The physical, social, academic, and spiritual growth of children and adults with and without disabilities is positively influenced by active participation (2–5). Active participation is the level of participation that allows individuals to gain positive outcomes in multiple domains such as the physical, cognitive, and social (6) that contribute to personal growth and development (7). When initiated at a young age, active participation in physical activity can positively influence physical activity patterns into adolescence and adulthood (8, 9).

Increased physical activity over the life span can play a part in reducing potential health risks associated with physical inactivity later in life. Unfortunately, children with disabilities engage and participate less often than their peers without disabilities (10–12). This is particularly alarming considering the increased health risks for many children with disabilities (13, 14). Even with knowledge of health- and psychological-related benefits physical activity and active participation provide for this population (15, 16), participation patterns among children with disabilities are still largely underexplored (3, 17).

It was not until the acceptance of the International Classification of Functioning Disability and Health (ICF) model that participation was established as a construct in understanding disability (18, 19). The ICF’s model of disability suggests three levels of human function that are as follows: (1) body functions and structures, (2) activities, and (3) participation. Further, it states, an impairment at one or more of these three levels constitutes a disability (18). The nature and level of an individual’s disability can affect the level of participation that individual is capable and comfortable participating in (20).

Participation as defined by the World Health Organization (WHO) is “the nature and extent of a person’s involvement in life situations” (18). Although active participation has been linked to a healthy lifestyle, the acceptance of the ICF model identified the importance of participation within the broader context of disability (21). An individual’s involvement in these life situations may be effected differently based on the person’s disability and the needs associated with their disability (20). As a result, multiple aspects of participation should be considered when attempting to increase physical activity involvement, this may include the activity itself, other participants, where the activity is taking place, and how often participation occurs.

Down syndrome (DS) is the most common genetic cause of intellectual disability and occurs in approximately 1 in 700 live births (22). Individuals with DS are at an increased risk for obesity, osteoporosis, musculoskeletal disorders, and cardiovascular-related health problems (23). When children with DS were compared to their older siblings, they were found to be heavier and spent less time in vigorous physical activity (11, 24). Activity levels in children with DS have been found to decrease over time (25, 26), and the current participation patterns of children with DS remain under investigated (24, 27).

The lack of evidence-based research in this area warrants attention since community involvement and active lifestyles have been associated with positive health outcomes (23, 27, 28). In addition to physical health benefits, participation provides an opportunity for peer interaction in an environment that fosters social support, security, and self-esteem (29). The construct of participation, within the ICF model, aims to understand the whole person in a social context (23, 30, 31). Participation is influenced by personal, familial, and environmental factors, which all need to be considered during assessment and program planning (3).

Previous findings suggest that continuous participation is influenced by factors such as, participating with others, having fun, feeling successful, and independently completing activities (32, 33). Family values also influence the activities that children with disabilities have access to, which affects participation patterns (33). Though complex, understanding specific participation patterns for this population could have implications for educators and health professionals to help inform intervention and program needs for children with and without disabilities.

Evidence-based research about participation patterns in individuals with disabilities is limited (3, 34–36). Existing literature indicates that children with disabilities participate in informal activities, such as playground games more than formal activities, such as community-based sport programs (3). This is concerning given that formal activities have been associated with improved skills (motor skills, social skills, etc.), competencies, and social relationships (3). When the participation patterns of children with DS, autism spectrum disorders, and typical development were compared, children with typical development engaged in more social and recreational activities and more activities with friends (36). This participation disparity further exemplifies that children with DS have more limited opportunities to participate in activities that foster psychosocial health-related benefits (29).

By investigating the participation patterns of children with DS, intervention and community programs can be tailored to meet age-appropriate needs. School curricula and individual education plans (IEP’s) can be developed to support prerequisite skills needed to encourage participation in selected activities. Currently, the participation patterns of children with DS are unknown, thus the primary purpose of this study was to investigate the participation patterns of children with DS through the construct of participation as defined by the ICF.

Participation patterns of children with DS were collected through an interview-administered version of the Children’s Assessment of Participation and Enjoyment (CAPE) (1). The CAPE was administered to children with DS in a one-on-one interview, approximately 45 min in length. The CAPE was administered during the baseline data collection for an adapted physical activity intervention (37). Two interviewers (graduate students in Kinesiology) met with all of the participants in this study as well as their caregivers to collect data. Both administrators trained together on CAPE administration and procedures. In addition to training for the CAPE, both administrators had multiple years of experience administering a variety of interview-based assessments [Autism Diagnostic Observation Schedule (ADOS), Peabody Picture Vocabulary Test (PPVT), Wechsler Abbreviated Scale of Intelligence (WASI)] to individuals with DS, intellectual disabilities, and autism spectrum disorders.

A frequency analysis found the most common activities based on activity type; these results can be found in Table 2.

Children with DS participate in all activity types represented in the CAPE, which include recreational, physical, social, skill-based, and self-improvement activities. The participants in this study engaged the most often in recreational activities followed by social, self-improvement, physical, and skill-based activities (see Table 4). Understanding the participation patterns of children with DS allows for educational and community-based programs to be aimed at age-appropriate preferences with the intent of achieving balanced participation. Understanding what activities individuals with DS participate in along with where and whom they are participating with provides an initial step in exploring their motivations and impediments.

Recreational activities were participated in the most among children with DS (the most common activities for recreational activities and other activity types are listed in Table 2). Activities within this category included playing board games, watching TV, playing computer and video games, crafts, drawing, or coloring. The results of this study support previous work, which indicate that children with DS lead physically inactive lifestyles (24, 41). To that end, the least participation occurred in the active physical and skill-based activity types – it is noteworthy that these activity types consisted of many physical activities (see Table 2) (1).

Although this study was not aimed solely at understanding physical activity participation, there is a consistent trend in the data favoring physical inactivity for children with DS. Given the health-related concerns facing children with DS as they age, such as increased risk for obesity, osteoporosis, musculoskeletal disorders, and cardiovascular related health problems (23), it is important to embed active physical and/or skill-based activity types in educational and community-based programs. Educators and health professionals should work toward providing balanced activities that include the children’s activity preferences without neglecting other priorities, such as physical activity (42).

The CAPE measures participation on a social and geographic continuum through the dimensions of “with whom” and “where.” Lower scores in these dimensions are reflective of more solitary activity (with whom) with a closer proximity to the home (where), and higher scores reflect more engagement within the community on a social and geographic continuum (1). Based on the results within these dimensions, youth with DS extend their social and geographic network the most when they participate in the active physical and social activity types. In contrast, social and geographic networks extend the least when they participate in the recreational activity type. Based on the results of this study, each activity type has unique benefits focused on different aspects of participation. This information can guide programs and help educators and community programmers to create activities based on the various needs of the program and the needs of the children.

Similar to previous studies on the participation patterns of children with disabilities, we found that children with DS prefer activities with an informal structure. King et al. (34) found that as children with physical disabilities get older, participation in recreational activities declines, and participation in social activities increases. This result is not surprising given that meaningful participation is impacted by enjoyment, and children’s interests change as they get older (33). As children get older, often the availability of resources and supervision needs decrease, understanding this impact on participation needs is important (43).

A combination of preferences and activity priority should be taken into consideration for program development. Within this study, many recreational activities were participated in frequently, while enjoyable, these activities provide little physical activity. The health-related concerns of children with DS have direct relationships to physical inactivity making physical activity a priority (42). Educational and community-based programs may be better informed through balance (a variety of activity types), preference (activity types that children enjoy participating in), and priority (activity types that focus on priority based on appropriate assessment).

For example, a child who has a priority of forming friendships should be encouraged to participate in social activities. While a child with a priority of being more physically active should focus on physical and skill-based activities. Targeting educational and community-based programs to increase participation for individuals with DS may make a significant contribution to improving their health and well-being (43). Choosing activity types targeted at priorities and preferences can allow children to participate in a balance of activities, including activities with direct health-related benefits and activities with psychosocial-related benefits such as improved social support, security, and self-esteem (29).

Understanding these participation patterns helps researchers, clinicians, interventionists, and educators better prepare for program needs that help to enhance the overall community participation for children and youth with DS. Previous research suggests a behavior phenotype for individuals with DS to engage in specific activities (44). Understanding these activities along with the less popular activities could be beneficial for practitioners working with individuals with DS. Many of the participants in our study reported deficits in the areas of formal, physical, and skill-based activity participation. These deficits could indicate a need for increased school- and community-based programs in these areas.

There are several logical next steps to extend this research. Future research can seek to link motivation to activity participation. In addition to motivation, future researchers might seek to examine potential social and motor skills necessary for successful participation. For example, adults with DS often report difficulty in finding someone to be active with (45) in addition to previous research indicating delays achieving motor milestones (46).

Children with DS participate in all activity types represented in the CAPE. Based on the results of this study, different activity types support different priorities. Children with DS participated the most in recreational activities. Physical and social activities allowed the greatest geographic extension into the community. Social activities involved the greatest social extension into the community. Proportionately, children with DS participate more in informal compared to formal activities. Consistent with Menear (26), the findings of this study support the need for a variety of community-based programs for youth with DS. Understanding the activity preferences of individual with DS can potentially aid parents, educators, and allied health professional in identifying attractive, meaningful, and motivating activities.

All participants gave verbal and written assent, and a caregiver for each participant signed informed consent. All procedures were approved by the Institutional Review Board at the University of Michigan.

All the authors contributed to this manuscript. MM conceived the idea, methodology, data analysis, and interpreted results. JL contributed to the section of the manuscript focused on informal and formal activities. PE assisted in interpreting results. NC updated this manuscript with relevant literature. DU mentored MM throughout this process.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.