Barriers and facilitators of sports in children with physical disabilities: a mixed-method study

Abstract

Purpose: This study explored barriers and facilitators of sports participation of children with physical disabilities from the perspective of the children, their parents and their health professionals. Method: Thirty children and 38 parents completed a questionnaire, and 17 professionals were interviewed in a semi-structured way. Data from the three groups were combined in a mixed-method design, after which the results were triangulated. Results: Mean age (SD) of the children was 14.1 (2.9) years old, 58% were boys. Sixty-seven percent of the children had cerebral palsy and 77% participated in sports after school. Most commonly practiced sports were swimming, cycling and football. Children specifically experienced dependency on others as a barrier, parents did not have enough information about sports facilities, and professionals observed that the family’s attitude had influence on the child’s sports participation. Facilitators were health benefits, fun and social contacts. Conclusion: Sports participation of children with physical disabilities is a complex phenomenon because children, their parents and professionals reported different barriers. Sports participation is more physically challenging for children with severe physical disabilities, as their daily activities already require much energy. However, the psychosocial benefits of sports are applicable to all children with physical disabilities.

• Implication for Rehabilitation

• Perceived barriers seemed to differ for children, parents and health professionals, suggesting that sports participation is a complex phenomenon.

• Sports might be more physically challenging for children with severe physical disabilities, as their daily activities already take much energy.

• The psychosocial benefits of sports should be emphasized by rehabilitation professionals when advising children with physical disabilities about sports.

     

Parents’ experiences of participation in physical activities for children with cerebral palsy – protecting and pushing towards independence

Purpose: To explore how parents of children with cerebral palsy (CP) experience their child’s participation in physical activities and to identify facilitators and barriers for being physically active and reducing sedentary behaviour. Methods: Twenty-five parents of sixteen children, aged 8–11 years old with CP, with varying gross motor, cognitive and communicative functions and with different cultural backgrounds, participated in focus group or individual interviews. Content analysis was used for analysis. Results: Five subcategories addressing children’s participation in physical activity were found: “Belonging and taking space in the family”, “Important persons facilitating and hindering”, “Friends important but hard to get”, “Good for the body but challenging” and “Availability and opting out possibilities”. The subcategories built the main category “Protecting and pushing towards independence”, expressing the challenges parents experienced when their child wanted to be physically active. Conclusions: Parents desire competent persons to be available for support in participation in physical activities. They want support in finding friends for their child to be physically active with. Family culture and attitudes affect their child’s motivation for being physically active and should be taken into account when designing interventions for increased participation in physical activities and for reduced sedentary behaviour in children with disabilities.

• Implications for Rehabilitation

• Friends and competent adults facilitate participation in physical activities and reduce sedentary behaviour.

• Information on accessible and tailored physical activities is an important facilitator for participation in physical activities.

• Service planning and design of interventions may be facilitated by taking the individual family culture into account.

     

Exploring types of play in an adapted robotics program for children with disabilities

Purpose: Play is an important occupation in a child’s development. Children with disabilities often have fewer opportunities to engage in meaningful play than typically developing children. The purpose of this study was to explore the types of play (i.e., solitary, parallel and co-operative) within an adapted robotics program for children with disabilities aged 6–8?years.

Method: This study draws on detailed observations of each of the six robotics workshops and interviews with 53 participants (21 children, 21 parents and 11 programme staff).

Results: Our findings showed that four children engaged in solitary play, where all but one showed signs of moving towards parallel play. Six children demonstrated parallel play during all workshops. The remainder of the children had mixed play types play (solitary, parallel and/or co-operative) throughout the robotics workshops. We observed more parallel and co-operative, and less solitary play as the programme progressed. Ten different children displayed co-operative behaviours throughout the workshops. The interviews highlighted how staff supported children’s engagement in the programme. Meanwhile, parents reported on their child’s development of play skills.

Conclusions: An adapted LEGO^® robotics program has potential to develop the play skills of children with disabilities in moving from solitary towards more parallel and co-operative play.

• Implications for rehabilitation

• Educators and clinicians working with children who have disabilities should consider the potential of LEGO^® robotics programs for developing their play skills.

• Clinicians should consider how the extent of their involvement in prompting and facilitating children's engagement and play within a robotics program may influence their ability to interact with their peers.

• Educators and clinicians should incorporate both structured and unstructured free-play elements within a robotics program to facilitate children's social development.

     

Stages of change in physical activity behavior in children and adolescents with cerebral palsy

Abstract

Purpose: To identify facilitators and barriers frequently experienced by families of children with cerebral palsy (CP) and associated with being at the pre-intention, intention and action stages for physical activity. Method: Qualitative study involving in-depth focus group interviews with 33 ambulatory children and adolescents with CP and their parents (n?=?33). These interviews were followed by questionnaires to determine stage of behavior change (i.e. pre-intention, intention and action) related to the child’s participation in physical activity. Results: Families who were classified in the intention stage of behavioral change were more likely to identify environmental barriers related to the social environment and the facility or program than parents at the pre-intention stage. Families who were classified into intention and action stages were more likely to identify facilitators related to parental factors than families at the pre-intention stage. Moreover, at the action stage facilitators were related to the facility/program. Conclusions: The identified facilitators and barriers, organized according to three stages of change (pre-intention, intention and action), provide important theoretical insights into how and why children and adolescents with CP and their parents might change their physical activity behavior.

• Implications for rehabilitation

• Understanding the barriers and facilitators of physical activity for children and adolescents with CP is essential for designing effective interventions to promote participation in this group.

• Using the three stages of change and the identified barriers and facilitators for participation can result in tailored advice to increase physical activity behavior.

     

Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences

Abstract

Purpose: Participation throughout one’s life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). Methods: The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. Results: The interviews revealed participation-facilitating strategies relating to the children’s/adolescent’s proximal environment, such as “Availability and acceptability of the activity”, “Good knowledge about the child” and a “A positive attitude of people close to the child”, as well as strategies related to the children/adolescents themselves: “Sense of belonging”, “Possible for the child/adolescent to understand”, “Opportunities to influence” and “Feeling of being needed”. Conclusions: Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD.

• Implications for Rehabilitation

• Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD).

• Examples of strategies for the child’s/adolescents’ proximal environment include “good knowledge about the child/adolescent”, and, for the child/adolescent, include creating “sense of belonging” and “opportunities to influence”.

• Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities.

• People in the child’s/adolescent’s proximal environment need to set the scene for participation.

     

An exploratory study of how sports and recreation industry personnel perceive the barriers and facilitators of physical activity in children with disability

Abstract

Purpose: To explore the perceived barriers and facilitators to participation in physical activity among children with disability in physical activity and community sports from the perspective of sports and recreation industry personnel. Method: A convenient sample of 24 participants was recruited from delegates attending a symposium on physical activity for organisations in the sport and recreation sector in Victoria, Australia. The participants completed a brief questionnaire. Data were analysed by content analysis using an inductive approach. Results: The participants reported 25 facilitators and 20 barriers to participation for children with disability. The top five reported facilitators were: welcoming providers, support and encouragement from parents or others, inclusive providers, adaptable approaches and accessibility of facilities. The top five reported barriers were: inaccessible facilities, non-inclusive providers, transport, lack of relevant opportunities and cost. Conclusions: Sports industry personnel share a similar perspective to families of potential barriers and facilitators to engagement by children with disability in physical activity and community sports. Policy change was not considered as a facilitator of physical activity, even though four of the top five facilitators identified could be implemented through local policy change.

• Implications for Rehabilitation

• There are multiple factors that interact with each other which influence the participation by children with disability in physical activity and community sports.

• The sports and recreation industry should consider policy change as a relevant way to facilitate participation by children with disability in physical activity.

• More professional development and disability engagement opportunities for sports and recreation industry personnel may help address some of the barriers to participation for children with disability experience.

     

Activities and participation of children with cerebral palsy: parent perspectives

Abstract

Purpose: To explore parents’ views of the activities and participation of children with cerebral palsy (CP) with a range of communicative abilities and the factors (personal and environmental) that influenced these. Methods: Thirteen parents of children with CP aged 4—9 years participated in semi—structured individual interviews. Interviews were recorded, transcribed and analysed thematically. Identified codes and themes were mapped to the domains of the International Classification of Functioning, Disability and Health — Children and Youth Version (ICF-CY). Results: Parents’ responses reflected all ICF-CY domains comprising activity, participation and environmental factors. Codes were primarily mapped to the domains learning and applying knowledge, communication, mobility and interpersonal interactions and relationships. Key barriers identified included aspects of parents’ own interactions with their child (e.g. not offering choices), unfamiliar people and settings, negative attitudes of others and children’s frustration. Facilitators included support received from the child’s family and school, being amongst children, having a familiar routine and the child’s positive disposition. Conclusions: Despite the barriers experienced, children participated in a range of activities. Parents placed importance on communication and its influence on children’s independence, behaviour and relationships. Barriers and facilitators identified highlight aspects of the environment that could be modified through intervention to enhance communication and participation.

• Implications for Rehabilitation

• Children’s activities and participation were largely related to early learning tasks (e.g. literacy), communication, mobility and interactions.

• Intervention aimed at improving activities and participation may address the various child, impairment, social and environment factors identified here as impacting on activities and participation (e.g. the child’s personal characteristics, communication and physical impairments, the support and attitudes of others and the familiarity of the environment).

• Therapists will need to consider (and manage) the potential negative impact communication deficits may have on children’s behaviour, independence and social skills which may in turn detrimentally impact on activity and participation.

     

Communicating about obesity and weight-related topics with children with a physical disability and their families: spina bifida as an example

Purpose: The purpose of this study was to explore the experiences of children with spina bifida (SB), their families and healthcare professionals (HCPs) when discussing weight-related topics. Method: In-depth qualitative interviews were conducted with HCPs from Canadian outpatient SB clinics (n?=?13), children aged 6–18 years with SB (n?=?17) and their parents (n?=?20). Data were analyzed using a phenomenological approach within an interpretative paradigm. Results: Many HCPs were not confident talking about weight, concerned that they would damage relationships with children and families. Parents wanted routine weight surveillance, but were worried about their children’s self-esteem if their weight was discussed. They wanted HCPs to acknowledge the challenges of weight management in children with a physical disability and provide specialized solutions. Children wanted a positively framed and tailored approach to weight discussions, although this had generally not been their experience. Conclusions: Stakeholders describe therapeutic relationships that are currently disconnected around the issue of weight and obesity. However, children, parents and HCPs all believed that discussing this topic was critical. Positively framed, strengths-based and tailored approaches to weight-related discussions are warranted.

• Implications for Rehabilitation

• Rates of overweight and obesity in children and youth with physical disabilities are substantially higher than their typically developing peers.

• Healthcare professionals, children with physical disabilities and families often find weight-related discussions challenging and disconnected.

• Weight-related discussions should be tailored to the child and family’s circumstances and priorities.

• Positively framed and strengths-based approaches to weight-related discussions are warranted.

     

Participation-based therapy for children with physical disabilities

Purpose: Optimizing home and community participation of children with physical disabilities is an important outcome of rehabilitation. Method: A review of literature identified research and theory on participation of children with physical disabilities. The authors’ incorporated current knowledge to conceptualize the experience of optimal participation, formulate principles of participation-based physical and occupational therapy, and develop a five-step process for intervention. A case report was completed to illustrate application to practice. Results: Optimal participation involves the dynamic interaction of determinants (attributes of the child, family, and environment) and dimensions (physical, social, and self engagement) of participation. Real-life experiences enable children to learn new activities and develop skills that optimize their participation and self-determination. Interventions are: goal-oriented, family-centered, collaborative, strengths-based, ecological, and self-determined. A distinguishing feature of intervention is that the therapist’s primary role is to support the child and family to identify challenges to participation and solutions to challenges. The therapist is a consultant, collaborating with the child, family, and community providers to share information, educate, and instruct in ways that build child, family, and community capacity. Conclusion: The model may have utility for collaboration with families and community providers, determining goals for participation, and providing evidence-informed interventions.

Implications for Rehabiliation

• Home and community participation of children with physical disabilities is an important outcome of rehabilitation.

• Optimal participation is conceptualized as the dynamic interaction of determinants (attributes of the child, family, and environment) and dimensions (physical, social, and self engagement) of participation.

• Participation-based physical and occupational therapy is based on the assumption that real-life experiences enable children to learn new activities and develop skills and that the empowerment of families enables them to advocate for the full inclusion and integration of their children in society.

• In participation-based therapy, the therapist is a consultant, collaborating with the child, family, and community providers to share information, educate, and instruct in ways that build child, family, and community capacity.

     

Cultural models of child disability: perspectives of parents in Malaysia

Abstract

Background: This study examined parents’ developmental concerns for their children within the context of systems of care in Malaysia.

Methods: Focus groups and interviews were conducted in peninsular Malaysia and Borneo.

Results: Parents’ perceptions of developmental delay stemmed from three sources: the cultural, resource, and the social environments.

Conclusion: There is a need to develop a medical support system in Malaysia that considers a life-course perspective, including prenatal care, screening/diagnosis, and services. This system should embrace a family-centered approach to diagnosis, referral, intervention, and support with sensitivity to cultural beliefs, family preferences, and barriers to care.

• Implications for Rehabilitation

• Parental perceptions of disability affect the strategies they use to cope.

• This research found that cultural conceptions of disability, available resources, and social support affect parental perceptions of disability.

• The resource environment in Malaysia significantly restricts parents’ ability to cope with their child's disability.

• This research recommended that the medical system of Malaysia develops a life-course perspective to disability to provide a range of care for children with disabilities including prenatal care, screening and rehabilitation or coping services.

     

Adaptation for participation!

Abstract

Purpose: To explore children’s experiences with testing, acquiring and using assistive devices.

Methods: Nine children (six boys, three girls, 9–12?years old, with different physical disability and activity experience, participated in semistructured interviews. The interviews were audio-taped, transcribed and analysed using Systematic text condensation.

Results: Assistive devices were reported to contribute to cope activities that the children otherwise would not have participated in. Several subjects listed the need for a shielded environment when adapting to new equipment. The children highlighted “independence in activities” and “having the opportunity to participate in activities with family and friends” as important for frequent use. Need for assistance and lack of localizations to perform the activities were listed as reasons for less frequent use.

Conclusions: This study reveals that it is useful to map each child’s opportunities for independency, appropriate locations for performing the activity and participation with friends, when considering obtaining assistive devices.

• Implications for Rehabilitation

• The use of assistive devices gives many children with physical disabilities the opportunity to participate in physical activity.

• Improving availability to assistive devices for physical activity should be a priority to help facilitate participation.

• Having opportunities to develop perceptions of competence may be essential for a child’s long term participation in physical activity.

     

The roles of effective communication and client engagement in delivering culturally sensitive care to immigrant parents of children with disabilities

Abstract

Purpose: Delivering pediatric rehabilitation services to immigrant parents of children with disabilities requires the practice of culturally sensitive care. Few studies have examined the specific nature of culturally sensitive care in pediatric rehabilitation, especially the notions of effective communication and client engagement. Method: Interviews were held with 42 therapists (10 social workers, 16 occupational therapists and 16 speech language pathologists) from two locations in Canada (Toronto and Quebec City). Data were analyzed using an inductive content analysis approach. Results: Study themes included the importance and nature of effective communication and client engagement in service delivery involving immigrant parents. Participants discussed using four main types of strategies to engage immigrant parents, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures. Conclusions: The findings illuminate the importance of effective, two-way communication in providing the mutual understanding needed by therapists to engage parents in the intervention process. The findings also richly describe the engagement strategies used by therapists. Clinical implications include recommendations for strategies for therapists to employ to engage this group of parents. Furthermore, the findings are applicable to service provision in general, as engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.

• Implications for Rehabilitation

• Effective communication permeates the delivery of culturally sensitive care and provides mutual understanding, which is fundamental to client engagement.

• The findings illuminate the nature of “partnership” by indicating the role of collaborative therapist strategies in facilitating engagement.

• Four main strategies facilitate effective communication and client engagement, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures.

• Engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.

     

Obesity prevention for children with physical disabilities: a scoping review of physical activity and nutrition interventions

Abstract

Purpose: Children with disabilities are at higher risk of obesity, engage in less physical activity and report poorer quality dietary habits than their non-disabled peers. This study reviewed current evidence on interventions designed to facilitate weight management and/or weight-related behaviors (i.e. physical activity and/or healthy eating habits) in children with physical disabilities. Methods: A scoping review was performed using established methodology. Data from studies meeting specific inclusion criteria were extracted and analyzed using summary statistics, and common characteristics thematically identified. Results: Thirty-four articles were included in the synthesis. No long-term obesity prevention interventions were identified. The majority of research focused upon children with cerebral palsy, and had case study, quasi- or non-experimental designs. All interventions reporting positive outcomes (n?=?18) addressed physical activity, with common themes including using motivational strategies for the child and child self-direction. Incremental increases in workload and engaging in strength training for longer than 15 minutes were also effective. Interventions targeting body weight/composition did not report success in the long term. Conclusions: A robust evidence base is lacking for long-lasting obesity interventions for children with physical disabilities. Current research provides some insights into the specific components that should be considered when planning such interventions in the future.

• Implications for Rehabilitation

• Clinicians should be aware of the high risk of obesity, physical inactivity and poor diet in children with physical disabilities.

• The use of motivational strategies, child direction in activities and incremental increases in workload all appear promising approaches, yet require further evaluation.

• Evidence-based interventions are needed to improve both short- and long-term health and quality of life for children with physical disabilities.

     

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

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.

     

Agreements and disagreements between children and their parents in health-related assessments

Purpose: To systematically review research concerning parent–child agreement in health-related assessments to reveal overall agreement, directions of agreement, and the factors that affect agreement in ratings.

Method: The Uni-Search and five additional databases were searched. Children’s health issues were grouped into psychosocial issues including autism and ADHD, and physical and performance issues including pain. Measures used for comparison were those addressing (a) psychosocial functioning, (b) physical and performance functioning, and (c) health-related quality of life.

Results: Totally, 39 studies met the inclusion criteria, comprising 44 analyses in all since four studies contained more than one analyses. Moderate child–parent agreement was demonstrated in 23 analyses and poor agreement in 20 analyses. Several analyses found more agreement on observable/external than on non-observable/internal domains. Overall, parents considered their children had more difficulties than did the children themselves, although there were indications that for children with physical performance issues, parents may underreport their children’s difficulties in emotional functioning and pain. There were no consistencies in differences between children’s and parent’s ratings on levels of agreement with respect to the children’s health issue, age or gender.

Conclusions: Discrepancies between child and parent reports seem to reflect their different perspectives and not merely inaccuracy or bias.

• Implications for Rehabilitation

• In general, parents consider their children to have more difficulties – or more extensive difficulties – than the children themselves think they have.

• The perspectives of the child and his or her parents should be sought whenever possible since both constitute important information concerning the child´s health and well-being.

• Children with physical and performance issues reported more difficulties than their parents concerning the children’s emotional functioning and pain.

• Clinicians should prioritize obtaining children’s views on subjective aspects such as emotional issues as well as on pain.

     

Differences in patterns of participation in leisure activities in Swedish children with and without disabilities

Abstract

Purpose: To compare participation in leisure activities between Swedish children with and without disabilities and to examine whether age, gender, presence of disabilities, and mother’s educational level influence participation. Method: A Swedish version of the Children’s Assessment of Participation and Enjoyment was used to study the diversity, intensity, and enjoyment of participation in leisure activities of children aged 6 to 17 years. Fifty-five of the children had disabilities and 337 of the children did not have disabilities. A multiple regression analysis was conducted to explore the impact of age, gender, mother’s level of education, and disability on the diversity, intensity, and enjoyment of leisure activities. A t-test for independent samples was used to compare the diversity and intensity of participation between children with and without disabilities. Results: The multiple regression analysis explained 4–36% of the variance of diversity, intensity, and enjoyment. Children with disabilities participated with higher diversity, but with less intensity, than children without disabilities. Younger children had higher levels of enjoyment. Conclusions: Children with disabilities participated in several different activities, but the presence of a disability was associated with lower intensity of participation. The low explanatory value of the investigated variables indicates that the combined effect of several variables needs to be taken into consideration when designing participation interventions.

• Implications for Rehabilitation

• Children with disabilities participated in a high number of activities but with a low intensity compared to children without disabilities. Analysis of the children’s personal and environmental barriers and facilitators is critical to providing the therapist with ideas about which strategies should be implemented to increase participation. Assessment and intervention may need to focus on methods for supporting the children’s autonomy and on creating goals for intervention that focus on activities that are determined by the child based on their interests and desires.

• Age and gender influenced the variance in the diversity and enjoyment outcome and the presence of disability was associated with the intensity outcome.

• Age, gender, parental educational level, and disability only explain a small proportion of the variance in leisure participation patterns. Thus, client-centred and individually tailored interventions are needed that are based on the individual's unique situation.

     

Benefits and barriers to physical activity for individuals with disabilities: a social-relational model of disability perspective

Abstract

Purpose: To provide a qualitative overview of selected research on physical activity (PA) engagement by people with physical disabilities from a social relational model perspective. Method: Selected articles that exemplify some of the paradoxes, nuances, contrasting perspectives and complexities of the knowledge base in this area are discussed within a disability studies framework. Results: PA is arguably more important for people with disabilities relative to people without disabilities although they are quite inactive. Individuals who are physically activity enjoy a range of benefits spanning physiological, emotional, cognitive and social categories. Unfortunately many people cannot enjoy the benefits of PA because of the many medical, psychological, social and environmental barriers they face making PA quite difficult. Conclusions: Rehabilitation professionals can provide a better standard of care to clients if they are aware of the benefits and barriers of PA.

• Implications for Rehabilitation

• Rehabilitation professionals should understand behavior change strategies and their application to people with disabilities in order to help their clients initiate and maintain physical activity (PA).

• Rehabilitation professionals should be aware of how they might convey low PA expectations to their clients and simultaneously understand the unique challenges faced by their clients in attempting to incorporate PA into their lives on a regular basis.

• Rehabilitation professionals should be familiar with local disability friendly exercise facilities and adapted sport programs in order to steer their clients towards such opportunities.

     

A multidimensional model of optimal participation of children with physical disabilities

Abstract

Purpose: To present a conceptual model of optimal participation in recreational and leisure activities for children with physical disabilities. Methods: The conceptualization of the model was based on review of contemporary theories and frameworks, empirical research and the authors’ practice knowledge. A case scenario is used to illustrate application to practice. Results: The model proposes that optimal participation in recreational and leisure activities involves the dynamic interaction of multiple dimensions and determinants of participation. The three dimensions of participation are physical, social and self-engagement. Determinants of participation encompass attributes of the child, family and environment. Experiences of optimal participation are hypothesized to result in long-term benefits including better quality of life, a healthier lifestyle and emotional and psychosocial well-being. Conclusion: Consideration of relevant child, family and environment determinants of dimensions of optimal participation should assist children, families and health care professionals to identify meaningful goals and outcomes and guide the selection and implementation of innovative therapy approaches and methods of service delivery.

• Implications for Rehabilitation

• Optimal participation is proposed to involve the dynamic interaction of physical, social and self-engagement and attributes of the child, family and environment.

• The model emphasizes the importance of self-perceptions and participation experiences of children with physical disabilities.

• Optimal participation may have a positive influence on quality of life, a healthy lifestyle and emotional and psychosocial well-being.

• Knowledge of child, family, and environment determinants of physical, social and self-engagement should assist children, families and professionals in identifying meaningful goals and guiding innovative therapy approaches.

     

“Our child’s significant disability shapes our lives”: experiences of family social participation

Abstract

Purpose: This study explored the stories of parents of youth with severe physical disabilities to understand how they viewed the quality of their family social participation; the barriers to social participation faced as families and the strategies and supports that might be used to reduce these barriers. Method: Ten parents of youth (10–18 years) with severe physical disabilities, recruited through specialist schools, health and disability services, were interviewed using a narratively-oriented interview tool: the Occupational Performance History Interview-II. Interviews were audio-recorded and transcribed verbatim. Narrative and thematic analytic approaches were used to construct each parent’s story of family social participation issues, and to identify themes across stories. Results: Parents used highly structured routines and required substantial resources, particularly adult assistance and financial means, to facilitate family social participation. Needs were greater when the youth was more severely impaired, heavier, incontinent or had fragile health. Parents’ choice of family activities and belief that they could influence the quality, enjoyment and satisfaction derived from family social participation were shaped by past experiences and the perceived benefits of participation. Conclusions: Family social participation relied on flexible supports tailored to families’ needs and preferences. Greater choice and control of resources are central to enabling valued participation.

• Implications for Rehabilitation

• Government resources need to be directed towards improving community based wheelchair accessibility and public toilet facilities for youth with Level V GMFCS-E&R impairments and their families.

• Disability service delivery models need to enable families to choose the types of high quality care and support that will facilitate valued family social participation.

• Clinicians need to be aware that families of the most severely impaired children, who are heavier, incontinent or in fragile health, will require substantially more resources than other families to facilitate their social participation.