Barbara Piškur

Cross-cultural validation and psychometric evaluation of the Dutch language version of the Children’s Assessment of Participation and Enjoyment (CAPE) in children with and without physical disabilities

Objective: To assess construct validity, test—retest reliability and inter-interviewer reliability of the intensity dimension of the Children’s Assessment of Participation and Enjoyment (CAPE) for children with and without physical disabilities in the Netherlands. Subjects: In total, 232 children aged 6—18 years (110 male, 122 female) participated. Seventy-four children with various physical disabilities and 158 without a disability. Design: Participants completed the CAPE and the Peabody Picture Vocabulary Test. In addition, parents of 142 children were interviewed using the Vineland Adaptive Behavior Scales and the Family Environment Scale. For 71 children test— retest reliability and for 60 children inter-interviewer reliability were assessed. Validity was examined by assessing differences in participation intensity in children with disabilities versus without a physical disability, boys versus girls, and younger versus older children. In addition, 13 hypotheses regarding participation, child and family variables were examined. Results: Validity of the CAPE was supported by significant differences in participation for subgroups. Participation differed significantly in children with and without disabilities. Girls participated more in all activities. Older children participated more in social activities and self-improvement activities, younger children participated more in recreational activities. Validity of the CAPE was further supported with significant correlation coefficients in 8 out of 13 hypotheses. Both test—retest and inter-interviewer reliability were good to excellent. Conclusions: The findings indicate that the Dutch language version of the CAPE is a reliable and valid instrument to measure participation in recreation and leisure activities for children with and without physical disabilities aged 6—18 years.

Participation and social participation: are they distinct concepts?

Introduction: The concept of participation has been extensively used in health and social care literature since the World Health Organization introduced its description in the International Classification of Functioning, Disability and Health (ICF) in 2001. More recently, the concept of social participation is frequently used in research articles and policy reports. However, in the ICF, no specific definition exists for social participation, and an explanation of differences between the concepts is not available. Aim: The central question in this discussion article is whether participation, as defined by the ICF, and social participation are distinct concepts. This article illustrates the concepts of participation and social participation, presents a critical discussion of their definitions, followed by implications for rehabilitation and possible future directions. Discussion: A clear definition for participation or social participation does not yet exist. Definitions for social participation differ from each other and are not sufficiently distinct from the ICF definition of participation. Although the ICF is regarded an important conceptual framework, it is criticised for not being comprehensive. The relevance of societal involvement of clients is evident for rehabilitation, but the current ICF definition of participation does not sufficiently capture societal involvement. Conclusion: Changing the ICF’s definition of participation towards social roles would overcome a number of its shortcomings. Societal involvement would then be understood in the light of social roles. Consequently, there would be no need to make a distinction between social participation and participation.

Parents’ actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review

BackgroundPediatric rehabilitation considers Family-centered service (FCS) as a way to increase participation of children with a physical disability in daily life. An important principal is that parents greatly contribute to their child’s participation at school, at home, and in the community. However, it is unclear what kind of information is available from literature about what parents actually do to support their child’s participation and what problems and needs they experience? Hence, the aim of this study was to provide an overview of the actions, challenges, and needs of parents in enabling participation of their child with a physical disability that is neurological and non-progressive in nature.MethodsScoping review with extensive literature search (September 2011) and a thematic analysis to synthesize findings.ResultsFourteen relevant articles revealed two major themes: ‘parents enable and support performance of meaningful activities’ and ‘parents enable, change and use the environment’. Each theme holds a number of actions (e.g. choosing the right type of meaningful activities for facilitating social contacts) and challenges (e.g. negative attitudes of other people). Less information is available about the needs of parents.ConclusionsThis study indicates that parents apply a broad range of strategies to support participation of their children. They experience many challenges, especially as a result of constraints in the social and physical environments. However, this review also shows that little is known about needs of parents in facilitating participation. As Family-centered service (FCS) philosophy is all about the needs of the child and the family, it is essential to further investigate the needs of the parents and to understand if and to what extent they wish to be supported in enabling their child’s participation in daily life.

Social participation: Redesign of education, research, and practice in occupational therapy

Abstract There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the persons occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as “health literacy and self-management”, “Web 2.0 social media”, “empowering communities”, and “Nothing About Us Without Us” increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.

Social participation: Redesign of education, research, and practice in occupational therapy*: Previously published in Scandinavian Journal of Occupational Therapy 2013; 20: 2–8

Abstract There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the persons occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as “health literacy and self-management”, “Web 2.0 social media”, “empowering communities”, and “Nothing About Us Without Us” increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.

The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community

Abstract Purpose: The aim of this study was to provide an in-depth exploration and understanding of parents’ thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child’s participation at home, at school and in the community. Method: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. Results: Analysis revealed three super-ordinate themes: “Parents’ experiences and concerns about systems, laws and regulations”, “Parents’ experiences and thoughts about physical and/or social environment” and “Parents’ experiences and feelings of finding and/or enabling an activity”. Parents’ often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. Conclusions: In-depth exploration and understanding of parents’ articulated matters must be shared and taken seriously by policymakers and service providers. Parents’ knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability. Implications for Rehabilitation To achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child’s participation ought to be acknowledged. Active use of parents’ experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation. Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.

Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research

Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5‐year coaching programme.

Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community : a qualitative diary study

BackgroundParents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review.MethodsA qualitative research inquiry was performed based on using a diary over a 7-day period to gather data. To systematically organise data into a structured format, content analysis has been applied using both inductive and deductive reasoning guided by the existing preliminary thematic framework.ResultsAnalysis of the eligible diaries shows that the actions mentioned by the 47 parents describe several efforts to enhance participation of their children with a physical disability by using, enabling, or changing the social and physical environment, or by supporting their child to perform or engage in meaningful activities. Those parents’ actions are primarily a result of challenges caused by restrictions in social and physical environments. Parental responses highlighted, above all, the need for environments designed for all people. Based on the findings a redefined thematic framework is presented.ConclusionsParents’ actions, challenges, and needs are mainly directed towards the social or/and physical environment. The presented thematic framework can offer practitioners knowledge to support parents. More work is necessary to provide tailored approaches. Paediatric rehabilitation may need to address the importance of the environment on the participation of a child with a physical disability.

Supporting and hindering environments for participation of adolescents diagnosed with autism spectrum disorder: A scoping review

The influence of a person’s environment and its modifying potential on participation is well recognized for most childhood disabilities, but scarcely studied for adolescents with autism spectrum disorder (ASD). A scoping review was conducted, the aim of which was to map the existing literature about supporting and hindering environments for the participation of adolescents with ASD. Sources of scientific evidence were searched for in four databases. Inclusion criteria were the perspectives of adolescents between 12 and 21, families, peers, or significant others; ecologic validity; and a clear connection between environment and participation. The publication dates ranged from 2001 to 2014 and partly up to 2018. The International Classification of Functioning, Disability and Health (ICF) served as the guiding framework for inclusion/exclusion during the selection process. Thematic analysis was performed by five independent reviewers. Results were additionally validated by stakeholders. This scoping review identified 5528 articles, and finally included 31 studies. Two main themes were found: “providing security” indicates how the environment, and specifically the parental, physical, and informational environments, have a securing or intimidating effect. The second theme, “helping to connect”, indicates which environments support or hinder social relationships or social activities, and hence participation. An additional third main theme, “tension in participation”, relates to ambiguities that seem essential to understand participation or isolation of adolescents with ASD. Results show that participation is a value-laden concept. This research widens the field of dealing with adolescents with ASD, as it directs attention towards the responsibility of the environment regarding participation.