Participation of children with disabilities is an indicator of social inclusion, health, and well-being, and this population presents lower participation rates when compared to children without disabilities.1 The literature shows that children with cerebral palsy, the most prevalent cause of physical disability in childhood, participate less frequently in activities carried out at home, school, and in the community.2,3 Similarly, children with Down syndrome face barriers to participations such as negative behaviors, and unavailability of specialized programs and professionals, which are associated with lower participation.4 Children with autism spectrum disorders, which prevalence is on the rise, also have a lower participation frequency, are less involved in activities, and their parents identify more barriers in the environment.5 Participation restrictions, which last into adulthood, could be minimized by providing adequate support to families during childhood, delivering timely interventions, and by enhancing autonomy.6

The International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY) defines participation as “involvement in a life situation”, which for children means to participate in activities at home, in school, and in the community.7 Participation is a complex multidirectional construct,8 influenced by social, attitudinal, and physical aspects of the environment.9 Imms et al.8 have further proposed a family of participation-related constructs (fPRC), which includes attendance and involvement in relevant activities, to capture the participatory experiences of children.8 Attendance is an objective component of the family of constructs, defined as being present in a situation.8,10 Involvement is a subjective component, defined as the experience of participation including elements of motivation, persistence, social connection, and affect.8,10

In recent years novel measurement tools have been developed to enable the evaluation of participation in specific environments.11,12 The Participation and Environment Measure - Children and Youth (PEM-CY) was developed based on the theoretical framework of the ICF-CY, and through extensive conceptual work with parents of children with and without disabilities.13 The PEM-CY provides data on the patterns of participation of children and young people with and without disabilities, as well as the environmental factors that support or hinder participation in daily activities.13,14 Differently from other tools,15–17 this instrument simultaneously evaluates aspects of participation and of the environment in the home, school, and community settings. Another advantage of the PEM-CY is that it captures the elements of attendance (frequency domain) and involvement (involvement domain), thus considering the advances in the understanding of participation provided by the fPRC.8,10

The original version of the PEM-CY presents good indexes of internal consistency, test-retest reliability, and concurrent validity.14,18 The PEM-CY also has the ability to differentiate the participation and the environment between groups with different characteristics, such as children with and without disabilities, and from families across a varied range of income.14,18 Before using a tool developed in another language and context, it is necessary to perform a transcultural adaptation process, and to establish the measurement properties of the adapted version.19,20 The PEM-CY has been successfully translated and validated for other languages and cultures, including in Korea,21 China,22 Germany,23 India,24 and Turkey.25

Two recent literature reviews on children with CP showed that in Brazil, and in other low- and middle-income countries, participation is less frequently studied and explored as a rehabilitation outcome when compared to outcomes related to body structures and functions.26,27 Another recent study investigated the participation of Brazilian children with disabilities using the Children's Assessment of Participation and Enjoyment and the Preferences for Activities (CAPE & PAC), two companion measures of children's participation, but they are not available yet for use in clinical practice in Brazil.28 The availability of valid and reliable assessment tools is essential so participation starts to be used as a rehabilitation outcome. The Brazilian-Portuguese version of the PEM-CY (PEM-CY Brazil) was translated and cross-culturally adapted to Brazilian Portuguese following a structured multi-phase process,29 but its measurement properties have not yet been tested in the Brazilian population. The objective of the present study was to establish measurement properties of the PEM-CY Brazil in terms of: 1) reliability (internal consistency), and 2) construct validity (known-groups validity).

The purpose of this study was to provide evidence on the initial measurement properties of the Brazilian version of the PEM-CY. In summary, the results suggest that the PEM-CY Brazil has appropriate to high indexes of internal consistency and can discriminate the characteristics of participation and environment between children and young people with and without disabilities.

We found appropriate internal consistency indexes for all PEM-CY domains (with the exception of environmental resources in the home setting), which means that the instrument items within each of the domains measure the same construct, for both participation and environment domains. Furthermore, only two items (environment helpfulness, and overall environmental support), in the school setting, presented an alpha value greater than 0.9, which may indicate a redundancy of items in this setting.38 Our results were similar to the ones from the original version, showing indexes of internal consistency ranging from α=0.59 to α>0.80.14 The Chinese, Indian, Korean and Turkish versions of PEM-CY have also shown good internal consistency (α≥0.55, α≥0.61, α≥0.67, and α≥0.67, respectively) for all PEM-CY participation and environment settings and domains.22,24,25,39 The results of these studies performed in different countries and cultures, with their respective translated and adapted versions of the PEM-CY, as well as the present study, reinforce that the instrument is reliable for assessing participation and environment of children and young people with or without disabilities.

Construct validity is the degree to which the scores of an instrument are consistent with hypotheses, such as differences between groups (called known group validity), based on the assumption that the instrument validly measures the construct of interest.19 The literature shows that children with disabilities participate less frequently in different activities and settings than children without disabilities.40–45 Based on this assumption, and on the PEM-CY original measurement properties,14 we hypothesized that the PEM-CY Brazil would be valid to distinguish the participation and environment of Brazilian children with and without disabilities, which was confirmed by the results of this study. We identified that Brazilian children with disabilities were less involved and participated in a smaller number of activities in all settings; and have a decreased frequency of participation in the community setting compared with children without disabilities. Also, caregivers of children with disabilities desired more change in the school setting, and perceived lower levels of environmental support, more barriers and less availability of resources and environmental helpfulness in all settings compared to the group of children without disabilities. Corroborating our results, the measurement properties studies of the Chinese and Korean versions of the PEM-CY found significant differences between the participation and the environment of children with and without disabilities.22,39 Similarly, these studies found no differences between groups in the frequency of participation at home, nor in the desire for change in the home and community.22,39

The lack of differences between groups in the frequency of participation at home can be explained by the characteristics of the activities included in the PEM-CY, and by the conceptual difference between attendance and involvement.8 Activities such as “indoor play and games”, “using computer/video games”, “watching TV/videos”, and “socializing using technology” are often performed by children with disabilities in their homes, however with less involvement than their peers without disabilities.22,34,46 Indeed, the validity study of the Korean PEM-CY version found no differences in frequency of participation in any of the three settings, but did find a difference in involvement.39

Regarding the desire for change domain, it is important to consider that in the Brazilian context the concept of participation is only now being acknowledged, as it had previously been disregarded as a relevant outcome.47 This may have affected the ability of Brazilian parents in both groups to express their desire for change, given that other outcomes, such as walking, are valued more highly.48 In low- and middle-income countries (LMICs) such as Brazil, the importance of participation may be perceived differently when compared to high-income countries, where most studies still focus only on the attendance component.47 This may explain the difference between the results of our study and the original PEM-CY measurement properties study, which found differences in the desire for change between parents of children with and without disabilities.14 Our results show that parents of children with disabilities perhaps are not so optimistic for their child's to be able to participate.

In the present study, we calculated the number of activities the child participated in for each setting to explore the participation patterns of children with and without disabilities. We found that children with disabilities participated in a smaller number of activities in all settings when compared to their peers without disabilities. This coincides with studies conducted in other countries and cultures,14,15,24,49,50 and adds to the construct validity of the PEM-CY in Brazil.

It is widely recognized that participation patterns are shaped by the opportunities and supports provided by the environment.18,34,46 Corroborating with previous studies, our results identified that caregivers of children with disabilities perceive less environmental support, more barriers, and less availability of resources and environmental helpfulness compared to the group of children without disabilities in all settings,14,18,24,51,52 demonstrating that the PEM-CY Brazil is also valid to evaluate the environment where Brazilian children are.

Given the above, we suggest that the PEM-CY Brazil is a reliable and valid instrument to measure the participation and the environment of Brazilian children and youth with and without disabilities. The results obtained with PEM-CY can be used to track the participation levels and aspects of the environment through a comprehensive analysis. Such information can be instrumental in facilitating therapeutic goals being set with the family to improve the participation of children and young people at home, in school, and in the community. Considering specifically the Brazilian context, the availability of PEM-CY could contribute to modifying physical therapy practices for children with disabilities with CP, where less than 1 % of interventions aim for the outcome of participation.27

We highlight the clinical implications and the potential utility of the measure in clinical practice. For example, at the micro-level (e.g., individual client), the PEM-CY may be used to facilitate goal setting by building on the desire for change domain, and intervention-related changes in PEM-CY may be tracked; at the meso&#¿;level, it may guide program evaluation, educational settings/schools; and at the macro-level, the PEM-CY may be used to measure participation and environmental barriers across districts in Brazil to inform local policies. It should be noted that parents of children without disabilities perceived greater availability of resources and general support of the environment for community participation, which reinforces the importance of increasing context-focused interventions that target the provision of environmental supports for children and youth with disabilities to improve participation outcomes53,54 and well as the need for policy related changes to support children and families.

We recognize some limitations of the study, mainly with regard to the sample size of the group of children without disabilities and because we did not verify other measurement properties, such as test-retest reliability. Despite these limitations, the study demonstrated that PEM-CY was able to detect differences between groups in most of the domains investigated. To confirm the findings of this study, research recruiting a larger sample, and investigating other measurement properties should be performed. Another limitation was the heterogeneity in administration methods (self-administered with or without help, interview), but we think that this difference did not influence the results, as only a small proportion of participants used the interview method. Including participants who have difficulty filling out the form alone was a choice made by the study group as it is more inclusive, but we recommend that future studies explore the potential role of these methods in the results.

Results indicate that the PEM-CY Brazil presents good internal consistency and construct (known-groups) validity to evaluate the participation and the environment of Brazilian children and youth between 5 and 17 years of age with and without disabilities.