1. Introduction
Participation is defined as involvement in life situations and the ultimate outcome for individuals with disabilities [
1]. In occupational therapy practice framework (OTPF), third edition [
2], participation is defined according to the international classification of functioning, disability and health (ICF); it is described as involvement in life situations. The term participation includes different concepts, such as personal independence and social integration. The definition of participation should be considered throughout a person’s life. A child plays with his friends, plays sports, goes to school, and plays the role of a family member; an adult participates in family, work, leisure, and social activities; and an elderly may want to continue working, traveling, doing charity work, and spending time with his family. These activities demonstrate a person’s desire to fully participate in society and do what is meaningful and important to them [
2]. Recently, the word, participation, has gone beyond subjectivity as it is an important concept in the OTPF-III and ICF. According to OTPF-III, the main purpose of occupational therapy interventions is to improve and maintain welfare, participation, and the quality of life in clients. [
2]. Factors that influence participation in meaningful activities are participation dimensions that include the interests and priorities of the child, what they want to do, the perceptions of how enjoyable an activity is (enjoyment), where and with whom they want to do they activity, the level of independence in doing the activity (with whom, assistant level, or ability level), how satisfied the parents are (parent’s satisfaction), the amount, pattern, and variety of activities (diversity), and how often the activity is performed (intensity or frequency) [
2, 3, 4, 5, 6].
Children with cerebral palsy (CP) are one of the most susceptible groups whose participation in purposeful activities may be limited because of comorbid disorders. The main purpose of rehabilitation is to empower clients to participate in different life areas. To influence participation, assessing the outcomes in individuals with different health conditions is important [
3]. CP remains a common condition, with a prevalence of 2.11 per live birth [
1]. CP refers to a condition with various uncontrolled motor disorders caused by damage to the motor control centers of the brain that has occurred before birth, at birth, or after birth.
This study aims to determine the participation assessment scales specifically targeting the area of participation based on OTPF for individuals with CP in the age range of 4 to 18 years. By reviewing the identified scales, we can select the appropriate scales to evaluate the participation of individuals with CP and design and conduct clinical trial studies on the participation of children with CP. Selecting the appropriate assessment scales would be beneficial for clinicians and researchers who want to measure the participation of individuals with CP as well.
2. Materials and Methods
Search strategy
This systematic review study aims to determine the psychometric properties of a variety of participation assessment scales for 4 to 18-year-old individuals with CP. For data collection, the first and the second author of the present study separately searched the articles on databases by English keywords. To determine the levels of evidence of the articles, the AOTA levels of evidence were used by the researchers [
7]. The English electronic databases included CINAHL, Google Scholar, Cochrane, PubMed, OVID Medline, ProQuest, Web of Science, OT direct, OT search, and Pedro.
Following are the keywords which were used individually or with Boolean operators based on MeSH: “Participation,” “Occupational Performance,” “Assessment,” “Evaluation,” “Children,” “Cerebral Palsy,” “Occupation,” “Assessment,” “Scale,” “ICF,” “OTPF,” “School,” “ADL,” “Sleep/Rest,” “IADL,” “Leisure,” “Social Participation,” “Play,” “Work.”
Study selection (screening)
All extracted articles were evaluated by the two reviewers independently and separately based on predetermined inclusion and exclusion criteria. The inclusion and exclusion criteria are provided in
Table 1.
If there was a disagreement between the reviewers about an article, it was resolved through a 2-person discussion. If the reviewers did not reach an agreement on a particular article, a third reviewer intervened and his or her opinion was applied to the article. To analyze and report the results, the researchers used the descriptive data synthesis approach. accordingly, after selecting the articles and resolving any disagreements, the findings of each article were fully extracted. The extracted findings are reported descriptively and in tables.
3. Result
In this study, based on the definitions provided in OTPF regarding participation and social participation, we differentiated participation and social participation and included social participation as an area of participation [
6]. The included studies are shown in the PRISMA flow diagram in
Figure 1 [
8].
Among 1482 studies, 22 studies that assessed the participation of children with CP in meaningful activities were included in this review. The psychometric properties of 8 outcome measures for children with CP were available and 5 assessment scales had the potential to be used for children with CP; however, the psychometric properties of these scales in these children were unavailable. It should be noted that firstly, we included the studies which were about the participation assessment scales of children in meaningful activities, and then the outcome measures with available psychometric properties in children with CP were included in the study. The quality of the characteristics of the children’s participation outcome measures is presented in
Table 2.
The characteristics of the participation outcome measures in CP are presented in
Table 3.
Properties of measures
The COSMIN bias list was used to evaluate the characteristics of scales [
9]. This list can be employed to evaluate the methodological quality of a scale as well as to compare the psychometric properties of different scales in a special field. [
9]. In this study, the validity and reliability of the measures provided by Terwee et al. were assessed [
10]: positive “+” (there is a description or argument related to psychometric properties and is also acceptable), negative “-” (inappropriate or less than accepted standards), unspecified “?” (questionable measurement methods), or “0” (no reported information on psychometric properties). Findings of the validity and reliability of the measures are presented in
Table 3.
4. Discussion
Performing optimal rehabilitation services, especially occupational therapy, to clients requires accurate assessments and the use of efficient tools and scales during evaluation. The present study aimed to determine the participation assessment scales that specifically target the area of participation based on OTPF for individuals with CP in the age range of 4 to 18 years. In this study, 15 scales were found that assessed the participation of individuals with physical disabilities, especially individuals with CP: assistance to participate scale (APS); children helping out: responsibilities, expectations, and supports (CHORES); children’s leisure assessment scale (CLASS); child and adolescent scale of environment (CASE); pediatric activity card sort (PACS); pediatric interest profile (PIP); children’s assessment of participation and enjoyment/preferences for activities of children (CAPE/PAC); school function assessment-participation section (SFA-P); children participation questionnaire (CPQ); assessment of life habits (LIFE-H); pediatric community participation questionnaire (PCPQ); child and adolescent scale of participation (CASP); participation in childhood occupations questionnaire (PICO-Q); activities scale for kids (ASK); and children participation assessment scale (CPAS-C/P). Among these assessment scales, only 9 (APS, ASK, CPQ, SFA, LIFE-H, PCPQ, CAPE/PAC, and CPAS-C/P) were used for individuals with CP, and the psychometric properties of these 9 outcome measures were available in CP.
LIFE-H is an outcome measure that is translated into more than one language. The usability of this scale is shown in French, English, Dutch, Danish, German, Italian, Swedish, and Farsi. The age range of this scale provides another advantage that applies to individual from 0 to +65 years old. This scale is ICF-based and its utility in other populations rather than children with CP, such as cerebral vascular accident, Parkinson disease, and elderly people are available as well [
19,
30].
Each assessment scale has its own advantages and disadvantages, but the most important issue is that the assessment scale should be culturally relevant to the main society. The rationale behind most studies for the development of a new scale was to have an assessment scale culturally relevant to society [
24]. Accordingly, as participation is a broad concept and is the main dimension in ICF, the variety of participation assessment scales has changed over time [
12,
28]. Among these assessment scales, the CPAS-P/C is the only outcome measure that assesses all areas of participation based on OTPF (ADL, play, IADL, sleep/rest, social participation, leisure, work, and education), and is suitable for 6- to 12-year-old children with CP [
24].
In a large study of child and family follow-up survey (CFFS), Gary Bedell et al. developed CASE and CASP for assessing the participation of individuals with acquired brain injuries [
14,
21]. The content of these two scales appears suitable for individuals with CP; however, their psychometric properties should be assessed in individuals with CP as well.
Good documentation and having a common language between rehabilitation specialists and other physicians may help occupational therapists to have good intervention and influence individuals with CP. Therefore, one approach that can help rehabilitation specialists is assessing the participation of children with CP in all life areas.
In this study, the participation assessment scales for individuals with CP have been introduced, so that rehabilitation specialists in the field of children with CP, especially occupational therapists, can use these scales to provide better service to their clients.
5. Conclusion
Rehabilitation interventions aim to improve the participation of individuals with CP in all life areas. OTPF-III demonstrates 8 occupational dimensions throughout one’s life (play, work, ADL, leisure, IADL, education, social participation, and rest/sleep). To enhance the quality of life in individuals with CP, all dimensions are necessary. It should be noted that neither dimension is preferred over the other. It is important to use participation assessment tools to plan and provide appropriate interventions for the participation of children with CP. Therefore, rehabilitation professionals with the knowledge of different types of participation evaluation scales can provide the best service for people with CP.
Ethical Considerations
Compliance with ethical guidelines
All ethical principles are considered in this article. The participants were informed of the purpose of the research and its implementation stages. They were also assured about the confidentiality of their information and were free to leave the study whenever they wished, and if desired, the research results would be available to them.
Funding
This research did not receive any grant from funding agencies in the public, commercial, or non-profit sectors.
Authors' contributions
All authors equally contributed to preparing this article.
Conflict of interest
The authors declare no conflict of interest.
Acknowledgments
We thank the Schools of Rehabilitation Sciences of Shahid Beheshti and Iran University of Medical Sciences. In addition, we express our gratitude to all who assisted us in conducting and writing this article.
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