video-recorded (30-hour) sessions targeted caregiver-interpreted facial, body, and limb movements of 20 8-to 16-year-old children with PIMD/IDs and simultaneously app-and-sensor-collected ED. Classification accuracy variances and the influences of and the interaction among recalibrated dataset, feature selection, classifiers, and classes on the pooled classification accuracy rates were evaluated using three-way ANOVA. Results revealed that Boruta and NN-trained dataset in class 2 and the non-Boruta SVM-trained dataset in class 3 had >76% accuracy rates. Statistically significant effects indicating high classification rates (>60%) were found among movement datasets: with ED, non-Boruta, class 3, SVM, RF, and NN. Similar trends (>69%) were found in class 2, NN, Boruta-trained movement dataset with ED, and SVM and RF, and non-Boruta-trained movement dataset with ED in class 3. These results support our hypotheses that adding environment data to movement datasets, selecting important features using Boruta, using NN, SVM and RF classifiers, and classifying movements to 2 and 3 behavior outcomes can provide >73.3% accuracy rates, a promising performance for a stable ML-based behavior inference communication-aid AT system for children with PIMD/IDs.

Project description:BackgroundThe care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption.MethodsThe longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care.ResultsAmong the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.).ConclusionsThis study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals.Trial registrationNCT02400528, registered 27/03/2015.

Dataset Information

Parents' Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities.

Publications

Parents' Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities.

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