Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder : a descriptive population-based study from Switzerland

Background: Low participation in youth with autism spectrum disorder (ASD) has been reported, but age-related and contextual information is rare. Objective: This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5–11) and adolescents (age: 12–17) with ASD in Switzerland. Method: A cross-sectional design used the German version of the Participation and Environment Measure-Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. Results: Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. Conclusions: This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD

Parents' perceptions: environments and the contextual strategies of parents to support the participation of children and adolescents with autism spectrum disorder : a descriptive population-based study from Switzerland

Environments have a modifying effect on the participation of children and adolescents with autism spectrum disorder (ASD) in all areas of life. This cross-sectional study investigated parental perspectives on supportive or hindering environments and the daily contextual strategies parents used to enhance their children's participation. Qualitative and quantitative data gathered from 115 parents from German-speaking Switzerland using the participation and environment measure-child and youth (PEM-CY) were analyzed. Results revealed 45 environmental supports and barriers at home, at school, and in the community. Contextual strategies were identified in combination with people, activities, time, objects, and places. Parental perspectives on participation and their contextual strategies should be considered in environmental-based interventions to support the participation of children and adolescents with ASD

The feasibility and test-retest reliability of the Dutch Swal-Qol adapted interview version for dysphagic patients with communicative and/or cognitive problems

PURPOSE: The adaptation of the Dutch Swal-Qol questionnaire to an interview format suitable for dysphagic patients with communicative and/or cognitive problems and evaluation of the feasibility and test–retest reliability. METHODS: An observational study with two measurements within a 2-week time period in a sample of 57 stroke patients with dysphagia in a nursing home environment. The interview version of the Swal-Qol was evaluated in the total group and in subgroups of patients with and without communicative and/or cognitive problems. RESULTS: The constructed interview version was considered feasible from an expert’s and patient’s point of view. The overall score and seven subscales of the Swal-Qol showed an excellent test–retest reliability (k > 0.75), and two subscales were considered good (k > 0.60). CONCLUSIONS: This study showed that using a structured, and at the same time flexible, interview format tailored to the individual needs of stroke patients enhances the feasibility and does not compromise the test–retest reliability

Parents' Perceptions: Environments and the Contextual Strategies of Parents to Support the Participation of Children and Adolescents with Autism Spectrum Disorder-A Descriptive Population-Based Study from Switzerland

Environments have a modifying effect on the participation of children and adolescents with autism spectrum disorder (ASD) in all areas of life. This cross-sectional study investigated parental perspectives on supportive or hindering environments and the daily contextual strategies parents used to enhance their children's participation. Qualitative and quantitative data gathered from 115 parents from German-speaking Switzerland using the participation and environment measure-child and youth (PEM-CY) were analyzed. Results revealed 45 environmental supports and barriers at home, at school, and in the community. Contextual strategies were identified in combination with people, activities, time, objects, and places. Parental perspectives on participation and their contextual strategies should be considered in environmental-based interventions to support the participation of children and adolescents with ASD

A Multicenter Randomized Controlled Trial to Compare Subacute 'Treatment as Usual' With and Without Mental Practice Among Persons With Stroke in Dutch Nursing Homes

Objective: Systematic reviews suggest that mental practice as an additional therapy for people with stroke might be effective and suggest that more trials with better defined interventions are needed. This study investigated whether imagining the skilled movement systematically can contribute to a quicker and/or better recovery of stroke patients in long term care. Design: A multicenter randomized controlled trial. Setting: Dutch nursing homes. Participants: Stroke patients in the subacute phase of recovery. Interventions: Study participants were randomly assigned to the control or experimental group. Over a 6-week intervention period, both groups received multi professional therapy as usual. Additionally, patients in the experimental group had instruction on mental practice with a 4-step framework embedded in regular therapy time. Main Outcome: Outcomes were assessed at 6 weeks and 6 months with the patient-perceived effect on performance of daily activities (10-point Numeric Rating Scale). Six secondary outcomes on impairment and activity level were also assessed. Primary analyses were performed according to the intention-totreat principle. Generalized estimating equations (GEE) were used to analyze effects. Results: Thirty-six adult stroke patients (average age 77.8, +/-7.2 years) participated in the trial. No effect in favor of the mental practice intervention on any outcome measure could be detected at either measuring points. Conclusions: This study could not show differences between embedded mental practice and current standard of care. However, stroke pathways in Dutch nursing homes select specific and frail patients, which might have reduced the effects of training