Introduction: There is a lack of effective interventions available for Pediatric Physical Therapists (PPTs) to promote a physically active lifestyle in children with physical disabilities. Participatory design methods (co-design) may be helpful in generating insights and developing intervention prototypes for facilitating a physically active lifestyle in children with physical disabilities (6–12 years). Materials and methods: A multidisciplinary development team of designers, developers, and researchers engaged in a co-design process–together with parents, PPTs, and other relevant stakeholders (such as the Dutch Association of PPTs and care sports connectors). In this design process, the team developed prototypes for interventions during three co-creation sessions, four one-week design sprint, living-lab testing and two triangulation sessions. All available co-design data was structured and analyzed by three researchers independently resulting in themes for facilitating physical activity. Results: The data rendered two specific outcomes, (1) knowledge cards containing the insights collected during the co-design process, and (2) eleven intervention prototypes. Based on the generated insights, the following factors seem important when facilitating a physically active lifestyle: a) stimulating self-efficacy; b) stimulating autonomy; c) focusing on possibilities; d) focusing on the needs of the individual child; e) collaborating with stakeholders; f) connecting with a child's environment; and g) meaningful goal setting. Conclusion: This study shows how a co-design process can be successfully applied to generate insights and develop interventions in pediatric rehabilitation. The designed prototypes facilitate the incorporation of behavioral change techniques into pediatric rehabilitation and offer new opportunities to facilitate a physically active lifestyle in children with physical disabilities by PPTs. While promising, further studies should examine the feasibility and effectivity of these prototypes.
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This study aimed (1) to examine the contribution of robot ZORA in achieving therapeutic and educational goals in rehabilitation and special education for children with severe physical disabilities, and (2) to discover the roles professionals attribute to robot ZORA when it is used in robot-based play interventions in rehabilitation and special education for children with severe physical disabilities. A multi-centre mixed methods study was conducted among children with severe physical disabilities in two centres for rehabilitation and one school for special education. The participating children played with robot ZORA six times during a period of 6 weeks, in individual or group sessions. Quantitative data were gathered about the contribution of ZORA in reaching individual goals for all of the participating children, using the Individually Prioritized Problem Assessment (IPPA). Playfulness was measured with a visual analogue scale (0–10) and children could indicate whether they liked the sessions using a scale consisting of smileys. Video-stimulated recall interviews were used to collect qualitative data about the different roles of ZORA. In total, 33 children and 12 professionals participated in the study. The results of the IPPA showed a significant contribution of ZORA to the achievement of (children’s) individual goals. The data gathered using the IPPA during the ZORA-based interventions showed that the largest contributions of robot ZORA lie in the domains of movement skills and communication skills. Playfulness of the sessions was 7.5 on average and 93% of the sessions were evaluated as ‘enjoyable’ by the children. Overall, ZORA could positively contribute to the achievement of individual goals for children with severe physical disabilities. According to the participating professionals the most promising roles in which robot ZORA can be used are motivator, rewarder or instructor.
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Introduction Physical activity levels of children with disabilities are low, as these children and their parents face a wide variety of both personal and environmental barriers. Behavior change techniques support pediatric physical therapists to address these barriers together with parents and children. We developed the What Moves You?! intervention Toolkit (WMY Toolkit) filled with behavioral change tools for use in pediatric physical therapy practice. Objective To evaluate the feasibility of using the WMY Toolkit in daily pediatric physical therapy practice. Methods We conducted a feasibility study with a qualitative approach using semi-structured interviews with pediatric physical therapists (n = 11). After one day of training, the pediatric physical therapists used the WMY Toolkit for a period of 9 weeks, when facilitating physical activity in children with disabilities. We analyzed the transcripts using an inductive thematic analysis followed by a deductive analysis using a feasibility framework. Results For acceptability, pediatric physical therapists found that the toolkit facilitated conversation about physical activity in a creative and playful manner. The working mechanisms identified were in line with the intended working mechanisms during development of the WMY Toolkit, such as focusing on problem solving, self-efficacy and independence. For demand, the pediatric physical therapists mentioned that they were able to use the WMY Toolkit in children with and without disabilities with a broad range of physical activity goals. For implementation, education is important as pediatric physical therapists expressed the need to have sufficient knowledge and to feel confident using the toolkit. For practicality, pediatric physical therapists were positive about the ease of which tools could be adapted for individual children. Some of the design and materials of the toolkit needed attention due to fragility and hygiene. Conclusion The WMY Toolkit is a promising and innovative way to integrate behavior change techniques into pediatric physical therapy practice.
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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If being physically fit is of the outmost importance, then what can be said about the fitness of persons with severe or profound intellectual, visual and motor disabilities? Exactly how could their level of physical fitness be measured? Formulated differently, if a person sees little to nothing and in addition has little comprehension of its immediate environment, then how should one go about testing? How motivated would this person be to be subjected to tests and to perform the tasks as well as possible?' Finding an answer to these questions formed the main incentive for this research. The important concrete results of this research are feasible, reliable, and valid tests for assessing physical fitness of persons with severe or profound intellectual and multiple disabilities, which can be directly implemented into the daily practice.
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BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans.METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded.RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux.CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.
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The current study determined the test-retest reliability and concurrent validity of the Adapted Short QUestionnaire to ASsess Health-enhancing physical activity (Adapted-SQUASH) in adults with disabilities. Before filling in the Adapted-SQUASH twice with a recall period of 2 weeks, participants wore the Actiheart activity monitor up to 1 week. For the test-retest reliability (N = 68), Intraclass correlation coefficients (ICCs) were 0.67 (p < 0.001) for the total activity score (min x intensity/week) and 0.76 (p < 0.001) for the total minutes of activity (min/week). For the concurrent validity (N = 58), the Spearman correlation coefficient was 0.40 (p = 0.002) between the total activity score of the first administration of the Adapted-SQUASH and activity energy expenditure from the Actiheart (kcals kg-1 min-1). The ICC was 0.22 (p = 0.027) between the total minutes of activity assessed with the first administration of the Adapted-SQUASH and Actiheart. The Adapted-SQUASH is an acceptable measure to assess self-reported physical activity in large populations of adults with disabilities but is not applicable at the individual level due to wide limits of agreement. Self-reported physical activity assessed with the Adapted-SQUASH does not accurately represent physical activity assessed with the Actiheart in adults with disabilities, as indicated with a systematic bias between both instruments in the Bland-Altman analysis.
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BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD.METHOD: MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted 'risk of bias tool' for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available.RESULTS: In total, 20 studies were included and analysed. In the meta-analysis, a homogeneous prevalence rate of 70% (CI 65-75%) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity.CONCLUSION: This review provides an overview of the current state of the art research on the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD.
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The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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Objective: To investigate the effects of a school-based once-a-week sports program on physical fitness, physical activity, and cardiometabolic health in children and adolescents with a physical disability. Methods: This controlled clinical trial included 71 children and adolescents from four schools for special education [mean age 13.7 (2.9) years, range 8–19, 55% boys]. Participants had various chronic health conditions including cerebral palsy (37%), other neuromuscular (44%), metabolic (8%), musculoskeletal (7%), and cardiovascular (4%) disorders. Before recruitment and based on the presence of school-based sports, schools were assigned as sport or control group. School-based sports were initiated and provided by motivated experienced physical educators. The sport group (n = 31) participated in a once-a-week school-based sports program for 6 months, which included team sports. The control group (n = 40) followed the regular curriculum. Anaerobic performance was assessed by the Muscle Power Sprint Test. Secondary outcome measures included aerobic performance, VO2 peak, strength, physical activity, blood pressure, arterial stiffness, body composition, and the metabolic profile. Results: A significant improvement of 16% in favor of the sport group was found for anaerobic performance (p = 0.003). In addition, the sport group lost 2.8% more fat mass compared to the control group (p = 0.007). No changes were found for aerobic performance, VO2 peak, physical activity, blood pressure, arterial stiffness, and the metabolic profile. Conclusion: Anaerobic performance and fat mass improved following a school-based sports program. These effects are promising for long-term fitness and health promotion, because sports sessions at school eliminate certain barriers for sports participation and adding a once-a-week sports session showed already positive effects for 6 months.
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