Community fitness programs: what is available for children and youth with motor disabilities and what do parents want?

Physical & Occupational Therapy in Pediatrics, 35(1):73–87, 2015 C 2015 by Informa Healthcare USA, Inc. Available online at http://informahealthcare.com/potp DOI: 10.3109/01942638.2014.990550

Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Hong Kong Libraries on 05/09/15 For personal use only.

ORIGINAL RESEARCH

Community Fitness Programs: What Is Available for Children and Youth with Motor Disabilities and What Do Parents Want? Lesley Wiart1,2 , Johanna Darrah2 , Michelle Kelly3 , & David Legg4 1

Department of Clinical Support, Glenrose Rehabilitation Hospital, Edmonton, Alberta, Canada, 2 Department of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada, 3 Private Practice Physical Therapist, Calgary, Alberta, Canada, 4 Department of Physical Education and Recreation Studies, Mount Royal University, Calgary, Alberta, Canada

ABSTRACT. Background: Physical activity is recognized as a rehabilitation approach for individuals with motor disabilities. Objectives: To determine whether community fitness programs were accommodating children and youth with motor disabilities, and to understand family perspectives on important outcomes related to fitness programs. Design: Telephone survey and qualitative interviews. Participants and settings: Representatives of 61 fitness programs/facilities and 13 parents of children with motor disabilities. Methods: Telephone survey (facilities) and qualitative interviews (parents). Results: 24.6% of programs reported lack of wheelchair accessibility. Only 9.8% of programs and facilities required their staff to have training to support individuals with disabilities. Parents discussed barriers, including lack of staff support and challenges with finding information about community programs. Parents focused on the social benefits of fitness programs. Conclusions/significance: Additional efforts toward reducing access barriers are needed. Parents’ focus on social outcomes has direct implications on the design and evaluation of fitness programs. KEYWORDS.

accessibility, community, fitness, motor disability

Fitness programs for children and youth with motor disabilities are emerging as an innovative alternative to traditional individual therapy sessions (Damiano, 2006; Fragala-Pinkham et al., 2005; George et al., 2011; Johnson, 2009). These programs are primarily aimed at improving musculoskeletal and cardiorespiratory outcomes such as muscle strength, endurance, flexibility, and aerobic and anaerobic capacity (Rogers et al., 2008; Verschuren et al., 2008) and preventing secondary conditions such as osteoporosis, hypertension, and cardiovascular disease (Rimmer & Rowland, 2008). Research suggests that fitness programs may be effective for improving Address correspondence to: Dr. Lesley Wiart, Rm. 261 GE, Glenrose Rehabilitation Hospital, Edmonton, Alberta T5B 0B7, Canada (E-mail: [email protected]). (Received 23 October 2014; accepted 15 November 2014)

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some of these outcomes. For example, physical activity of sufficient frequency and intensity for children and youth with cerebral palsy may increase aerobic capacity (Rogers et al., 2008; Verschuren et al., 2008) and muscle strength (Dodd et al., 2002; Verschuren et al., 2008). Clinically, it is assumed that improving these impairment level outcomes will translate into improved functional outcomes and participation in activities that are meaningful to the child and family. However, evidence supporting the link between improved musculoskeletal and cardiorespiratory outcomes and enhanced functional abilities and participation is inconclusive (Butler et al., 2010; Dodd et al., 2002; Rogers et al., 2008). The concept of fitness programs as a therapeutical approach is ideally aligned with the perspective of children and youth with disabilities participating in activities within their communities. Inclusive community fitness programs may enhance engagement of families with children with disabilities in their communities (Snowdon, 2012). Community-based fitness therapy programs may also promote a longterm interest in fitness and situate therapy into a social rather than a medical model of service delivery. In spite of the importance of translating physical activity programs into community-settings, the majority of research evaluating the effectiveness of fitness programs with individuals with disabilities has been conducted in clinical and laboratory settings (Rimmer & Rowland, 2008) with an emphasis on affecting change in musculoskeletal and cardiorespiratory outcomes. Improving these outcomes requires a commitment to an exercise program for at least twice per week. The American Academy of Pediatrics recommends strength training for a minimum of 2–4 times per week for 20–30 min to increase muscle strength (Washington et al., 2001). The Canadian Society for Exercise Physiology recommends strength training on 2–3 non-consecutive days per week (Behm et al., 2008). Can existing community fitness facilities deliver this intensity of exercise to youth and adolescents with motor disabilities? Access to community fitness programs can be affected by a variety of factors, including environmental barriers (including equipment and lack of transportation), economic issues, lack of information, psychological and emotional barriers, and policy barriers (Rimmer et al., 2004b). While several studies primarily have examined barriers to access to community fitness programs (Arbour-Nicitopouos & Ginis, 2011; Cardinal & Spaziani, 2003; Rimmer et al., 2004a, 2004b), information about the actual use of community fitness programs by children and youth is sparse. In addition to understanding availability and accessibility of fitness programs and facilities in communities, it is also important to understand the expectations of families when they enrol their children in community fitness programs. Is improvement in their children’s fitness levels their main goal, or are they attracted to community fitness programs because of anticipated social and recreational benefits for their children? Can they commit to exercise programs to the extent required to achieve improvement on physiological parameters? Families with children with disabilities often feel overwhelmed with the number of commitments they already have (Ray, 2002; Wiart et al., 2010). If participation in community fitness programs (i.e., exercise programs in private or public fitness facilities) is becoming a new therapy model, it is important to understand both the capability of existing fitness programs to offer high quality programs to persons with motor disabilities and the expectations of families when they access community fitness programs.

Community Fitness Programs

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OBJECTIVES


The specific objectives of this study were to determine: (a) what services and supports existed within facilities that reported that children with motor disabilities were enrolled in their programs, and (b) whether families felt that their needs regarding community fitness programs were met, the challenges or barriers to access, and expected outcomes that are important to them.

METHODS We conducted an environmental scan via telephone interviews with fitness facility personnel to determine whether and how community-based fitness programs and facilities were accommodating children and youth with motor disabilities. Individual and focus group interviews with parents of children and youth with motor disabilities were used to understand their experiences and their reasons for using community fitness programs.

Environmental Scan Participants We identified 236 fitness programs and facilities that provided recreational sport or fitness programming to children in two large urban centers (Calgary and Edmonton) in the province of Alberta, Canada via internet searches. In addition, during their interviews, program representatives identified additional programs. Calgary and Edmonton are the two largest municipalities in Alberta with populations of 1,096,833 (City of Calgary, 2012) and 812,201 (City of Edmonton, 2012), respectively. Identified programs and facilities were contacted by telephone to determine eligibility to participate in the study. Programs were eligible for an interview if they had children and/or adolescents with disabilities, aged 7–18 years, enrolled in their program or accessing their facility at the time of the initial telephone contact, and if fitness (not recreation) was a focus of the program. A flow diagram of the sample selection process is presented in Figure 1. Nine of the 21 sports clubs identified (42.8%) were eliminated from the sample because they reported that children with motor disabilities were not eligible to participate in their clubs. We were unable to contact nine programs for individuals with disabilities (32% of the programs for persons with disabilities originally identified). In total, contact with these programs was attempted 46 times before they were excluded from the sample. Of the 171 programs contacted by telephone, 61 programs and facilities were eligible to participate: 2 sports clubs, 19 programs specifically for individuals with disabilities, 37 community fitness facilities, and 3 privately owned fitness facilities. A total of 110 programs were excluded because they refused participation, children with motor disabilities were not eligible to participate in the program, the program did not have any children with motor disabilities enrolled at the time they were contacted, or fitness was not the focus of the program.

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• • • •

236 programs and facilies idenﬁed Sports clubs (n=21) Programs for individuals with disabilies (n=28) Public community centres (n=53) Private facilies (n-134)

65 eliminated from sample


171 contacted by telephone

110 ineligible

Final sample (n=61) • Sports clubs (n=2) • Programs for individuals with disabilies (n=19) • Public community centres (n=37) • Private facilies (n=3)

• Unable to contact (either invalid phone number or at least 3 aempts to contact were made)

• • • • •

Refusal to parcipate (n=4) Children ineligible or not currently enrolled in program (n=20) Children with motor disabilies ineligible (n=18) Children with motor disabilies not aending program/facility at me of telephone contact (n=67) Focus on recreaon and not ﬁtness (n=1)

FIGURE 1. Flow diagram of survey recruitment process.

Data Collection The survey, developed for the study, included questions about whether individuals with disabilities would be able to participate in all programs/classes and facilities within the centers, whether the programs and facilities offered physical activity that could theoretically improve fitness levels (i.e., physical activities offered for at least twice per week), outcomes used for program evaluation, physical accessibility for individuals who use wheelchairs, the types of supports available for individuals with disabilities, and staff training. The survey was pilot-tested with two fitness facility representatives who provided feedback related to language and improving clarity of the questions. Data Analysis Responses were coded and manually entered into SPSS (PASW Statistics 18). Proportions, mean values, and standard deviations were calculated for descriptive data. Chi square analyses were used to evaluate differences between inclusive programs and programs specifically for individuals with disabilities regarding their methods of evaluation and the provision of supports for individuals with disabilities. Interviews with Parents Participants Program managers of pediatric rehabilitation programs in two urban centers selected children and youth aged 7–18 years with motor disabilities who had accessed services from their programs within the past year and mailed invitations to their


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parents. Eighteen parents indicated interest in participating. Nine parents representing eight families attended one of the two focus groups, and four parents completed individual telephone interviews to share their experiences with accessing community-based fitness programs for their children and the outcomes related to their children’s participation in fitness programs that were important to them.


Data Collection Parents completed a questionnaire that included questions about the number of children in their household, their child’s medical diagnosis, gross motor function level, and whether or not their child was currently accessing a fitness program or facility. Parents classified their children’s gross motor abilities using the Gross Motor Function Classification System (GMFCS) (Palisano et al., 1997). While the GMFCS has only been validated for use with children with diagnoses of cerebral palsy (Palisano et al., 1997) and Down syndrome (Bodkin et al., 2003), it served as a valuable tool to understand the motor abilities of the children with other diagnoses whose parents participated in the interviews. Parents can reliably identify the GMFCS levels of their children (Morris et al., 2004). Descriptive information about the participants and their children is included in Table 1. We used a semi-structured interview guide (Figure 2) to conduct the focus groups and individual interviews. Parents were encouraged to share their stories related to community-based fitness programs, including their experiences with access, their preferred program structure and format, the supports that made participation in community fitness programs easier for them, and the outcomes related to fitness programs that they considered important. All interviews were digitally recorded and transcribed verbatim. Participants were identified by a participant number in interview transcripts to ensure relevant context was considered. For example, the TABLE 1. Descriptive Information About the Focus Group and Individual Interview Participants Relationship with child

Interview format

Age of child (years)

1 2 3 4 5

Mother∗ Father∗ Mother Mother Mother

FG∗∗ FG FG FG II

16 16 16 16 16

6

Mother

II

7

7

Mother

II

11

8 9 10 11 12 13

Father Mother Father Father Mother Father

II FG FG FG FG FG

10 12 17 13 15 14

Participant #

∗

Medical diagnosis

GMFCS level

Currently attending fitness program

Cerebral palsy Cerebral palsy Myelomeningocele Cerebral palsy Cerebral palsy and autism Developmental coordination disorder Cerebral palsy and autism Thoracic lipoma Myelomeningocele Cerebral palsy Cerebral palsy Cerebral palsy Cerebral palsy

4 4 2 1 4

Yes Yes No No Yes

1

Yes

3

No

1 2 5 2 2 1

No Yes No Yes No No

FG = focus group, II = individual interview, ∗∗ married couple.


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Wiart et al. 1. Please share your experiences related to community-based fitness programs for your child. We are talking about any exercise programs in the community including fitness centres or community sports associations. 2. Is your families’ need for community fitness programs being met? 3. Was there anything that made it challenging for your child to use the facilities or access the program? [PROBE- If barriers identified, do you have any suggestions for addressing those barriers?] Was there anything that made it easier for your child to use the facilities or access a program? 4. What type of community fitness program would work for your child and family? [PROBE- segregated or integrated, what types of supports would be helpful, should the program work in collaboration with your child’s therapist, type of activity] 5. We are very interested in knowing what you want to get out of fitness programs for your child [PROBE- social, fitness, physiological outcomes, improve functional skills] FIGURE 2. Interview questions (focus group and individual interview).

child’s motor functioning and previous experience with physical activity programs provided valuable context for the interpretation of preferences regarding preferred program format. Data Analysis Method of data analysis described by Kvale (1996) was used for the qualitative analysis. Two members of the research team read the transcripts and independently identified statements that revealed information about parents’ experiences with community fitness programs and the outcomes related to physical activity programs that were important to them. The team members met and discussed the codes, addressed any discrepancies, and then developed themes by grouping related excerpts together into categories. The third member of the team read all interview transcripts and provided input on the development of the themes.

RESULTS Environmental Scan In total, 36 interviews were conducted, representing 61 programs or facilities. Two interviews represented multiple sites of city fitness programs with the same policies (one interview represented 12 sites and another 15). Programs interviews offered a range of fitness opportunities, including sports programs, weight training, aerobic fitness classes, swimming programs, and dance-based fitness classes. All participating sites indicated they would include children with milder motor disabilities (walks with a cane or without mobility aids), but three of the 61 programs (4.9%) indicated that they could not accommodate a child or youth who uses a wheelchair. Three programs indicated that they could not accommodate a child with a mild cognitive impairment. Eight of the 61 programs (13.1%) would not include children with more significant cognitive impairments. In total, 15 of the 61 programs and facilities (24.6%) indicated their facilities were not accessible to individuals who use wheelchairs.



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Results related to reported frequency of physical activity offered, eligibility of children with disabilities to participate in all programs or facilities within the center, physical accessibility, and the provision of staff assistants and modified equipment by program type are provided in Table 2. All nine programs that said that they could not provide an exercise frequency of 2–3 times per week were programs specifically for persons with disabilities. These programs were typically offered on a weekly basis. Few programs or facilities (n = 6 of 61;9.8%) required their staff to have training specific to supporting individuals with disabilities. Programs for individuals with disabilities were more likely to offer an assistant compared with public inclusive programs (chi square, p =.014), but they did not differ in the availability of modified equipment (chi square, p =.064). Programs for individuals with disabilities were more likely to measure outcomes (n = 18 of 19 programs; 94.7%) than all of the other programs that were considered “inclusive” (n = 13 of 27 programs; 48.1%; chi square, p =.001).1 Many programs (28 of 46 programs; 60.9%) used client satisfaction as their outcome measure. In summary, there were significant access barriers to community fitness programs, including lack of physical accessibility, low program frequency, and lack of staff training in how to support individuals with disabilities. Parent Interviews We identified the following three themes from the family focus groups and interviews that reflected families’ common experiences with fitness programs and why they used them: (a) The importance of socialization, fun, and “being active,” (b) finding the right fit, and (c) barriers to participation. The first theme is related to the outcomes related to physical activity that were important to families. The remaining two themes provided insight into how community fitness programs were accommodating children and youth with motor disabilities. The Importance of Socialization, Fun and “Being Active” For many of the families, the development of friendships through increased opportunities for socialization with peers was an important outcome of community-based physical activity programs. Socialization was particularly important when their children did not have many opportunities to develop friendships in other settings. Inclusion was a priority for parents of children with more severe disabilities who experienced greater segregation from typically developing peers as their children got older. All families acknowledged the importance of fun and enjoyment of the activity to ensure that their child maintains interest in the activity, particularly during the teenage years when interest in physical activity programs would often decrease: Stretching is good, and she’s aware of that but if that’s the only focus of it, she loses it. It’s more like if we could create an environment where you do a little of this but, you’re laughing and joking and socializing. (Mother of a 16-year old with cerebral palsy, GMFCS level 1) 1 One representative of 15 programs did not answer the question about outcome evaluation therefore n = 46.

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Sports clubs (n = 2) Programs for individuals with disabilities (n = 19) Pubic community centers and facilities (n = 37) Private facilities (n = 3) Total 2 (100%) 7 (36.8%) 37 (100%) 3 (100%) 49 (80.3%)

Frequency of physical activity 2–3 times per week n (%)

TABLE 2. Summary of Results by Program Type

2 (100%) 17 (89.5) 37 (100%) 3 (100%) 59 (96.7%)

Children with motor disabilities eligible to participate in all programs/facilities 2 (100%) 18 (94.7%) 25 (67.6%) 1 (33.3%) 46 (75.4%)

Physical accessibility for wheelchair users

0 5 (26.3%) 1 (2.7%) 1 (33.3%) 7 (11.5%)

Individual assistant available

0 13 (68.4%) 17 (45.9%) 1 (3.3%) 31 (50.8%)

Modified equipment


0 4 (21.1%) 1 (2.7%) 1 (33.3%) 6 (9.8%)

Required staff training to support individuals with disabilities



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Some families discussed the importance of physical and physiological outcomes such as weight management, avoiding surgery, maintaining joint range of motion, maintaining muscle strength, and cardiovascular fitness. However, most parents did not; rather they discussed the importance of their child “being active.” They were interested in their children being involved in enjoyable physical activity but did not emphasize the need for intense exercise. Outcomes related to fitness levels were deemed more important by parents whose children had other opportunities to interact with children at school or elsewhere in their communities. This finding suggests that while the parents identified socialization as important, their focus may change toward the physical benefits of exercise if they feel that their child already has their social needs met. Finding the Right Fit Several factors influenced parental preferences for program format, including the ability of their child to participate, opportunities for social interaction and inclusion, and the age of their children. Parents used a trial and error approach to find programs or activities with a variety of program formats that worked for their children, with varying degrees of success. Sometimes families preferred programs for children and youth with disabilities and in other circumstances, an inclusive program provided a better fit. A mother of a 12-year-old girl with a diagnosis of myelomeningocele (classified as GMFCS level 1) explained her experience with finding an appropriate program for her daughter: It’s hit and miss. One group she hit was a really good match. There were enough of all different levels and she found enough kids to fit in with. [In another program] intellectually she understood all the games and all the things to do, but she couldn’t run to keep up. Well, they didn’t understand the rules, but they would like take off. So she was just like, “this isn’t working mom.” They are running all over and throwing things, and I’m almost getting hit, but I can’t move fast enough to duck. It wasn’t a good match, and that was just a hit and miss. Sometimes programs specifically for children with disabilities were preferred because children valued the opportunity to meet other children with similar disabilities. Parents of children with mild physical disabilities described how inclusive programs generally became more challenging for their children as they got older. Their children felt left behind and did not enjoy the activities. The same mother discussed how a combination of inclusive and specialized programs worked for her daughter: My daughter would never take a regular ski program, never; she just wouldn’t fit into it. We knew [skiing] was coming up in school so we made sure she was in disabled skiing a couple years before it started in school. It took her a couple of years to really ski. Her first year she didn’t really, she never even went on the chair, barely got her on the tow for like a whole season. But that’s how long it takes to get her to do something. So in a regular ski program would not work at all. But a regular swim program, we’re adapting it for her, and it’s working. Each thing is a little bit different. I would never put her in a regular dance program, but you know [an adapted dance program] worked good for her.

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Alternatively, parents of children with more severe disabilities discussed how inclusive programs became more important to them as their children got older because of the importance they placed on inclusion with peers without disabilities. They considered physical activity programs as a means of social inclusion for their children, particularly as they experienced more segregation from peers without disabilities: The social aspect would be great, and we have the same problem; the gap just gets bigger and bigger, and bigger. Elementary you have friends you go to birthday parties, [the child] is still able to be transferred and sit on the floor at somebody’s birthday party. In a wheelchair, it’s not accessible in a lot of people’s houses. So you know, again junior high the gap just got huge, and we have no more friends. (Mother of a 16-year-old boy with cerebral palsy, GMFCS level 4) Group exercise was often preferred because of opportunities for socialization, regardless of whether the programs were inclusive or specifically for children and youth with disabilities. Preferred frequency of the program varied but some parents indicated that they preferred a weekly program because of the busyness of their daily lives. Barriers to Participation Parents described many barriers to participation in community-based physical activity programs that made access challenging or prevented their participation entirely. Environmental barriers were a significant issue for families with children with more severe physical disabilities, particularly with older children who required more assistance with lifts, transfers, and personal care. The absence of appropriate pool lifts precluded access to the community pool for some families. Even if pool lifts were available, often a lone parent required another individual to assist with transferring their child in and out of the lift. In addition, lack of family change rooms was challenging, especially when the child was of the opposite sex of the accompanying parent. Parents also described lack of supplemental staff support at community-based physical activity programs. Staff was often not available to assist the children, and when they were, they often did not have the skills, knowledge, or positive attitude needed to successfully adapt the physical activity programs for their children. Lack of awareness about disability and diversity was discussed as barriers: We’ve actually been chased out of swimming pools and different things, because she can’t do what they demand she do in the water. It’s a speed thing – just to be in the pool you have to swim a lap. Her lap is different than everybody else’s. (Father of 13-year-old girl with cerebral palsy, GMFCS level 2) Parents described how they attempted to create more independence from their child in adolescence, yet the physical barriers in recreational facilities accompanied by the lack of staff support made it challenging to ensure their child’s participation without the presence of at least one parent. Parents described how their children lost interest in physical activity programs during adolescence and it was even more


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important during these years to ensure that physical activities were fun and engaging. Parents experienced challenges with finding information on available programs for their children. Families described the time-consuming task of researching programs themselves and the value of “word of mouth” information from other families: As a family with a child with special needs, you are doing the heavy lifting all the time. You’re initiating the conversations, or your [are] keeping your ears open for the conversation. That just becomes [a] part of the skill set you develop as a parent of a child with special needs. (Mother of 15-year old with cerebral palsy, GMFCS level 2) In summary, there were several barriers to participation reported by parents that were primarily the results of environmental and attitudinal barriers in community facilities, lack of staff support, and challenges with finding information about community programs and services. DISCUSSION The results of both the environmental scan of facilities and the interviews with parents suggest that families experience several challenges to accessing fitness programs and facilities in their communities. Even among the programs and facilities that indicated that children and youth with disabilities were attending their facilities, a surprising number were not physically accessible and a large proportion of sports clubs did not allow children with motor disabilities to join. While the involvement of children with disabilities in physical activity, including competitive sports, is widely advocated (Murphy & Carbone, 2008), this research suggests that children with disabilities may experience significant barriers accessing community fitness programs. Research conducted in the United States (Rimmer et al., 2004a, 2004b) also demonstrated that individuals with disabilities experienced increased access barriers to community fitness programs. Many of the programs and facilities initially contacted by telephone were excluded from the sample because they did not have children or youth with disabilities currently attending, even though the majority of them indicated that they would be willing to accept them. Families described several access issues that may contribute to disconnect between facilities’ willingness to have children and youth with disabilities and the actual uptake by families. Lack of trained support personnel and environmental barriers have been reported elsewhere in the literature (Rimmer et al., 2005, 2004b) and our data suggest that only a minority of facilities provide either a sufficient number of staff or adequately trained personnel. While individuals with disabilities are protected against discrimination by the Canadian Charter of Human Rights and Freedoms (Canada, 1982), there is no specific legislation in Canada that mandates accessibility to public buildings, including community fitness centers. Families want their children to experience age-appropriate independence and participation, and doing so is very challenging when they experience significant environmental barriers and are unable to rely on the assistance and support of trained staff within community facilities.


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Another significant challenge reported by parents was obtaining information about programs and facilities in their communities. We experienced similar challenges with obtaining information as we attempted to contact facilities and programs to participate in the study. Sixty-five programs including nine programs for individuals with disabilities did not return our calls. In addition, there was one phone line providing information for a number of city facilities and it was challenging to find an individual who was knowledgeable about the supports for individuals with disabilities within individual facilities. Difficulty with finding information about community fitness programs has been reported elsewhere in the literature (French & Hainsworth, 2001). The importance of ensuring that families have access to information about the programs and services that are available in their communities is highlighted by research that identifies challenges with finding and navigating services as a time-consuming task that contributes to family stress and burden (Green, 2007; Ray, 2002). The families in this study did not emphasize the importance of having access to program of sufficient intensity and frequency to change physiological outcomes for their children. In fact, most parents considered weekly access to a physical activity program to be sufficient. All parents emphasized the importance of “being active,” having fun, and most identified socialization as a crucial if not the most important quality of a potential program. Other research suggests that socialization and psychosocial outcomes associated with physical activity programs are important to ¨ et al., individuals with disabilities (Allen et al., 2004; Gaskin et al., 2009; Sandstrom 2009). Are meaningful participation in community fitness programs and associated social benefits important outcomes regardless of changes in cardiovascular fitness and muscle strength? Are we at risk of medicalizing community-based fitness programs? These are the important questions because exercise programs designed to improve aerobic capacity and muscle strength will likely be designed differently than programs focused on “being active” and social interaction as described by the parents in our focus groups and interviews. Clinically it may be assumed that enhancing musculoskeletal and cardiorespiratory outcomes will improve participants’ functional abilities and lead to increased social participation and acceptance, however community fitness programs may provide direct benefits of socialization (George et al., 2011) and community inclusion (Snowdon, 2012). In addition, increased socialization and development of relationships with peers are important research outcomes that need to be considered (Taub & Greer, 2000). We need to be sure that family objectives regarding psychosocial outcomes are addressed if we continue to emphasize fitness programs with sufficient intensity and frequency to change musculoskeletal and cardiorespiratory health. Clearly, additional research is needed to examine relationships between improved impairment level outcomes, functional abilities, and participation associated with physical activity programs as well as the impacts of different styles of activity programming (e.g., recreational, sport, fitness-focused) on musculoskeletal, cardiovascular, and psychosocial outcomes. An alternative approach to improving health outcomes related to physical activity is the concept of decreasing sedentary behavior rather than increasing physical activity (Chinapaw et al., 2011). This concept may fit better with some parents



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expectations and with the physical abilities of youth and adolescents with motor disabilities than the current emphasis on intense exercise programs. Decreasing sedentary behavior with frequent bouts of low levels of activity may contribute significantly to the long-term health status of adults and children. The concept of decreasing sedentary behaviors has not yet been applied to children with motor disabilities but offers a new treatment approach for consideration. The results of this study remind us that one type of program does not fit the needs of all families. Clearly, families need choices so that they can determine the type of programs that represent the “best fit” for their child. The majority of community programs that participated in our telephone interviews were committed to providing accessible and equitable services to persons with motor disabilities. However, it appears that access to information and physical accessibility continue to be challenging. Family expectations center around social inclusion and participation, and therefore future research needs to include the evaluation of psychosocial outcomes. Continued evaluation of the effects of intense fitness programs targeting musculoskeletal and cardiorespiratory outcomes is critical, and determining whether physical activity affects functional abilities will inform physical therapy practice. In addition, increased emphasis on implementation and evaluation of community-based programs is needed. LIMITATIONS The environmental scan was based on facility representative reports; an observational study using a standardized instrument for assessing accessibility would provide more objective and detailed description of accessibility. It is possible that including a more homogeneous sample would have altered family perspectives on the outcomes they perceive to be important. The perspectives of the parents who participate in the qualitative interviews may not be representative of all families with children with motor disabilities, particularly because the sample primarily included parents of adolescents with cerebral palsy. ACKNOWLEDGMENTS This research was funded by the Alberta Centre for Child, Family and Community Research. The authors would like to acknowledge the contributions of the parents and facility representatives who gave of their time to participate in the study. Declaration of Interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. ABOUT THE AUTHORS Lesley Wiart, PhD, is clinical researcher, Department of Clinical Support, Glenrose Rehabilitation Hospital, Edmonton, Alberta; she is also clinical assistant professor, Department of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada. Johanna Darrah, PhD, is Professor

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Emerita, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada. Michelle Kelly, MSc PT, is a private practice physical therapist, Calgary, Alberta, Canada. David Legg, PhD, is Professor (from Instructor), Mount Royal University, Calgary, Alberta, Canada.


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