Occupational therapy assessments of child participation in everyday activities

This paper originally included a detailed case study of a child and described use of the Children's Assessment of Participation and Enjoyment and the Preferences for Activities of Children. Because of child confidentiality I cut out the case study for purposes of blog publication. If there is any interest in hearing the 'rest of the story' I will have to get parental permission - and then I will re-post the whole paper. Let me know -


Introduction

According to a recent study, 6.5% of all children in the United States experience some degree of disability or long-term reduction in ability to participate in social role activities (Newacheck & Halfon, 1998). Simeonsson et.al (2003) describes the functionality of the International Classification of Functioning, Disability, and Health (WHO, 2001) model in describing the varied nature of childhood disability. However, they also identify potential problems of the ICF with assessing concepts of function within a developmental context. The new ICF represents an important step forward in understanding the relationship between disability, function, and health for children but it is not a complete model.

There is a need for standards that measure outcomes of occupational therapy intervention. Occupation-based and client-centered types of studies are important for creating an evidence-base for our clinical practice (Foto, 1996). “The outcome of therapy, then, transcends the attainment of a certain level of independence in personal and household activities of daily living. Outcome is measured by the quality of life that a patient is able to live as a result of having achieved a certain level of independence” (Foto, 1996).

The Children’s Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC) are assessment tools designed to document the everyday participation and preferences of children for activities outside of school performance (King, et.al, 2004). Since the publication of the ICF there is increased interest among researchers in describing the functional condition of people who have disabilities. Where previous systems published by World Health Organization were designed to document diseases and conditions, the ICF is designed to document function. The CAPE and PAC were developed in context of this renewed interest in function, and they specifically document the functional performance of children in daily activities outside of school.

Review of the Literature

Play, social, and recreational participation are major domains of concern within occupational therapy. The concept of purposeful engagement within these domains is at the absolute core of occupational therapy practice and is reflected in the earliest writings about the profession’s philosophy (Meyer, 1922). Florey (1996, p. 425) states that “occupational therapy must value what it does.” “Do(ing) the ordinary things with conviction of their value” (p. 425) should be carried out in celebration of our rich heritage that was provided by Meyer and the early founders of the occupational therapy profession. In doing so, occupational therapy may achieve its magnificent purpose as described by Reilly (1985, p. 104).

Reilly believed that studying playful interactions was critical for human development, and that play had to have its own “explanatory framework” and “theoretical identity” (Reilly, p. 115, 1974). Brazelton and Greenspan argue that children require developmentally appropriate everyday experiences in order to sustain development over time (p. 115, 2000). Wilcock proposed that humans have an occupational nature, and that through occupation the species is able to promote its own health and survival (1998, pp. 36-37). All of these authors build on concepts expressed by the original occupational therapy theorists. They provide a compelling argument that consideration of normal everyday experiences merits serious study and should serve as a focus of assessment and intervention.

The relationship between childhood disabilities and impaired patterns of participation has been extensively studied and described in the occupational therapy literature. Segal (2000) describes divergent methods of temporal adaptation that are employed by mothers of children who have attention deficit disorder. The contextual reality of having a child with a disability sometimes dictated the temporal strategy used by the parent. Mothers enfolded and unfolded occupations dependent on the available socioeconomic capital available to them at any given time. Similarly, Mosey (2004) describes subtle but important differences in mothering patterns between children who have cystic fibrosis and children who have attention deficit disorder. The mothers of children who have attention deficit disorder spent an inordinate amount of time having to mediate the daily activities of their children and they had a difficult time making this mediation ‘routine’ because of the unpredictable nature of attention deficit disorder.

Poulsen and Ziviani (2004) state that children who have developmental coordination disorders are less physically active and have significantly different patterns of social and physical play than their well-coordinated peers. Okimoto, Bundy, and Hanzlik (2003) described how children with cerebral palsy and developmental delays were found to score significantly lower on a test of playfulness than typically developing peers.
Other researchers found that when children who have disabilities are paired with children who have typical play skills, the play skills of the child who has disabilities tends to improve (Tanta, Deitz, White, & Billingsley, 2005).

Missiuna and Pollock (1996) describe the powerful influence of contextual factors on the limitation of development of play skills. Caregiver values and habits, child factors, physical barriers, and social barriers may all have a negative impact on a child’s ability to develop exploratory and competency-driven play behavior. Therapist appreciation of these factors may lead to assessment and intervention strategies that can mediate the negative effects of these contextual factors. Reed, Dunbar, and Bundy (2000) described the contextual factors that could influence the development of playfulness in children who have autism and their typically developing peers in different preschool settings. Desha, Ziviani, & Rodger (2003) reported that the inclusion of preferred play objects in a clinical environment increased intrinsic motivation to play for children who have autistic spectrum disorders, and thereby could enhance assessment and intervention.

Killegrew (2000) identifies that a child’s skills or abilities may not necessarily dictate the development of everyday routines within a family. Rather, broader ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate routines.

Occupational therapy assessments of participation

Many informal or observation-based assessments are used by occupational therapists to assess the participation skills of children. The Play History (Takata, 1974) was designed as a method to obtain information about a child’s historical and current play participation. The Play Scale and the Preschool Play Scale (Knox, 1974; Knox, 1997) provides a perspective on a child’s play skill development. The Transdisciplinary Play-based Assessment (Lindner, 1993) is an informal scale that allows for observation of cognition, social-emotional, communication and language, and sensorimotor skills. Bundy’s Test of Playfulness (1997) is another informal and observational framework for assessing elements of playful participation of children.

Haley, et.al (1994) developed the Pediatric Evaluation of Disability Inventory (PEDI), which is a functional assessment that is typically used in pediatric rehabilitation. The PEDI measures both capability and performance of self-care, mobility, and social functioning. The WeeFIM (Msall, et.al, 1994) is a similar assessment that measures the amount of assistance a child needs to perform daily tasks.

Coster (1997) reiterates the importance of a ‘top-down’ methodology for assessment and intervention but identifies that there are too few standardized assessments that incorporate this model. The School Function Assessment is offered as an assessment tool that measures contextually-relevant occupational performance of elementary school aged children. She suggests that the traditional assessment tools used by pediatric occupational therapists are focused on individual performance components and therefore do not measure contextually relevant and meaningful skills; rather, the application of these skills to actual occupation must be inferred.

The CAPE and PAC are new instruments that have not been studied extensively. The CAPE provides data on overall participation in activities. The CAPE also provides a specific breakdown of participation in formal and informal activities and participation in recreational, physical, social, skill-based, and self-improvement activities. CAPE scores provide information about the diversity and intensity of participation, who else participated in the activity, where the activities take place, as well as children’s reported level of enjoyment of the activities. The PAC provides data on children’s relative preference for participating in various activities.

After a comprehensive literature review only one study was located that focused specifically on the use of this assessment. Law, et.al (2004) administered the CAPE to 427 children who had some degree of physical disability. They found that diagnosis was not an influential factor, but that gender, age, and level of functioning were explanatory factors for levels of participation as measured by the CAPE. This study underscores the importance of measuring participation and functional capability, and also underscores the limited utility of diagnostic information in understanding children’s participation in non-school activities.

Occupational therapists have studied and documented the relationships between disability and function in children. There is a general concensus in the profession that functional participation in everyday activities is within the domain of concern of occupational therapy. Despite this concensus, the profession’s assessment tools have been based on medical and disability models. Newer models like the ICF that focus on function and participation have influenced development of occupational therapy assessment tools. The CAPE/PAC represents a new model in occupational therapy assessment. Occupational therapists should continue to refine and develop participation-based assessments that will more completely describe patient function.

References:

Brazelton, T.B. & Greenspan, S.I. (2000). The irreducible needs of children: What every child must have to grow, learn, and flourish. Cambridge: Perseus Publishing.

Bundy, A.C. (1997). Play and playfulness: What to look for. In L.D. Parham & L.S. Fazio (Eds.), Play in Occupational Therapy for Children (pp. 52-66). St. Louis: Mosby.

Coster, W. (1997). Occupation-Centered Assessment of Children. American Journal of Occupational Therapy, 52, 337-344.

Cronin, A.F. (2004) Mothering a child with hidden impairments. American Journal of Occupational Therapy. 58 (1): 83-92.

Desha, L., Ziviani, J., & Rodger, S. (2003) Play preferences and behaviour of preschool children with autistic spectrum disorder in a clinical environment. Physical and Occupational Therapy in Pediatrics, 23, 21-42

Florey, L. (1996). Valuing the Ordinary in Zemke, R. & Clark, F. (Eds.). Occupational Science: The Evolving Discipline. (pp 425-429), Philadelphia: F.A. Davis.

Foto, M. (1996). Outcome Studies: The What, Why, How, and When. American Journal of Occupational Therapy, 50, 87-88.

Haley, S., Coster, W. J., Ludlow, I. H., Haltiwanger, J. T., & Andrellas, P. (1992). Pediatric evaluation of disability inventory. Boston: PEDI Research Group, Department of Rehabilitation Medicine, New England Medical Center Hospital.

Killegrew, D.H. (2000). Constructing daily routines: A qualitative examination of mothers with young children with disabilities. American Journal of Occupational Therapy, 54, 252-259.

King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., Rosenbaum, P., & Young, N. (2004). Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc.

King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M., & Young, N. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical & Occupational therapy in Pediatrics, 23(1), 63-90.

Knox, S. (1974). A play scale. In Reilly, M. (Ed). Play as Exploratory Learning (pp. 247-266). Beverly Hills, CA: Sage Publications.

Knox, S. (1997). Development and current use of the Knox Preschool Play Scale. In L. D. Parham & L. S. Fazio (Eds.). Play in occupational therapy for children (pp. 35-51). St. Louis: C.V. Mosby.

Law, M., Finkelman, S., Hurley, P., Rosenbaum, P., King, S., King, G., & Hanna, S. (2004). Participation of children with physical disabilities: Relationships with diagnosis, physical function, and demographic variables. Scandinavian Journal of Occupational Therapy, 11(4), 156-162.

Linder, T. W. (1993). Transdisciplinary Play-based Assessment: A functional approach to working with young children. Baltimore, MD: Paul H. Brookes.

Missiuna, C. & Pollock, N. (1996). Play deprivation in children with physical disabilities: The role of the occupational therapist in preventing secondary disability. American Journal of Occupational Therapy, 45, 882-888.

Msall, M.E., DiGaudio, K., Rogers, B.T., LaForest, S, Catanzaro, N.L., Cambell, J., Wilczenski, F., and Duffy, L.C. (1994). Functional Independence Measure for Children (Wee-FIM). Conceptual basis and pilot use in children with developmental disabilities. Clinical Pediatrics, 33, 421–430.

Newacheck, P. & Halfon, N. (1998). Prevalence and impact of disabling chronic conditions in childhood. American Journal of Public Health, 88(4), 610-7.

Okimoto, A., Bundy, A. & Hanzlik, J. (2003). Playfulness in children with and without disability. In C. Royeen (Ed.), A compendium of leading scholarship: Pediatric issues in occupational therapy (pp. 254-267). Bethesda , MD : AOTA Press.

Poulsen, A. A. and Ziviani, J. M. (2004). Can I play too? Physical activity engagement patterns of children with developmental coordination disorders. Canadian Journal of Occupational Therapy, 71(2), 100-107.

Reed, C.N., Dunbar, S.B., & Bundy, A.C. (2000). The effects of an inclusive preschool experience on the playfulness of children with and without autism. Physical and Occupational Therapy in Pediatrics, 19, 73-89.

Reilly, M. (1974). Play as exploratory learning: Studies of curiosity behavior. Beverly Hills: Sage Publications.

Reilly, M. (1985). The 1961 Eleanor Clarke Slagle Lecture: Occupational Therapy Can Be One of the Great Ideas of 20th Century Medicine in AOTA (Ed.), A Professional Legacy: The Eleanor Clarke Slagle Lectures in Occupational Therapy, 1955-1984, (pp. 87-105). Rockville: AOTA.

Segal, R. (2000). Adaptive Strategies of Mothers with Children with Attention Deficit Disorder: Enfolding and Unfolding Occupations. American Journal of Occupational Therapy, 54, 300-306.

Simeonsson, R., Leonardi, M., Lollar, D., Bjorck-Akesson, E., Hollenweger, J., & Martinuzzi, A. (2003). Applying the international classification of functioning, disability and health (ICF) to measure childhood disability. Disability and Rehabilitation, 25, 602-610

Takata, N. (1974). Play as a prescription. In Reilly, M. (Ed). Play as Exploratory Learning (pp. 247-266). Beverly Hills, CA: Sage Publications

Tanta, K., Deitz, J., White, O., & Billingsley, F. (2005). The effect of peer-play level on initiations and responses of preschool children with delayed play skills. American Journal of Occupational Therapy, 59, 437-45.

Wilcock, A.A. (1998). An occupational perspective of health. Thorofare: Slack, Inc.

World Health Organization (2001). International classification of functioning, disability and health (ICF). Geneva, Switzerland: Author.