Environment-based approaches to improve participation of young people with physical disabilities during COVID-19.

AIM: To examine the effects of the Pathways and Resources for Engagement and Participation (PREP) intervention during the COVID-19 pandemic on (1) activity performance and satisfaction, and (2) motor, cognitive, and affective body functions. METHOD: An interrupted time-series design with multiple baselines across 21 young people (13 females, eight males) aged 16 to 25 years (median = 21 years 5 months) with physical disabilities was employed. The young people engaged in an 8-week self-chosen leisure activity (e.g. football, piano, photography) at their home or community. The Canadian Occupational Performance Measure (COPM) assessed activity performance and satisfaction weekly. Mental health problems, including affective and cognitive outcomes, were assessed weekly using the Behavior Assessment System for Children, Third Edition. Motor functions (e.g. trunk control, reaching, strength) were assessed biweekly. Linear mixed-effects models were used. RESULTS: The intervention had large effects on activity performance (0.78) and satisfaction (0.88) with clinically significant change in COPM scores (2.6 [95% confidence interval {CI}: 2.0-3.2] and 3.2 points [95% CI: 2.4-3.9] respectively). Young people without mental health problems at baseline benefited more from the intervention (p = 0.028). Improvements in at least one domain of body function occurred in 10 young people especially for motor outcomes. INTERPRETATION: Results demonstrate the effectiveness of PREP during adverse times and suggest benefits going beyond participation, involving outcomes at the body-function level. WHAT THIS PAPER ADDS: Environmental-based interventions can improve participation even during adverse times such as the COVID-19 pandemic. Significant improvement with large effect sizes occurred in both activity performance and satisfaction. Intervention was effective for all; those without mental health problems benefited more. Improvements in body-function outcomes were partially observed, especially in motor-related outcomes. Body functions may improve through participation even if not targeted by the intervention.

"From All, To All": Implementing a collaborative online conference to reflect on the daily living of individuals with cerebral palsy.

BACKGROUND: Translating knowledge to improve paediatric rehabilitation has become a research area of interest. This study describes the development and evaluation of an online conference that brought together perspectives of individuals with cerebral palsy (CP), families, health care professionals, and researchers to discuss the daily living of individuals with CP. METHODS: We anchored the development and implementation of the online conference in the action cycle of the Knowledge to Action Framework. To develop the meeting, we included representatives from each stakeholder group in the programme committee. The conference programme was designed having the lifespan perspective of individuals with CP, from birth to adulthood, as its central core, with themes related to daily living (e.g., self-care, mobility, and continuing education). Participants' satisfaction with the conference was assessed using an anonymized online survey sent to all participants. RESULTS: The conference had 1656 attendees, of whom 675 answered the online satisfaction survey. Most participants rated the structure of the conference (i.e., quality of the technical support, audio and video, and online platform) and discussed topics (i.e., relevance, content, discussion, speakers, and available time) positively. CONCLUSION: Collaborative conferences that include stakeholders throughout the planning and implementation are a viable, effective knowledge translation strategy that allows for sharing experiences and disseminating knowledge among families and individuals with CP, health care professionals, and researchers.

Family-centredness of a provincial autism programme: A quality assurance evaluation using the Measure of Processes of Care.

BACKGROUND: University researchers worked with 13 children's service provider agencies to conduct a programme evaluation of parents' perceptions of the family-centredness of service spanning 3 years (January 2015 to May 2018). Parents of Ontario children with autism spectrum disorder (ASD) receiving applied behaviour analysis (ABA) programming reported outcomes of their experience of family-centred services (FCS) using the 20-item Measure of Processes of Care (MPOC-20). The purpose of this paper is to report the outcomes of the quality assurance evaluation of FCS as measured by MPOC-20 among parents of children with ASD receiving ABA services. METHODS: A total of 11 490 surveys (from 21 571 potential respondents [53.3%]) were completed. Means and proportions were used to describe the demographics, service utilization and MPOC-20 scores with its 7-point Likert scales, ranging from 1 (lowest) to 7 (highest). RESULTS: The overall provincial MPOC scores were consistent over the 3 years, ranging from very good to excellent, with Respectful and Supportive Care (n = 11 348, x¯  = 6.27, SD = 0.83) reporting the highest scale score and Providing General Information (n = 10 485, x¯  = 5.51, SD = 1.43) the lowest. CONCLUSION: Given the consistently high MPOC scores found in this and other programme evaluations, it is believed that health service providers have caught up to the FCS quality standards proposed 30 years ago. For this reason, the developers of MPOC are now planning a revision of the measure to address its ceiling effects and to integrate contemporary perspectives on family-centred practice for children and their families.

Electronic participation-focused care planning support for families: a pilot study.

AIM: To evaluate the feasibility, acceptability, and preliminary effects of Participation and Environment Measure-Plus (PEM+) 2.0, an optimized version of a web-based, participation-focused, care-planning tool. METHOD: Twenty-two caregivers of children aged 0 to 5 years receiving rehabilitation services, who reported dissatisfaction with their child's participation, had internet access, and could read and write English, were recruited for this 2-week, single-arm pilot trial. Feasibility was assessed through retention rates, completion time, percentage of care plans developed relative to caregiver reported need, and independent completion of PEM+ 2.0. Acceptability was assessed by the Usefulness, Satisfaction, and Ease of Use Questionnaire. Preliminary effects were assessed by two items on caregiver reported impact of PEM+ 2.0 on confidence for addressing their child's participation. RESULTS: Eighteen caregivers completed at least one iteration of PEM+ 2.0; of those, 17 were female and 15 were 30 to 39 years old. The median completion time was 12.99 minutes (quartile 1, 6.30; quartile 3, 17.33), mean care plan creation relative to need was 50% (standard deviation [SD] 31), and 17 completed PEM+ 2.0 independently. Mean acceptability scores were 3.80 to 4.97 (SD 1.25-1.97) and mean preliminary effect scores were 4.61 to 4.72 (SD 1.85-2.24), out of 7.0. There were strong and significant positive associations between two of the three estimates of PEM+ 2.0 acceptability and caregiver confidence (r=0.577-0.793, p<0.01). INTERPRETATION: Electronic health tools have the potential for facilitating family-centered care in pediatric rehabilitation. PEM+ 2.0 is a feasible tool within pediatric rehabilitation and has potential to be an acceptable tool for improving caregiver confidence for promoting their child's participation in valued activities. WHAT THIS PAPER ADDS: Participation and Environment Measure-Plus (PEM+) 2.0 is feasible for collaboratively engaging caregivers in the care-planning process. Caregivers perceived PEM+ 2.0 as helpful for thinking about their child's participation and what can be done to improve it. Feasibility and acceptability results will inform PEM+ 2.0 optimizations.

Improving body functions through participation in community activities among young people with physical disabilities.

AIM: To examine the impact of engagement in a self-chosen community-based activity on three relevant body functions (motor, cognitive, and affective) as well as on the performance of the selected activity. METHOD: An individual-based interrupted time series design with multiple baselines was used. Seven young people (four males, three females) aged 15 to 25 years (median 18y; interquartile range 17-20y) with physical disabilities participated in an 8-week community activity of choice (e.g. swimming, playing piano). Change in three relevant body functions, underpinning the specific chosen activity, including motor (e.g. Functional Reach Test, Trunk Impairment Scale, dynamometers), cognitive and affective (Behavior Assessment System for Children), as well as activity performance (Canadian Occupational Performance Measure) were measured repeatedly, providing individual outcome trajectories. Linear and mixed-effects models were used. RESULTS: Significant improvements in at least one aspect of motor function (6 out of 6), cognition (3 out of 3), affect (5 out of 7), and performance (7 out of 7) were observed. Specifically, the intervention had a moderate to large effect on hyperactivity (1.45, 95% confidence interval [CI] 1.0-1.9) with a smaller effect on anxiety (0.21, 95% CI 0.10-0.32) and inadequacy (0.21, 95% CI 0.02-0.39). Concurrently, a notable effect size for activity performance (4.61, 95% CI 0.76-8.46) was observed. Average change across motor outcomes was substantial (3.7 SDs from baseline), yet non-significant. INTERPERTATION: Findings provide initial evidence of the benefits resulting from participation-based interventions, emphasizing the merit of meaningful 'real-life' young people-engaging therapy. WHAT THIS PAPER ADDS: Participation-based interventions can impact body-function level outcomes. Significant improvements in the performance of chosen activities were observed. Significant improvements were also seen in cognitive and affective body functions. Improvements in motor-related outcomes were substantial but not statistically significant.

Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries.

BACKGROUND: Concepts such as participation and environment may differ across cultures. Consequently, to use a measure like the Participation and Environment Measure for Children and Youth (PEM-CY) in other than the original English-speaking contexts, cultural adaptation needs to be assured. The aim of this study was to cross-culturally translate and adapt the PEM-CY into German as it is used in Germany, Austria and Switzerland. METHODS: Fifteen parents of children and adolescents with disabilities from three German speaking countries participated in three rounds of think-aloud interviews. We followed the procedure of cultural equivalence guidelines including two additional steps. Data was analyzed by content analysis using semantic, idiomatic, experiential and conceptual equivalence. RESULTS: Results show adaptations mainly focused on experiential and conceptual equivalence, with conceptual equivalence being the most challenging to reach. Examples of experiential equivalence included adapting the examples of activities in the PEM-CY to reflect those typical in German speaking countries. Conceptual equivalence mainly addressed aspects of "involvement" and "environment" of children and adolescents and was reached through adaptations such as enhanced instructions and structures, and additional definitions. CONCLUSIONS: This study presents a cross-cultural translation and adaptation process to develop a German version of the PEM-CY that is suitable for Germany, Austria and Switzerland. Using a modified cultural adaptation process, a culturally adapted version of PEM-CY (German) is now available for research, practice and further validation.

Usability of the Participation and Environment Measure Plus (PEM+) for Client-Centered and Participation-Focused Care Planning.

IMPORTANCE: The Participation and Environment Measure Plus (PEM+) is a new electronic health application to help caregivers contribute to client-centered and participation-focused care planning for their young child. The PEM+ is designed to help caregivers build on their participation assessment by determining priority activities, setting specific goals, and identifying strategies for goal attainment. OBJECTIVE: To examine the usability of the PEM+. DESIGN: A single-arm usability trial. SETTING: Two early intervention and early childhood educational programs. PARTICIPANTS: Six caregivers of children ages 0-3 yr with developmental delay and receiving rehabilitation services. INTERVENTION: Caregivers who were eligible and enrolled were given access to the PEM+ for 1 wk and instructed to complete one iteration. OUTCOMES AND MEASURES: Usability was assessed according to caregivers' report of PEM+'s technical effectiveness and ease of use, ease of learning, and user satisfaction via the Usefulness, Satisfaction, and Ease of Use questionnaire. RESULTS: All caregivers completed the PEM+ online once and in its entirety (mean completion time = 13.6 min). Mean technical effectiveness ratings ranged from 5.7 to 6.3 out of 7.0, and mean ease of use, ease of learning, and user satisfaction ratings were 4.4, 5.4, and 4.2 out of 6.0, respectively. CONCLUSIONS AND RELEVANCE: Caregivers of young children can navigate the PEM+. Trends in survey feedback informed optimizations for the PEM+ before further feasibility testing. WHAT THIS ARTICLE ADDS: This study provides preliminary evidence for a promising tool that can help to customize the way practitioners partner with families to create a plan for occupational therapy services.

Improving the participation of youth with physical disabilities in community activities: An interrupted time series design.

BACKGROUND/AIM: Youth with physical disabilities experience restrictions to participation in community-based leisure activities; however, there is little evidence about how to improve their involvement. This study examined whether an intervention to remove environmental barriers and develop strategies using a coaching approach improved youth participation in leisure activities. METHODS: An Interrupted Time Series design was employed, where replication of the intervention effect was examined across individualised participation goals and across participants. Six adolescents with a physical disability participated in a 12-week intervention. An occupational therapist worked with each youth and his/her family to set three leisure goals based on problems identified using the Canadian Occupational Performance Measure (COPM). A coaching approach was used to collaboratively identify and implement strategies to remove environmental barriers. Interventions for each goal were introduced at different time points. Outcomes were evaluated using the COPM. RESULTS: Improvements in COPM performance scores were clinically significant for 83% of the identified activities; an average change of 4.5 points in the performance scale (SD = 1.95) was observed. Statistical analysis using the celeration line demonstrated that the proportion of data points falling above the line increased in the intervention phase for 94% of the activities, indicating a significant treatment effect. CONCLUSIONS: This study is the first to examine an intervention aimed at increasing leisure participation by changing only the environment. The results indicate that environment-focussed interventions are feasible and effective in promoting youth participation. Such findings can inform the design of a larger study and guide occupational therapy practice.

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 children's 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 child's 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 children's participation across different settings and, therefore, support the development of interventions targeting modifiable environmental factors.

Illuminating their reality: the use of metaphor by parents of children with disabilities to express their experiences of health care.

PURPOSE: To explore the nature and meaning of metaphors used by parents of children with disabilities when describing their healthcare experiences. METHOD: A systematic procedure was used to identify and analyze metaphors spontaneously mentioned by parents in 13 focus groups held with 65 Canadian parents of children with disabilities. Attention was paid to identifying deep (i.e., meaningful) metaphors rather than common expressions. RESULTS: A total of 214 deep metaphors were identified and categorized into four target-source groupings. Parents used journey metaphors to describe experiences of uncertainty, conflict and harm metaphors to describe confrontational, harmful, and demeaning experiences of care, games and puzzles to describe the unknowns of care and attempts to resolve these unknowns, and metaphors concerning environmental barriers (i.e., walls and doors) to express feelings of exclusion and difficulties accessing care. CONCLUSIONS: Parents' metaphors expressed experiences of uncertainty, powerlessness, and attempts to exert agency in healthcare interactions. The metaphorical groupings provide new insights into how and why lack of family-centeredness in service delivery is bewildering, distressing, and disempowering to parents. Implications for service providers include paying attention to what metaphor use reveals about parents' experiences, and discussing parents' metaphors with them to create joint understanding, providing a fertile ground for collaboration.

Study findings indicated a clear lack of family-centeredness in gaining access to services, communicating with service providers and being listened to, and in decision-making power.Given that many service providers believe they are family-centered, the strong negative connotations of the metaphors used by parents are surprising and worrisome.Parents' use of metaphors not only reflects a lack of family-centered care, but indicates that parents experience unintentional harm in their interactions with service providers.Service providers can benefit from knowing the fundamental issues of uncertainty and power that underlie parents' use of metaphors to communicate vividly the tensions and issues they face.

Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health.

BACKGROUND: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions. AIMS: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery. METHODS AND PROCEDURES: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis. RESULTS: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized. CONCLUSIONS: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.

Community participation, supports, and barriers of school-age children with and without disabilities.

OBJECTIVE: To examine patterns of community participation and environmental factors that affect community participation for school-age children with and without disabilities. DESIGN: Cross-sectional, descriptive, and exploratory study. SETTING: Parents from the United States and Canada completed the main outcome measure online in their homes or communities. PARTICIPANTS: Parents (N=576) reported on their children aged 5 to 17 years with disabilities (n=282) and without disabilities (n=294). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation and Environment Measure for Children and Youth. RESULTS: Group differences in summary scores and many items were significant (P<.001). Children with disabilities participated less frequently, were less involved, and had less environmental support in the community than children without disabilities. Parents of children with disabilities desired more change in their child's participation than parents of children without disabilities. Effect sizes for summary scores were moderate to very large (n(2)p from .11-.40), with the largest group difference found in environment scores. Overall, the largest group differences in participation were in "unstructured physical activities" and "getting together with other children"-also the 2 areas where parents of children with disabilities most frequently desired change. The largest differences in environmental impact were in physical, social, and cognitive activity demands and availability/adequacy of programs and services. CONCLUSIONS: Results provide insights about where greater efforts are needed to support community participation of school-age children with disabilities. Further study with a more diverse sample in terms of race/ethnicity, family income/education levels, and geographic region is needed to determine the extent to which results may be generalized.

What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities.

PURPOSE: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. RESULTS: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. CONCLUSIONS: This article identifies components of healthcare that families find helpful and desirable.Implications for RehabilitationFamily-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare.However, parents continue to experiences aspects of care that are not family-centred.Parents of children with disabilities identified components of care that they want from healthcare services.New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.

Diversified caregiver input to upgrade the Young Children's Participation and Environment Measure for equitable pediatric re/habilitation practice.

BACKGROUND: Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children's Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically minoritized caregivers' responses to revised YC-PEM content modifications and their perspectives on core intelligent virtual agent functionality needed to improve its reach for equitable service design. METHODS: Caregivers were recruited during a routine early intervention (EI) service visit and met five inclusion criteria: (1) were 18 + years old; (2) identified as the parent or legal guardian of a child 0-3 years old enrolled in EI services for 3 + months; (3) read, wrote, and spoke English; (4) had Internet and telephone access; and (5) identified as a parent or legal guardian of a Black, non-Hispanic child or as publicly insured. Three rounds of semi-structured cognitive interviews (55-90 min each) used videoconferencing to gather caregiver feedback on their responses to select content modifications while completing YC-PEM, and their ideas for core intelligent virtual agent functionality. Interviews were transcribed verbatim, cross-checked for accuracy, and deductively and inductively content analyzed by multiple staff in three rounds. RESULTS: Eight Black, non-Hispanic caregivers from a single urban EI catchment and with diverse income levels (Mdn = $15,001-20,000) were enrolled, with children (M = 21.2 months, SD = 7.73) enrolled in EI. Caregivers proposed three ways to improve comprehension (clarify item wording, remove or simplify terms, add item examples). Environmental item edits prompted caregivers to share how they relate and respond to experiences with interpersonal and institutional discrimination impacting participation. Caregivers characterized three core functions of a virtual agent to strengthen YC-PEM navigation (read question aloud, visual and verbal prompts, more examples and/or definitions). CONCLUSIONS: Results indicate four ways that YC-PEM content will be modified to strengthen how providers screen for unmet participation needs and determinants to design pediatric re/habilitation services that are responsive to family priorities. Results also motivate the need for user-centered design of an intelligent virtual agent to strengthen user navigation, prior to undertaking a community-based pragmatic trial of its implementation for equitable practice.

A guiding process to culturally adapt assessments for participation-focused pediatric practice: the case of the Participation and Environment Measures (PEM).

PURPOSE: There is unprecedented opportunity to evaluate children's participation in diverse cultural contexts, to enhance cross-cultural research, advance the delivery of culturally responsive pediatric rehabilitation, and translate new knowledge on a global scale. The participation concept is complex and heavily influenced by a child's context. Therefore, effectively capturing the participation concept requires valid, reliable, and culturally sensitive participation-focused measures. This perspective paper proposes a structured process for culturally adapting measures of participation for children and youth with disabilities. METHODS: Elements of the Applied Cultural Equivalence Framework and Beaton and colleagues' six-step process were used to create a guiding process for culturally adapting a Participation and Environment Measure (PEM) while drawing on two distinct cultural contexts. This process included forward and back language translations, and semi-structured cognitive interviews, to develop adapted versions of the PEM that are ready for psychometric validation. RESULTS: Common challenges to culturally adapting PEM content and administration are identified and methodological strategies to mitigate these challenges are proposed. CONCLUSIONS: The proposed process can guide rehabilitation specialists and researchers in adapting participation measures that are suitable for their culture. Such a process can facilitate scalable implementation of evidence-based tools to support participation-based practice in the rehabilitation field.Implications for RehabilitationThe use of a systematic process can harmonize efforts by rehabilitation researchers and service providers to effectively culturally adapt pediatric participation measures to optimize its impact for culturally sensitive research and practice targeting participation.Two distinct, yet complementary, illustrative exemplars showcase the range of considerations and strategies, such as by conducting consecutive rounds of cognitive interviews, when teams use this systematic process to cultural adapt a pediatric participation measure.The systematic process outlined in this paper promotes rigor in achieving all elements of cultural equivalency, when feasible, to best ensure that the participation measure is suitable for use in the target cultural context.

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). METHOD: The PEM-CY examines participation frequency, extent of involvement, and desire for change in sets of activities typical for the home, school, or community. Items in the 'Environment' section examine perceived supports and barriers to participation within each setting. Data were collected via an online survey from caregivers of children and young people, aged 5 to 17 years, with and without a range of different disabilities, residing in the USA and Canada. Caregivers were eligible for inclusion if (1) they identified themselves as a parent or legal guardian of the child who was the focus of the survey; (2) they were able to read English; and (3) their child was between 5 and 17 years old at the time of enrolment. RESULTS: Data were obtained from 576 respondents. About half were parents of children with disabilities and a little more than half were from Canada. Child mean age was 11 years (SD 3.1y); 54% were male and 46% were female. Internal consistency was moderate to good (0.59 and above) across the different scales. Test-retest reliability was moderate to good (0.58 and above) across a 1- to 4-week period. There were large and significant differences between the groups with and without disabilities on all participation and environment scales. Although there were some significant age differences, they did not follow a consistent pattern. INTERPRETATION: Results support the use of the PEM-CY for population-level studies to gain a better understanding of the participation of children and young people and the impact of environmental factors on their participation.

Cross-Cultural Adaptation and Evaluation of the Participation and Environment Measure for Children and Youth to the Indian Context-A Mixed-Methods Study.

Culturally appropriate measures enable knowledge transfer and quality improvement of rehabilitation services in diverse contexts. The Applied Cultural Equivalence Framework (ACEF) was used in a two-phased mixed methods study to adapt and evaluate the Participation and Environment Measure-Children and Youth (PEM-CY) in India. Cognitive interviews with caregivers of children with disabilities (n = 15) aged 5-17 years established conceptual, item, semantic, and operational equivalence of the Indian PEM-CY. Construct validity was assessed by comparing PEM-CY scores of children with and without disabilities (n = 130) using a case-control design. Cognitive interviews resulted in operational (60.3%), semantic (26.4%), and item-level (13.2%) modifications in the PEM-CY with no changes at the conceptual level. Internal consistency (n = 130) was acceptable to excellent (0.61-0.87) on most scales. Test-retest reliability (n = 30) was good to excellent (ICC ≥ 0.75, Kappa 0.6-1.0) for most scales. Significant differences in all PEM-CY summary scores were found between children with and without disabilities, except for environmental supports. Children with disabilities had lower scores on frequency and involvement in activities across all settings; their caregivers desired greater change in participation and reported experiencing more environmental barriers across settings. Findings suggest the adapted PEM-CY is a valid and reliable measure for assessing the participation of Indian children.

Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute.

Knowledge translation (KT) is gaining attention in the pediatric rehabilitation field. Nossa Casa Institute is the first organization in Brazil aiming to foster cerebral palsy (CP) awareness and empower families by discussing reliable information. This study aims to build a network where individuals with CP and their families, researchers, health care professionals, and services can communicate and share experiences. In this article, we describe the experience of planning and conducting an educational and interactive online workshop to foster principles of family-centered service (FCS). We used the action cycle from the Knowledge to Action (KTA) framework to describe and ground the proposed activities. In Module 1, "Challenges and barriers to incorporate family-centered principles," we discussed the historical perspective, main principles, and challenges related to FCS implementation. Module 2, "What is my contribution to the family-centered service?" was aimed to foster strategies to improve the implementation of principles of FCS in the care of children with disabilities. In Module 3, "What can we do together?" the groups presented their ideas and suggestions. This interactive and educational workshop was an opportunity for Nossa Casa Institute to disseminate accessible and reliable information regarding FCS and to empower families to participate actively in the rehabilitation process and advocate for the best provision of care for their children. Future actions of Nossa Casa Institute include the coordination of a national conference to connect families, individuals with CP, healthcare and rehabilitation professionals, and researchers. There is also a need, and opportunity, for formal evaluation of these KT activities.

Building a culture of engagement at a research centre for childhood disability.

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.