Parents' perspectives on participation of young children with attention deficit hyperactivity disorder, developmental coordination disorder, and/ or autism spectrum disorder: A systematic scoping review.

BACKGROUND: During the early years of a child's life, participation is essential for learning and development. Children with disabilities are at risk for decreased participation. The interplay between environment and participation is identified as one of the most important factors influencing successful participation. The objective of this scoping review was to synthesize peer-reviewed literature about barriers and facilitators of participation according to the perspective of parents of children younger than 6 years with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and/ or Developmental Coordination Disorder (DCD). METHODS: The scoping review followed Arksey and O'Malley's framework. Relevant studies were identified by a comprehensive search of scientific databases (PubMed and Web of Science). Studies describing perspectives of parents regarding their child's participation, written in English, and published between 2001 and September 2017 were included. RESULTS: A total of 854 articles were retrieved, with 13 meeting the criteria. Elements contributing to perceived barriers and facilitators were identified and organized according to the International Classification of Functioning, Child-Youth framework. Concepts contained in these studies were linked to "activities and participation" (general tasks and demands, such as bedtime and dinner routines, and social, civic life, such as play and leisure). Environment-focused factors identified were situated on "support and relationships, " "attitudes, " and "services, systems, and policies." CONCLUSION: The review revealed guidelines focusing on family-centred care, communication with, and providing information to parents with young children with developmental disabilities (ADHD, DCD, and/ or ASD).

Updating the Evidence on Functional Capacity Evaluation Methods: A Systematic Review.

Objectives To synthesize the evidence on the psychometrics functional capacity evaluation (FCE) methods. Methods A systematic literature search in nine databases. The resulting articles were screened based on predefined in- and exclusion criteria. Two reviewers independently performed this screening. Included studies were appraised based on their methodological quality. Results The search resulted in 20 eligible studies about nine different FCE methods. The Baltimore Therapeutic Equipment work simulator showed a moderate predictive validity. The Ergo-Kit (EK) showed moderate variability and high inter- and intra-rater reliability. Low discriminative abilities and high convergent validity were found for the EK. Concurrent validity of the EK and the ERGOS Work Simulator was low to moderate. Moderate to high test-retest, inter- and intra-reliability was found in the Isernhagen Work-Systems (IWS) FCE. The predictive validity of the IWS was low. The physical work performance evaluation (PWPE) showed moderate test-retest reliability and moderate to high inter-rater reliability. Low internal and external responsiveness were found for the PWPE, predictive validity was high. The predictive validity of the short-form FCE was also high but need to be further examined on several psychometric properties. Low discriminative and convergent validity were found for the work disability functional assessment battery. The WorkHab showed moderate to high test-retest, inter- and intra-rater reliability. Conclusion Well-known FCE methods have been rigorously studied, but some of the research indicates weaknesses in their reliability and validity. Future research should address how these weaknesses can be overcome.

Participation According to Clinicians Working with Young Children with Developmental Disabilities: A Long Way to Go.

Participation has become an important measure of outcome in child rehabilitation as young children with developmental disabilities are increasingly at risk of decreased participation. Therefore, this study garnered information on clinicians' perspectives regarding perceived facilitators and barriers when rendering participation-based interventions using a qualitative research design. Semi-structured interviews of clinicians (Ns = 12, 25-57 years) were conducted and evaluated via an inductive thematic analysis. Results denote that current mechanisms of providing participation-based interventions resembled traditionally focused interventions; thus, resulting in a knowledge-to-practice gap. Clinicians desired more opportunities to communicate with caregivers and to be able to influence the children' s natural environments. They also identified shortness of time, resources, and rigid health care regulations as barriers hampering the efficacy of participation-based services.

Participation of young children with developmental disabilities: parental needs and strategies, a qualitative thematic analysis.

OBJECTIVES: Participation refers to a person's involvement in activities and roles that provide interaction with others as well as engagement in family and community activities. Young children with developmental disabilities (DD) such as attention deficit hyperactive disorder, autism spectrum disorder and developmental coordination disorder are limited in their participation compared with their typically developing peers. This study aimed to obtain information regarding parental needs and strategies used to enable their child's participation. DESIGN: A thematic inductive approach with in-depth interviews was used to explore parental experiences. Eleven women and two men, between 30 and 40 years of age, who had a child (4-9 years old) with a DD diagnosis based on Diagnostic and Statistical Manual of Mental Disorders criteria, participated in semistructured interviews. RESULTS: Two central themes emerged: parental needs and parental strategies used to enable their child's participation. Parental needs were the following: increasing awareness, ameliorating parental burden, providing tailored interventions and supporting parents in finding suitable leisure activities. Parental strategies aimed at increasing their child's resiliency, attaining maximal fit between activity requirements and child capacity, and creating inclusive opportunities and awareness. CONCLUSIONS: Understanding what families' needs are and how families use and integrate strategies within the context of their daily lives provides practitioners with insights needed to support families' resiliency in promoting their children's participation. The results have implications for professionals as this information can be used to inform, refine, or tailor participation-based and family-centred services.

Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome".

BACKGROUND: "Ehlers-Danlos syndrome" (EDS) is a heritable connective disorder influencing multiple aspects of daily life. Most studies have focused on describing the physical symptoms and level of disability, but little knowledge exists about the psychosocial effects of the pathology. Participation in employment is an aspect that strongly influences quality of life of patients with chronic pathologies. This study, therefore, aimed to explore the lived experiences in employment participation of patients diagnosed with "hypermobile EDS". METHODS: An inductive thematic analysis, using semi-structured interviews was used. Nine patients, purposively selected by a continuum sampling strategy, were included. Interviews were audio-recorded and transcribed verbatim. RESULTS: Data analysis resulted in three main themes: (1) elements assisting participation in employment, (2) limitations in employment participation, and (3) unemployment due to the "hypermobile EDS". On the one hand, the results show that related health complaints can impede employment participation to an important extent. On the other hand, patients also report several aspects of work that can affect their well-being in a positive way. CONCLUSION: There are specific reasons for a person with "hypermobile EDS" to participate in employment. These reasons are different for each person and may even vary in time.Implications for rehabilitation"Hypermobile EDS" greatly impacts activities and participation in daily life. "Living with limitations" is the central theme in the lives of "Hypermobile EDS" patients.Various aspects influence work participation in people with "Hypermobile EDS", such as work pressure, tasks, and transport to work.Work has positive effects in the lives of people with "Hypermobile EDS."Work can create difficulties when the job requirements and tasks do not match the functional abilities of a person with "Hypermobile EDS."

A Qualitative Photo Elicitation Research Study to elicit the perception of young children with Developmental Disabilities such as ADHD and/or DCD and/or ASD on their participation.

Participation, defined as 'involvement in life situations' according to the World Health Organisation, is a well-recognized concept and critical indicator of quality of life. In addition it has become an important outcome measure in child rehabilitation. However, little is known about the level of participation of young children with Developmental Disabilities. The aim of this study was to capture their subjective experiences of participation. An adapted informed consent based on a comic strip was used to get the children's assent. A Photo Elicitation study was used, in which photographs were taken by the children when they were involved in meaningful activities. The photographs were then used to facilitate communication with the children and to initiate in depth-interviews. Forty-seven interviews with 16 children between five and nine years were conducted based on their photographs. This method generated rich data, confirming that young children with Developmental Disabilities were able to inform us accurately on their experiences of participation. Data was analysed by means of an inductive thematic analysis. Results showed that children perceived their participation as satisfying when they can play, learn and join in family gatherings resulting in feelings of inclusion, recognition and belonging. When there are-on occasions-moments that their participation was obstructed, the children used two strategies to resolve it. Or they walked away from it and choose not to participate, or when autonomously motivated for the activity, they relied primarily on their context (i.e. mothers) as enabling their participation. Related to the data, children discussed themes related to their person, activities, connections and mediators between those themes. These themes fit well within earlier and current research on the subject of participation.

Motivation in pediatric motor rehabilitation: A systematic search of the literature using the self-determination theory as a conceptual framework.

OBJECTIVE: Motivation is suggested as an important factor in pediatric motor rehabilitation. Therefore, we reviewed the existing evidence of (motivational) motor rehabilitation paradigms, and how motivation influences rehabilitation outcome using self-determination theory as conceptual framework. METHODS: PubMed and Web-of-Science databases were systematically searched until June 2015. Data were independently extracted and critiqued for quality by three authors. Studies reporting motivational aspects were included. Most studies examined new technology (e.g., virtual reality [VR]). RESULTS: Out of 479 records, three RCT, six case-control, and six non-comparative studies were included with mixed quality. Motivation was rarely reported. Training individualization to the child's capabilities with more variety seemed promising to increase motivation. Motivation increased when the exercises seemed helpful for daily activities. CONCLUSIONS: Motivation in pediatric rehabilitation should be comprehensively assessed within a theoretical framework as there are indications that motivated children have better rehabilitation outcomes, depending on the aspect of motivation.

Application of participation in clinical practice: Key issues.

BACKGROUND: Rehabilitation services are increasingly targeting involvement in daily life. In the International Classification of Functioning, Disability and Health this is referred to as "participation". How-ever, questions have arisen regarding the conceptualization of participation, and consensus is lacking. METHODS: The first phase of this study is a critical review of the literature to detect recurring conceptual problems in the application of participation and how researchers deal with these. The second phase is a systematic review to identify how participation measures are operationalized. RESULTS: The critical review found possible solutions to 4 recurring key limitations: (i) how to deal with ambiguity and vagueness regarding the term "participation"; (ii) how to differentiate between activity and participation; (iii) what is the current empirical knowledge about the subjective aspects of participation; (iv) what are the different ways to measure participation. The systematic review found 18 instruments operationalizing participation in different ways: (i) unidimensional: frequency of performing activities; (ii) unidimensional: limitations in experiencing participation when performing activities; (iii) multidimensional: multiple subjective dimensions when performing activities; and (iv) multidimensional: objective and subjective dimensions. DISCUSSION AND CONCLUSION: Notwithstanding an increasing body of knowledge, some issues remain unclear and how participation is measured is subject to debate. This results in difficulties in the use of participation in clinical practice. However, insight into the current body of knowledge and awareness of shortcomings might help clinicians who aim to apply participation in practice.

The influence of Ehlers-Danlos syndrome - hypermobility type, on motherhood: A phenomenological, hermeneutical study.

BACKGROUND: The consequences of the Ehlers-Danlos Syndrome hypermobility type (EDS-HT) affect many aspects of daily life. "Living with limitations" is a central theme in the life of patients affected by this heritable disorder of connective tissue. The aim of the present study was to explore the lived experiences of women with EDS-HT concerning diagnosis, influence on daily life and becoming and being a mother. METHOD: A phenomenological-hermeneutical study, using in-depth interviews. Patients were selected by a purposive sampling strategy. RESULTS: This study shows that the EDS-HT syndrome affects daily life. Ten woman between 31 and 65 years were interviewed. They have between 2 and 5 children. The data analysis results in six themes. (1) Getting a diagnosis is a relief and supports the choice to become a mother; (2) EDS-HT causes emotional distress, imposes a physical burden and has a major impact on social behavior; (3) EDS-HT demands a restructuring of everyday activities; (4) Children's and mothers' expectations do not correspond; (5) Having a supportive social and physical environment is of major importance; (6) The presence of the child reduces the feeling of illness of the mother. CONCLUSION: The diagnosis of EDS-HT is a catalysing factor in the choice of whether or not to become a mother. EDS-HT has a huge impact on bodily functions, which in turn influences activities and participation. IMPLICATIONS: This study gives insight in the activities of daily life of persons with EDS-HT. Health care professionals can be of great importance to help patients in (re)organizing their lives according to the available energy and in supporting their choices. They can help defining goals and setting priorities in daily life.

The quality of life of young men with Asperger syndrome: a brief report.

Factors influencing quality of life for persons with Asperger syndrome are not yet understood. Men, ages 18 to 21, completed the World Health Organization Quality Of Life measure, the Perceived Support Network Inventory, and a semi-structured interview. Asperger syndrome affects quality of life beyond the obvious social impact. The 12 men with Asperger syndrome reported a significantly lower social and physical quality of life than did the 13 men in the control group. Education, living arrangements, and number of friends were remarkably similar between groups. Those with Asperger syndrome had less positive employment experiences and showed more preference for solitary activities. Interventions need to be based on a holistic model.