Search

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. [ABSTRACT FROM AUTHOR]

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). A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. 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. This article identifies components of healthcare that families find helpful and desirable. Family-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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. 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. Common challenges to culturally adapting PEM content and administration are identified and methodological strategies to mitigate these challenges are proposed. 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. The 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. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

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. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodResultsConclusions\nIMPLICATIONS FOR REHABILITATIONTo explore the nature and meaning of metaphors used by parents of children with disabilities when describing their healthcare experiences.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.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.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.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. [ABSTRACT FROM AUTHOR]