Keiko Shikako-Thomas

Determinants of participation in leisure activities in children and youth with cerebral palsy: Systematic review

Children and youth with cerebral palsy (CP) experience difficulties in their ability to move, problem solve, socialize, and communicate, associated with limitations in activities in all environments. They are at risk for lower participation in social and leisure activities critical in fostering friendships, developing interests, and promoting well-being. Little is known about involvement in leisure activities and their determinants. This systematic review aims to describe participation in leisure activities by children with CP and identify personal and environmental factors that influence participation. The following databases were reviewed—CINAHL, Medline, Cochrane, Web of Science, OTseeker, and REHABDATA—using the keywords participation, cerebral palsy, leisure, and recreation. The literature to date suggests that children with physical disabilities are less involved in leisure activities than their peers; activities are more passive, home based, and lack variety. Several factors influence participation in leisure activities, including age, gender, activity limitations, family preferences and coping, motivation, and environmental resources and supports.

Quality of life and leisure participation in children with neurodevelopmental disabilities: a thematic analysis of the literature

PurposeThe aim of this systematic review was to document evidence of the association between leisure participation and quality of life (QoL) in children with neurodevelopmental disabilities, and to identify the main factors that further clarify this relationship.MethodsAn electronic search of the literature was conducted using Medline, Embase, PsycInfo, CINAHL, ERIC, OT Seeker, and the Cochrane library using relevant MESH heading and key words. An inductive thematic analysis was used to synthesize main findings from the studies. The mixed methods appraisal tool (MMAT) was used to assess the methodological quality of the included studies.ResultsNineteen studies were included in this systematic review. All 19 studies fulfilled most of the criteria outlined by the MMAT for each study design (quantitative, qualitative, and mixed methods). Mixed methods studies had the lowest MMAT scores. Seven themes were identified that further elucidate the important relationships between leisure participation and QoL: active physical leisure participation and physical well-being; leisure participation and self; leisure participation and emotional well-being; leisure participation and social well-being; leisure participation and cognition; leisure preferences and well-being; and negative aspects of leisure participation.ConclusionsThe use of thematic analysis enabled the synthesis of findings from quantitative, qualitative, and mixed methods study designs. Participating in both naturally occurring, spontaneous forms of leisure activities and participating in more structured types of leisure and therapeutic programs that focus on leisure contribute to improving the QoL of children with neurodevelopmental disabilities. A key aspect to consider is the child’s ability to participate in his/her preferred leisure activities. Environmental adaptations may be required to ensure that the leisure opportunities meet the children’s capabilities and contribute positively to their QoL.

Leisure Activity Preferences for 6- To 12-Year-Old Children with Cerebral Palsy.

Aim  The objective was to describe leisure activity preferences of children with cerebral palsy (CP) and their relationship to participation. Factors associated with greater interest in leisure activities were identified.

Play and Be Happy? Leisure Participation and Quality of Life in School-Aged Children with Cerebral Palsy

The objective of this study was to examine the association between leisure participation and quality of life (QoL) in school-age children with cerebral palsy (CP). Leisure participation was assessed using the Childrens Assessment of Participation and Enjoyment (CAPE) and QoL using the Pediatric Quality of Life Inventory (PedsQL). Pearson correlation coefficients were calculated to examine the association between CAPE and PedsQL scores, and a multiple linear regression model was used to estimate QoL predictors. Sixty-three children (mean age 9.7 ± 2.1 years; 39 male) in GMFCS levels I–V were included. Intensity of participation in active-physical activities was significantly correlated with both physical (r = 0.34, P = 0.007) and psychosocial well-being (r = 0.31, P = 0.01). Intensity and diversity of participation in skill-based activities were negatively correlated with physical well-being (r = −0.39, P = 0.001, and r = −0.41, P = 0.001, resp.). Diversity and intensity of participation accounted for 32% (P = 0.002) of the variance for physical well-being and 48% (P < 0.001) when age and gross motor functioning were added. Meaningful and adapted leisure activities appropriate to the childs skills and preferences may foster QoL.

Rehabilitation service utilization in children and youth with cerebral palsy

AIM To describe the pattern of use of rehabilitation services in children and adolescents with cerebral palsy (CP), and to identify factors associated with use. METHODS In this study, parents of 91 school-age children and 167 adolescents with CP completed a questionnaire regarding educational and rehabilitation resources received within the last 6 months. Rehabilitation services included occupational therapy (OT), physical therapy (PT), speech language pathology (SLP), psychology and special education. Demographic characteristics were documented and developmental and functional status was assessed. Relationships between service utilization and sociodemographic factors, functioning and school setting were determined. RESULTS Over half of children (53.2%) and adolescents (57.5%) were in regular schools; however, 41% of these required special education resources. The remainder (42.5-46.8%) was in special schools. The majority of children (84.6%) were receiving at least one rehabilitation service although this decreased (68.1%) in adolescence. PT and OT were most common and services were provided predominantly in the school setting. Services were primarily weekly direct interventions at school age, with weekly interventions or consultations most common for adolescents. Younger age was associated with service receipt at school age only. Children with greater motor limitations, lower IQ and greater activity limitations were more likely to receive OT, PT, SLP or special education. Children in segregated schools were significantly more likely to receive rehabilitation services, when compared with children in regular schools. CONCLUSIONS The majority of children and youth received one or more services. Individuals with greater motor or cognitive challenges were more likely to receive a range of school-based services from rehabilitation specialists. When compared with children of school age, adolescents were less likely to receive services and when provided, services were more likely to be consultative. Services may need to be more optimally organized through childhood to enhance benefits to children with CP across activity limitation profiles.

Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts

Abstract Purpose: To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research. Methods: A scoping review of the scientific literature using five search strategies. Quantitative and qualitative analyses using extracted data. Interpretation of results was iteratively discussed within the team, which included a parent stakeholder. Results: Searches identified 101 candidate papers; 28 were read in full to assess eligibility and 19 were included in the review. People with disabilities and their families were more frequently involved compared to other stakeholders. Stakeholders were often involved in planning and evaluating service delivery. A key issue was identifying stakeholders; strategies used to support their involvement included creating committees, organizing meetings, clarifying roles and offering training. Communication, power sharing and resources influenced how stakeholders could be engaged in the research. Perceived outcomes of stakeholder engagement included the creation of partnerships, facilitating the research process and the application of the results, and empowering stakeholders. Stakeholder engagement outcomes were rarely formally evaluated. Conclusions: There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice. Implications for Rehabilitation Using several strategies to engage various stakeholders throughout the research process is thought to increase the quality of the research and the rehabilitation process by developing proposals and programs responding better to their needs. Engagement strategies need to be better reported and evaluated in the literature. Engagement facilitate uptake of research findings by increasing stakeholders’ awareness of the evidence, the resources available and their own ability to act upon a situation. Factors influencing opportunities for stakeholder engagement need to be better understood.

Behavioral Difficulties in Adolescents With Cerebral Palsy

Behavioral problems are common in children with cerebral palsy; however, little is known about the persistence of these difficulties during adolescence. This study aimed to describe the nature and frequency of behavioral difficulties in adolescents with cerebral palsy and to explore associated factors. Parents of the participants completed the Strengths and Difficulties Questionnaire. Participants’ motor and cognitive abilities, functional status, as well as parental stress were evaluated. Overall, the study enrolled 160 adolescents with cerebral palsy (65 girls, mean age 15.4 ± 2.17 years). Behavioral difficulties were present in 36.9% of the adolescents, with peer problems the most frequently reported (61.9%). Prosocial behaviors were associated with better function (r = 0.24-0.65) whereas hyperactive symptoms were associated with greater limitations (r = –0.19 to –0.55). Weak associations were found between parental stress and externalized problems (r = 0.22−0.24). Behavioral difficulties remained frequent in adolescents with cerebral palsy, particularly in those with greater functional limitations.

Picture Me Playing--A Portrait of Participation and Enjoyment of Leisure Activities in Adolescents with Cerebral Palsy.

In recent years attention has been paid to the participation levels of children and youth with Cerebral Palsy (CP), particularly the extent to which they have the opportunity to be involved in and enjoy leisure activities. The objective of this study is to describe the level of participation and enjoyment in leisure activities among adolescents with CP and to identify potential differences in participation patterns related to sociodemographic attributes. A cross-sectional design was used. Participants were 175 adolescents 12-20 years old (M=15.3; ±2.2), GMFCS I=55/II=43/III=13/IV=18/V=39 who completed the Childrens Assessment of Participation and Enjoyment (CAPE). The types of activities participants engaged in most frequently were social and recreational activities, whereas self-improvement and skill-based activities were least frequent. Social activities were the activities they enjoyed most. In general, participation decreases, as youth grow older. Girls engaged in more self-improvement activities than boys. Adolescents who study in special segregated schools experienced a lower diversity and intensity of engagement in all leisure activity domains. Adolescents who were not ambulatory and those presenting with more severe manual ability limitations participated less in all activity types except skill-based activities. Adolescents with CP place a high value on the ability to engage in activities of their own choosing and on interacting with friends. Engagement in a variety of leisure activities is important for a healthy development. Understanding the leisure patterns and preferences of this population, in addition to the contextual factors, may help in the elaboration of interventions and programs to promote a healthy development for this population.

Promoting Leisure Participation as Part of Health and Well-Being in Children and Youth With Cerebral Palsy

Participation in leisure is a human right and is central to the health of children and youth. The World Health Organization’s International Classification of Functioning, Disability and Health for Children and Youth supported a change in thinking about what outcomes are most relevant in the context of children’s health and places participation as one of the constituent elements of health. Participation is also a fundamental rehabilitation and health promotion outcome for children with cerebral palsy as identified by youth, parents, and health professionals. Several studies have identified individual and environmental factors related to participation in leisure; new studies are now determining the best interventions to promote participation. This article summarizes recent findings and proposes important topics for neurologists to consider in exploring leisure pursuits with children with cerebral palsy and their families and in working with rehabilitation professionals to promote engagement in leisure opportunities as part of integrated care.

Community engagement and knowledge translation: Progress and challenge in autism research:

The last decade has seen significant growth in scientific understanding and public awareness of autism. There is still a long road ahead before this awareness can be matched with parallel improvements in evidence-based practice. The process of translating evidence into community care has been hampered by the seeming disconnect between the mainstream scientific research agenda and the immediate priorities of many communities. The need for community engagement in the process of translating knowledge into impact has been recognized. However, there remains little consensus or empirical data regarding the process of such engagement and how to measure its impact. We shed light on a number of engagement models and tools, previously advocated in health research, as they apply to autism research. Furthermore, we illustrate the utility of such tools in supporting identification of knowledge gaps and priorities, using two community-based case studies. The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs.