Mary Khetani

Measuring participation of children with disabilities: Issues and challenges

Purpose. The aim of this paper is to examine conceptual issues that challenge development of valid and useful measures of childrens participation. Method. Ambiguities in the current definition of participation in the International Classification of Functioning, Disability and Health (ICF) are examined along with their implications for developing valid measures for children and youth. Results. Developers of new measures must address three key issues that will affect the ultimate meaning of participation data obtained from these instruments: uncertain criteria to distinguish activity from participation; lack of consensus on whether measures should address objective or subjective aspects of participation or both; and appropriate choice of respondent when children are the focus. Variations in how the participation construct is operationalized challenge ones ability to develop a coherent body of knowledge about childrens participation and the factors that influence it. Conclusion. Given current variations in how participation is being defined, both developers and users of measures of participation need to be explicit about the definition of participation that a particular measure represents and the inferences that can be drawn from the scores.

Psychometric evaluation of the Participation and Environment Measure for Children and Youth.

Aim  The aim of this study was to examine the psychometric properties (reliability and validity) of the Participation and Environment Measure for Children and Youth (PEM‐CY).

Development of the participation and environment measure for children and youth: conceptual basis

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure − Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities. Implications for Rehabilitation As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure. A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities. The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

The Mediating Role of the Environment in Explaining Participation of Children and Youth With and Without Disabilities Across Home, School, and Community

OBJECTIVE To test the effect of personal and environmental factors on childrens participation across 3 different settings (home, school, community); to ascertain the interrelations between these factors; and to propose and test 3 models, 1 for each setting, using structural equation modeling. DESIGN Survey, cross-sectional study, and model testing. SETTING Web-based measures were completed by parents residing in North America in their home/community. PARTICIPANTS Parents (N=576) of children and youth with and without disabilities, (n=282 and n=294, respectively), ages 5 to 17 years (mean age, 11y 2mo), completed the Participation and Environment Measure for Children and Youth (PEM-CY). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The PEM-CY measured levels of participation frequency and involvement, as well as environmental barriers and supports of participation, in each of the following 3 settings: home, school, and community. Information about the childs health condition and functional issues was also collected. RESULTS All 3 models fit the data well (comparative fit index, .89-.97) and explained 50% to 64% of the variance of participation frequency and involvement. Environmental barriers and supports served as significant mediators between child/personal factors (income, health condition, functional issues) and participation outcomes, across all models. The effect of the environment was most pronounced, however, in the community setting. CONCLUSIONS Our findings highlight the unique role of the environment in explaining childrens participation across different settings and, therefore, support the development of interventions targeting modifiable environmental factors.

School participation, supports and barriers of students with and without disabilities

BACKGROUND We compared school participation patterns of students ages 5-17 with and without disabilities and examined whether features of the school environment were perceived to help or hinder their participation. METHODS Parents (n = 576) residing in the USA and Canada completed the Participation and Environment Measure for Children and Youth (PEM-CY) via the internet. RESULTS Parents of students with disabilities reported that their children participated less frequently in school clubs and organizations and getting together with peers outside the classroom and that they were less involved in all school activities. Parents of students with disabilities also were significantly more likely to report that features of the environment hindered school participation and that resources needed to support their childs participation were not adequate. CONCLUSIONS Parents of students with disabilities report that their children are participating less in important school-related activities. Barriers limiting school participation include features of the physical and social environment as well as limited resources.

Participation in the Home Environment among Children and Youth with and without Disabilities

Introduction: This study examines participation patterns and environmental supports and barriers for children with and without disabilities within their home setting. Method: The Participation and Environment Measure for Children and Youth (PEM-CY) is a newly developed, reliable parent/caregiver-report tool, which combines assessment of childrens participation and the environment. The PEM-CY was completed online by 576 parents of children or youth (5 to 17 years old) with and without disabilities from Canada and the United States. ANOVA analyses were performed to examine group differences in PEM-CY summary scores. Item-level differences are presented descriptively using radar plots. Results: After controlling for age and income, significant differences between children with and without disabilities were observed for all home-based PEM-CY participation and environment summary scores. Differences between the two groups were also evident at the item level, particularly when comparing the percentage of children and youth who never participate in specific home-based activities and when comparing perceived barriers to participation. Conclusion: Although all children and youth participate frequently in home-based activities, those with disabilities tend to participate in less complex and quieter/sedentary activities. This, in addition to parental report of environmental barriers to participation, highlights the potential importance of home-based occupational therapy intervention to optimise participation in this setting.

Psychometric properties of the Young Children's Participation and Environment Measure.

OBJECTIVE To evaluate the psychometric properties of the newly developed Young Childrens Participation and Environment Measure (YC-PEM). DESIGN Cross-sectional study. SETTING Data were collected online and by telephone. PARTICIPANTS Convenience and snowball sampling methods were used to survey caregivers of children (N=395, comprising children with [n=93] and without [n=302] developmental disabilities and delays) between the ages of 0 and 5 years (mean age±SD, 35.33±20.29 mo) and residing in North America. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The YC-PEM includes 3 participation scales and 1 environment scale. Each scale is assessed across 3 settings: home, daycare/preschool, and community. Data were analyzed to derive estimates of internal consistency, test-retest reliability, and construct validity. RESULTS Internal consistency ranged from .68 to .96 and .92 to .96 for the participation and environment scales, respectively. Test-retest reliability (2-4 wk) ranged from .31 to .93 for participation scales and from .91 to .94 for the environment scale. One of 3 participation scales and the environment scale demonstrated significant group differences by disability status across all 3 settings, and all 4 scales discriminated between disability groups for the daycare/preschool setting. The participation scales exhibited small to moderate positive associations with functional performance scores. CONCLUSIONS Results lend initial support for the use of the YC-PEM in research to assess the participation of young children with disabilities and delays in terms of (1) home, daycare/preschool, and community participation patterns; (2) perceived environmental supports and barriers to participation; and (3) activity-specific parent strategies to promote participation.

Community participation patterns among preschool-aged children who have received Part C early intervention services

BACKGROUND We examined activity-specific patterns and child, family and environmental correlates of participation restriction in nine community-based activities among preschoolers with disabilities who have received Part C early intervention services. METHODS Data were gathered from a subsample of 1509 caregivers whose children (mean age = 67.7 months) had enrolled in the National Early Intervention Longitudinal Study (NEILS) and completed a 40-min computerized telephone interview or 12-page mailed survey. Data were analysed on cases with complete data on the variables of interest. Bivariate relationships were examined between variables, including patterns of co-reporting participation difficulties for pairs of community activities. RESULTS Caregivers were more than twice as likely to report difficulty in one activity (20%) than difficulties in 2-3, 4-5, or 6-9 activities. Co-reporting paired difficulties was strong for activities pertaining to neighbourhood outings but less conclusive for community-sponsored activities and recreation and leisure activities. Our data show strong and positive associations between child functional limitations in mobility, toileting, feeding, speech, safety awareness, and friendships and participation difficulty in 7-9 activities. Lower household income was associated with participation difficulty in 7 out of 9 activities and difficulty managing problematic behaviour was strongly associated with participation difficulty in all 9 activities. Each of the three environmental variables (limited access to social support, transportation and respite) was associated with participation restrictions in all nine activities. CONCLUSION Results provide practitioners with detailed descriptive knowledge about modifiable factors related to the child, family and environment for promoting young childrens community participation, as well information to support development of a comprehensive assessment tool for research and intervention planning to promote community participation for children enrolled in early intervention.

Functional Recovery following Critical Illness in Children: the “Wee-cover” Pilot Study

Objective: To determine the feasibility of conducting a longitudinal prospective study to evaluate functional recovery and predictors of impaired functional recovery in critically ill children. Design: Prospective pilot study. Setting: Single-center PICU at McMaster Children’s Hospital, Hamilton, Canada. Patients: Children aged 12 months to 17 years, with at least one organ dysfunction, limited mobility or bed rest during the first 48 hours of PICU admission, and a minimum 48-hour PICU length of stay, were eligible. Patients transferred from a neonatal ICU prior to ever being discharged home, already mobilizing well or at baseline functional status at time of screening, with an English language barrier, and prior enrollment into this study, were excluded. Interventions: None. Measurements and Main Results: The primary outcome was feasibility, as defined by the ability to screen, enroll eligible patients, and execute the study procedures and measurements on participants. Secondary outcomes included functional status at baseline, 3 and 6 months, PICU morbidity, and mortality. Functional status was measured using the Pediatric Evaluation of Disability Inventory and the Participation and Environment Measure for Children and Youth. Thirty-three patients were enrolled between October 2012 and April 2013. Consent rate was 85%, and follow-up rates were 93% at 3 months and 71% at 6 months. We were able to execute the study procedures and measurements, demonstrating feasibility of conducting a future longitudinal study. Functional status deteriorated following critical illness. Recovery appears to be influenced by baseline health or functional status and severity of illness. Conclusion: Longitudinal research is needed to understand how children recover after a critical illness. Our results suggest factors that may influence the recovery trajectory and were used to inform the methodology, outcomes of interest, and appropriate sample size of a larger multicenter study evaluating functional recovery in this population.

Parent Perspectives of Participation in Home and Community Activities when Receiving Part C Early Intervention Services.

The authors examined the extent to which parent expectations, perceptions about resource availability and supports, and strategies used to promote participation in home and community activities varied by setting and activity type. Sixteen 90-min semistructured interviews were completed with families receiving Part C early intervention services in three states. Interviews were analyzed in descriptive and interpretive phases using content analysis to identify patterns across cases and logical analysis to cross-classify data and identify patterns by setting and activity type. Parents described how often and how much their children participated but had different ways of describing their expectations depending on the activity setting and/or its purpose. Parent-reported strategies to promote participation provided a direct way of understanding how environments were perceived to impact participation. Implications for tailoring interventions to address the needs of immigrant and nonimmigrant families receiving Part C services are discussed.