Pediatric Physical Therapy:
The Pediatric Physical Therapist's Role in Promoting and Measuring Participation in Children With Disabilities
Carey, Helen PT, MHS, PCS; Long, Toby PT, PhD, FAPTA
The Nisonger Center, UCEDD, The Ohio State University (Ms Carey), Columbus, Ohio; and Center for Child and Human Development, Georgetown University (Dr Long), Washington, District of Columbia
Correspondence: Helen Carey, PT, MHS, PCS, The Nisonger Center, UCEDD, The Ohio State University, 1581 Dodd Drive, Columbus, OH, 43210 (Helen.Carey@osumc.edu).
This paper was done in partial fulfillment of Helen Carey's DHS degree at The University of Indianapolis.
The authors declare no conflict of interest.
Purpose: The purposes of this article were to discuss participation relative to the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY) model, evaluate 3 current pediatric participation measures that
have been designed to assess participation, and review research findings relevant to participation in children and adolescents with disabilities.
Key Points: The concept of participation has been challenging to define and measure. Successful participation of children and adolescents with disabilities in daily life activities is influenced by individual, family, and environmental factors. Currently available tools designed to measure participation of children and adolescents have strengths and limitations, which should be considered when selecting tools for use in clinical practice.
Conclusion: Pediatric physical therapists can increase participation of children and adolescents with disabilities by measuring and promoting meaningful outcomes in the individual, family, and environmental components of the ICF-CY.
The International Classification of Functioning, Disability, and Health (ICF)1 serves as a framework for describing health and disability at both the individual and population levels. The ICF emphasizes health and function instead of disease and disability and views an individual's functioning as an interactive process among a person's body, his or her personal environment, and society. Disability is a state in which impairments create activity limitations and participation restrictions.1 The components of the ICF include Body Functions & Structure, Activity, and Participation. Environmental and personal factors are considered contextual factors in the ICF model because they influence a person's functioning and can affect activity and participation. These contextual factors may include social attitudes, climate, architectural structures, coping styles, age, gender, education, and behaviors unique to the individual. A person's environment, where he or she lives and functions, is acknowledged as integral to the manifestation of his or her disability because it may determine barriers and/or facilitators for participation. Body functions and structure refer to physiological or anatomic parts of the body. Impairments are described as problems with a physiological function or structure characteristic of many disabilities (ie, spasticity). Activity is the execution of a task such as standing or walking whereas participation is involvement in a life situation such as playing kick ball with peers. Activity limitations are difficulties carrying out a task such as not being able to move across a room whereas participation restrictions are difficulties experienced in life situations such as an inability to play at the playground with peers.1 Physical therapists have an important role in creating meaningful changes in all 3 components of the ICF through direct treatment, development of community-based programs, and involvement in policy and practices to reduce environmental and social barriers to participation.
The International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY)2 addresses the unique needs of children who because of growth and developmental changes experience different manifestations of disability than do adults. The ICF-CY added content related to the effect of (a) parents/caregivers, (b) the role of development and expectations for functioning, learning, and behavior, and (c) various environments including home and school.3 The content of the ICF-CY has been found to adequately capture and describe child functioning while providing a framework for goal setting and outcome measurement.4,5 Table 1 presents the dimensions of the ICF-CY.2
Participation is defined as involvement in life situations and represents the societal perspective of functioning within the ICF model of disability and is a key outcome for children with disabilities.1 Successful participation will vary for each child and the child's family on the basis of the influence of individual, family, and environmental factors.6,7 Pediatric physical therapists have a critical role in measuring and promoting more meaningful participation for children with disabilities. Effective use of outcome measures, treatment interventions to promote independence, patient and family education, and development of environmental supports can be key components in increasing a child's participation in daily life. The purposes of this article were to discuss participation relative to the ICF-CY model, evaluate 3 pediatric measures that have been designed to assess participation, and review research findings relevant to participation in children and adolescents with disabilities.
CHALLENGES IN DEFINING AND MEASURING PARTICIPATION
The ICF1 combines the components of activity and participation into 9 domains, or what are referred to as chapters, which allows for flexibility in defining and applying these components, but creates difficulty in conceptualizing and measuring participation.7,8 This combination also creates difficulties in measuring specific activity or participation outcomes. Because participation is multidimensional, mitigation of an activity limitation does not necessarily mean that participation restrictions will subsequently be reduced due to the influence of environmental and societal barriers to participation. For example, a child may learn to walk independently with an assistive device; however, this improved mobility does not necessarily guarantee successful participation in play activities at a peer's home where stairs may present a physical barrier and communication impairments may affect social interaction. A clear definition of participation is necessary to develop tools that assist with identifying participation priorities of individuals, measuring change in participation over time across various settings, and assessing outcomes of interventions to reduce participation restrictions.
A variety of definitions of participation have been offered (Table 2). These definitions describe common themes for further defining participation including performance of activities with other people, inclusion in social roles, attention to priorities and fulfillment of personal goals, contribution to quality of life, and relevance to meaningful outcomes for the child and his or her family. Participation in life situations is more complex than the performance of single activities, for example, playing an organized game at recess is more complex than walking across the playground. More descriptive definitions will allow physical therapists to distinguish between activity and participation goals and select measurement tools for each of these components.
Current participation tools measure a variety of factors such as the extent to which normative expectations are met within a specific role (ie, student), the frequency or quantity of participation, the extent to which an individual is self-directed in his or her participation, or whether participation occurs in a standard environment of capacity rather than the usual environment of performance. Although normative data exist for the performance of activities such as walking and self-care, data do not exist to compare the participation of children and adolescents with disabilities to peers of the same gender, age, and social class.8 Such data would help to determine typical levels of participation on the basis of age, sex, and social class but would likely not reflect individual preferences and goals for participation. No agreement has been obtained regarding which domains of the ICF-CY should be included in measurement tools.8 McConachie et al12 recommend that measurement of participation be performed in addition to the measurement of activity limitations that may influence participation restriction. As pediatric physical therapists further evaluate participation measures in clinical practice, they will have a better understanding of how to define participation in terms of the ICF and measure meaningful outcomes.
REVIEW OF SELECTED PEDIATRIC PARTICIPATION MEASURES
Many of the tests and measures pediatric physical therapists use focus on impairments and activities such as joint range of motion and gross motor skills, respectively. These tools have a limited capacity to determine whether increased independence in functional skills/activities allows a child to participate more fully in meaningful daily situations. Appropriate, valid, and reliable tools are necessary to measure functional and meaningful outcomes within the ICF framework, including participation. A literature search for tools designed to measure participation was conducted in MEDLINE, CINAHL, and PsycINFO from 2001 to 2011 in an attempt to capture tools more recently developed or reviewed. Measurement tools were considered if they specifically stated that their purpose was to measure participation in children. The following tools were found in the literature: the Children's Assessment of Participation and Enjoyment (CAPE) with companion measure Preferences for Activities of Children,13 the School Function Assessment (SFA),14 the Miller Function & Participation Scales (M-FUN),15 the Assessment of Life Habits,16 Children Helping Out: Responsibilities, Expectations, and Supports,16 the Canadian Occupational Performance Measure,17 and Goal Attainment Scaling.18 Tools measuring only activity such as walking and gross and fine motor skills were not considered participation outcome measures. The Assessment of Life Habits and Children Helping Out: Responsibilities, Expectations, and Supports were not commercially available for full review. The Canadian Occupational Performance Measure and Goal Attainment Scaling provide a framework for developing specific child or family goals; however, they are not specific to participation. Therefore, the CAPE with companion measure Preferences for Activities of Children,13 the SFA,14 and the M-FUN15 were selected for review because the authors specifically stated that the tools were designed to measure participation in children with disabilities and they are commercially available to therapists. A detailed review of these measures indicated that they have both strengths and limitations that affect their clinical utility.
The Children's Assessment of Participation and Enjoyment With Companion Measure Preferences for Activities of Children
The CAPE13 is designed to measure participation in everyday activities at home or in the community for children and youth between 6 and 21 years of age. The CAPE is a self-administered or interview-assisted questionnaire with 55 items that is designed to measure the dimensions of diversity, intensity, with whom, where, and enjoyment. Scores are calculated for overall participation, formal and informal activities, and 5 different types of activities (recreational, active physical, social, skill-based, and self-improvement). The Preferences for Activities of Children reflects an individual's preferences for involvement in specified activities. Translation of the CAPE scores into a meaningful assessment of an individual's participation requires a great deal of interpretation on the administrator's part to determine score trends and recognize possible personal, family, and environmental barriers limiting participation. For example, using the test findings to inform intervention planning requires the test administrator to determine whether the diversity and intensity scores correlate with the child's preferences and enjoyment and the child's and family's goals.
Internal, test-retest, and interrater reliability have been reported for the CAPE as a part of test development.13 In addition, independent research reported content and construct validity.19 However, no data have been reported on the CAPE's responsiveness to measure change in participation. The CAPE is not designed for younger children and requires a minimal level of cognitive and communication abilities to respond to questions meaningfully; therefore, reliable measurement of participation would be challenging for children with more severe impairments and reduced levels of functional skills.
School Function Assessment
The SFA14 is designed to assess the performance of functional tasks that support participation of children with disabilities between kindergarten and sixth grade and also to guide collaborative program planning in educational environments. This test is a judgment-based criterion-referenced questionnaire that has 3 parts that measure participation, task supports, and activity performance. It is designed to be completed by at least 2 different professionals who interact with the child on a regular basis to determine typical performance. Participation is measured in the context of a child's ability to participate in opportunities and roles like peers in the classroom, on the playground, and during transportation, toileting, transitions, and mealtime. A rating scale defines in detail 6 different levels of participation from extremely limited to full (participation without assistance or adaptations).
Validity and reliability for all 3 parts of the SFA has been reported in the user's manual, including participation and responsiveness to change.14 Independent research has not explored the psychometric characteristics of the participation component of the SFA. Limitations of the SFA include the age range being restricted to younger children, excluding adolescents, and lengthy time for administration that requires collaboration of professionals. In addition, the SFA measures participation in different general educational settings or situations (playground, mealtime, classroom, etc) instead of measuring an aspect of participation (engaging in play or a group activity, socializing/forming friendships, etc).
The Miller Function & Participation Scales
The M-FUN is a developmental assessment tool for children aged 2 years 6 months through 7 years 11 months designed to determine how a child's motor competency affects engagement in home and school activities and overall social participation.15 The test has 2 major components, a norm-referenced Performance Assessment and a criterion-referenced Participation Assessment with 3 checklists for Home Observation, Classroom Observation, and Test Observation. The M-FUN Performance Assessment tasks were developed to identify the underlying neuromotor foundational abilities rather than developmental skill acquisition in the areas of fine motor, visual motor, and gross motor function. The checklists were developed to measure a child's participation at home and at school.
Miller reports in the M-FUN's Examiner's Manual evidence of reliability and validity for the Performance Assessment components (visual motor, fine motor, and gross motor skills) but not for the Participation Assessment (checklists).15 No independent research has been published on reliability and validity for this tool. The author reports that the Home Observations checklist, the Classroom Observations checklist, and the Test Observations checklist all measure a child's participation either at home or at school.15 The age range of the M-FUN limits assessment of children older than 7 years when participation can become more self-defined. Although these checklists provide a very comprehensive overview of a child's function in the home and school settings, careful examination is required to determine their capacity to measure participation as involvement in a life situation.
ANALYSIS OF MEASURES WITHIN THE ICF FRAMEWORK
Coster and Khetani7 discussed the challenges of defining and measuring participation using the ICF-CY due to the combining of the 9 chapters into one component referred to Activity and Participation (see Table 1). Although the ICF distinguishes between Activity and Participation as different components of human functioning in the disability model, further delineation is not made when identifying the chapters.1 Coster and Khetani7 propose that the first 4 chapters describe activity (Learning and Applying Knowledge, General Tasks and Demands, Communication, and Mobility) whereas the last 5 chapters describe participation (Self-care, Domestic Life, Interpersonal Interactions and Relationships, Major Life Areas, and Community, Social and Civic Life). Judgment must be used to determine when a task/activity becomes a life situation. The first 4 chapters can be perceived as more task based because performance of skills in these areas is less complex, does not necessarily involve other people, is not typically a series of activities, and is not typically a routine or role expectation. The last 5 chapters, however, are more complex, involve other people, are a part of routines or roles, and are more likely to be affected by participation restrictions. Using this strategy proposed by Coster and Khetani7 to divide the chapters, participation measures can be analyzed to assess their strengths and limitations in measuring participation (see Tables 3 and 4).
The ICF1 provides subchapters within each of the 9 Activity and Participation chapters, which were used to increase the accuracy of classification of the individual measurement tool items into either Activity or Participation domains. Measurement tools with more items in the first 4 chapters are more likely to measure Activity whereas tools with more items in the last 5 chapters are more likely to measure Participation. It would be inaccurate to assume an individual's participation is limited or has improved if the tool does not have sufficient test items within the Participation chapters. The CAPE demonstrates the greatest percentage of test items (96.4%) that measure participation as defined by the ICF. Less than half (42.9%) of the SFA test items and only a quarter (25.0%) of the M-FUN test items measure participation as defined by the ICF. Table 3 reports our categorization of test items within the activity and participation chapters of the ICF-CY. Although the CAPE had a high percentage of overall participation items, the items assessed participation primarily in the chapter of Community, Social, and Civic Life. The items in the SFA were spread over multiple chapters with participation items primarily in Self-Care and Major Life Activities. The M-FUN assessed participation items in the chapters of Self-Care, Domestic Life, Interpersonal Interactions and Relationships, and Major Life Areas. None of the tools measured participation in all chapters of the ICF. Mobility (walking and moving) and General Tasks and Demands (basic tasks in routines and coping emotionally) were activity chapters frequently measured by these tools.
If participation measures do not cover a broad scope of activities or if a child's preferences are not included in the tool, interpretation of outcomes based on these tools may not be an accurate or meaningful portrayal of a child's participation in expected or desired life situations. A combination of functional and participation tools might be more useful in determining changes in functional skills such as walking and manipulating objects with hands as well as changes in participation such as being able to independently negotiate the lunchtime routine at school. Future participation measures should consider development of items across all chapters of Participation within the ICF-CY to provide a more comprehensive profile of an individual's participation in life situations.
RELEVANT LITERATURE ON PARTICIPATION IN CHILDREN AND ADOLESCENTS WITH DISABILITIES
The understanding of the factors that affect participation in children with disabilities is equally important to using appropriate tools to measure participation outcomes. Interventions focused on participation restrictions will create a greater opportunity for measurable improvements in participation for children with disabilities. The ICF provides a framework for physical therapists to evaluate how our interventions influence more global aspects of a child's life, such as participation in daily activities in multiple settings, instead of isolated functional skills in a specific setting such as a treatment site. Research on participation in children and adolescents with disabilities has focused on 3 areas: the intensity (frequency) and diversity (variety) of participation; child, family, and environmental factors; and factors within the educational setting.
Intensity and Diversity of Participation
Children and adolescents with disabilities participate less in everyday activities than their peers without disabilities.20–22 Majnemer et al20 found that school-aged children with cerebral palsy participate in a variety of leisure activities, although the types of activities are less diverse (of a smaller variety) than peers without disabilities. However, Kang et al23 found that enjoyment during participation was an important outcome for these youth. These findings indicate that children with disabilities participate less frequently and in a smaller variety of activities than their peers, but may find enjoyment in activities related to their interests. When measuring participation outcomes, children and youth preferences should be important considerations. If a measurement tool does not include a wide variety of participation activities, it may not accurately reflect an individual's outcomes.
Severe motor dysfunction and reduced levels of functional abilities in children and adolescents with disabilities has been significantly correlated with decreased involvement in physical activities and restricted participation in daily tasks.20,22,24–42 Children and adolescents with greater limitations in motor function and mobility, as classified on the Manual Ability Classification System and the Gross Motor Function Classification System as having fewer functional abilities and limitations in independent mobility, are at the highest risk for restrictions in their participation in daily activities and report lower levels of participation. An individual's age, gender, intrinsic motivation, level of enjoyment, and preference for specific activities have all been found to affect participation in life situations. In addition, children with an intellectual disability, behavior or conduct problems, or deficits in adaptive or communication skills experienced lower levels of participation in leisure and daily activities.20,27,30,31,36,37 Factors that have been found to positively affect participation for both children and adolescents is enjoyment of activities and the ability to select activities based on preferences. Studies have shown that children's willingness to engage in activities and their motivation to continue participation will improve with their ability to determine preferences and experience enjoyment.20,25,32,34,37,38
Children with disabilities function within a family unit and rely on the supports provided by their caregivers and other family members. Participation may be reduced for children and adolescents with disabilities in families with lower household income, lower parent education levels, declining caregiver physical function, elevated parental stress, and perceived barriers to community activities. In addition, access to community-based activities may be reduced in families who experience difficulties with transporting their child with a disability.20,21,25,32,37,43 Children participate more in daily activities and express more enjoyment in these activities in families with greater cohesion or stability, greater family participation in social and recreational activities, positive caregiver values and perceptions regarding participation, and the ability of the child and family to identify priorities for daily activities and advocate for needs.25,36,24,38,43,44 The importance of family support in maximizing an individual's participation in daily activities cannot be underestimated. Professionals should consider factors beyond the child when addressing issues of participation.
A child's participation in daily activities is not only dependent on his or her unique individual and family characteristics but also on the facilitatory or restrictive factors of his or her environment. Environmental factors may be physical, social, and/or attitudinal in nature.1 For example, in children with physical disabilities, a significant correlation has been found between structural/physical barriers in the home or community and the ability to participate in home- and community-based activities. Although equipment and structural adaptations may facilitate mobility, the cost may be prohibitive for families to obtain equipment and adapt structures in the home and these adaptations may not be available in the community. Difficulties accessing and using public transportation may reduce participation in community-based activities if the family does not have private transportation options. Negative attitudes of other children, perceived attitudes of community members, poor social support from friends and the public, institutional and government policies, and a family's poor knowledge of disability legislation have all been reported as additional barriers to participation, whereas social services for financial and transportation assistance have been reported to improve participation.33,38,43,45–47
Factors Within the Educational Setting
The educational setting provides opportunities and challenges for children with disabilities to participate in learning, social, and physical activities. Children and adolescents with disabilities participate less in school activities than their peers without disabilities,48,49 although participation is increased in adolescents with disabilities in regular educational programs due to higher levels of social, mobility, and adaptive skills.23 Barriers to access to school activities identified in one study48 include lack of environmental modifications, the student's physical condition, and attitudes of activity sponsors. Similar to participation at home and in the community, individuals with greater physical or cognitive impairments, fewer adaptive skills, and more challenging behaviors participate less in the school environment.48,49 In addition, children with disabilities may experience difficulty with friendship development, social isolation, and bullying by peers, all of which have been shown to reduce participation in the educational setting.50,51
In summary, factors related to the child, the family, and the environment all influence participation in daily life situations for a child with a disability. Children participate more in daily activities and community activities when provided adequate family support and when societal and environmental barriers are diminished. Through assessment and reduction of participation barriers, pediatric physical therapists are in a position to improve a child's participation in life situations. Understanding the strengths and limitations of current participation measurement tools will allow therapists to more accurately gather information, plan interventions, and assess outcomes.
PERFORMANCE AND CAPACITY QUALIFIERS
Differences have been found in children with physical disabilities in their capacity or capability (what they can do) and their performance (what they actually do).39–41 The ICF1 describes capacity as the highest probable level of functioning whereas performance is what an individual does in the person's current environment. Many of the contextual factors found to contribute to the disparity between capability and performance are related to the child, family, and environmental factors that affect participation. Contextual demands may include the physical environment, inability to use mobility aides, time constraints, or social expectations.40 Although it may be possible to improve a child's performance by training motor capacity,42 increased performance does not necessarily correlate with increased participation. More consistent performance of a skill means a child's capacity potentially expands across various settings; however, this does not ensure that a child is able to participate in more complex daily life situations. When evaluating a child's participation, therapists should carefully consider aspects of capacity and performance and determine how they affect overall participation restrictions. For example, if a child has the ability to ambulate community distances using a mobility aide (capacity) but has a fear of falling in crowds of people (performance limitation) they might be limited in attending a peer's birthday party at the local arcade (participation restriction). A comprehensive, integrated physical therapy program can promote participation through activities that focus on reducing restrictions in capacity and/or performance.
The ICF-CY provides a useful framework for understanding disability from both the personal and societal perspectives. Although challenges to specifically defining participation have been discussed, an emerging understanding of meaningful concepts of participation will assist professionals in examining participation outcomes. It is also critical to understand that participation is multidimensional and affected by child, family, and environmental factors. Although current participation measures have some limitations, understanding these tools will assist with more appropriate clinical use. By identifying activity limitations and participation restrictions, pediatric physical therapists can more effectively design interventions to affect change in impairments, promote motor abilities, identify meaningful participation goals, advocate for reduction of participation restrictions or barriers, and measure participation outcomes. Therapists should start defining participation outcomes early in the rehabilitation process to help individuals and their families prioritize participation goals. Participation must start in childhood if we expect children with disabilities to grow up and successfully participate at home and in their communities as adults.
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