Purpose Qualitative research studies deepen our understanding of growing up with epilepsy but are limited to the singular perspective of children or their parents at one point in childhood. A more complete view requires multiple perspectives and narrative accounts that represent development from early childhood to young adulthood. Thematic study of life narratives of 7 young people and at least one person within their families were interviewed separately (15 participants) for two interviews each (30 interviews). The objective was to obtain narratives of the life experiences, the attributions of those experiences, and crucial periods relating to quality of life (QOL) with no apriori assumptions that their lives were shaped by epilepsy. Themes were formed inductively from subthemes and codes were created based on the constant comparative method by two interviewers who iteratively co-coded the data. Results Themes emerging from the data: “Story of My Health,” “Growing by Doing,” “To Adapt or Not to Adapt,” “Supports and Challenges,” “Parent World,” and “Looking in and Out, Forward and Back”, often included components of seizure and epilepsy experiences but also mirrored life challenges of growing up in general. The only exclusively epilepsy-specific theme: “To Adapt or Not to Adapt”, was about the challenges and solutions for dealing with the uncertainty caused by seizures and potential isolation that results from others’ reactions. Conclusions There were a range of experiences related to QOL described by participants growing up with epilepsy. The ‘ingredients’ of a good life (e.g., social and self-acceptance) were consistent with QOL research for general populations, although these were often expressed as more difficult to attain when growing up with epilepsy.

Background: Despite extensive literature describing the use of social media in health research, a gap exists around best practices in establishing, implementing, and evaluating an effective social media knowledge translation (KT) and exchange strategies. Objective: This study aims to examine successes, challenges, and lessons learned from using social media within health research and to create practical considerations to guide other researchers. Methods: The Knowledge Translation Platform of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit formed a national working group involving platform staff, academics, and a parent representative with experience using social media for health research. We collected and analyzed 4 case studies that used a variety of social media platforms and evaluation methods. The case studies covered a spectrum of initiatives from participant recruitment and data collection to dissemination, engagement, and evaluation. Methods and findings from each case study as well as barriers and facilitators encountered were summarized Through iterative discussions, we converged on recommendations and considerations for health researchers planning to use social media for KT. Results: We provide recommendations for elements to consider when developing a social media KT strategy: (1) set a clear goal and identify a theory, framework, or model that aligns with the project goals and objectives; (2) understand the intended audience (use social network mapping to learn what platforms and social influences are available); (3) choose a platform or platforms that meet the needs of the intended audience and align well with the research team's capabilities (can you tap into an existing network, and what mode of communication does it support?); (4) tailor messages to meet user needs and platform requirements (eg, plain language and word restrictions); (5) consider timing, frequency, and duration of messaging as well as the nature of interactions (ie, social filtering and negotiated awareness); (6) ensure adequate resources and personnel are available (eg, content creators, project coordinators, communications experts, and audience stakeholder or patient advocate); (7) develop an evaluation plan a priori driven by goals and types of data available (ie, quantitative and qualitative); and (8) consider ethical approvals needed (driven by evaluation and type of data collection). Conclusions: In the absence of a comprehensive framework to guide health researchers using social media for KT, we provide several key considerations. Future research will help validate the proposed components and create a body of evidence around best practices for using and evaluating social media as part of a KT strategy

Background Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. Objective Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. Methods The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. Results The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. Conclusions The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.

© 2015 Dianne J. Russell, Dayle McCauley, Iona Novak, Niina Kolehmainen, Keiko Shikako-omas, Rhea D’Costa, & Jan Willem Gorter. is Open Access article is distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses /by-nc-nd/2.5/ca), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. Field Note

Purpose: To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research. Methods: A scoping review of the scientific literature using five search strategies. Quantitative and qualitative analyses using extracted data. Interpretation of results was iteratively discussed within the team, which included a parent stakeholder. Results: Searches identified 101 candidate papers; 28 were read in full to assess eligibility and 19 were included in the review. People with disabilities and their families were more frequently involved compared to other stakeholders. Stakeholders were often involved in planning and evaluating service delivery. A key issue was identifying stakeholders; strategies used to support their involvement included creating committees, organizing meetings, clarifying roles and offering training. Communication, power sharing and resources influenced how stakeholders could be engaged in the research. Perceived outcomes of stakeholder engagement included the creation of partnerships, facilitating the research process and the application of the results, and empowering stakeholders. Stakeholder engagement outcomes were rarely formally evaluated. Conclusions: There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice.

Knowledge translation (KT) is a topic of interest for researchers; however, little has been published about how to plan and prioritize KT activities. This article describes the development and outcomes of a KT strategic planning activity for a research organization. An online survey and planning meeting resulted in the identification of six priority areas: engaging families, nurturing partnerships, optimizing access to knowledge, KT capacity building, advancing KT science, and funding for future KT activities. The organization collectively determined short- and long-term objectives, strategies, and measurable outcomes for the KT priority areas. The strategic planning process helped with prioritizing KT activities and engaged members in a collaborative discussion of mutual interest. The process described may be useful for others interested in developing KT strategic plans Résumé: L’application des connaissances (AC) est devenu une topique d’intérêt pour les chercheurs, cependant peu a été publié sur la façon de planifier et de prioriser les activités d’AC. Ce rapport décrire la développement et les résultats d’une activité de planification stratégique d’AC pour une organisation de recherche. Un sondage en direct et les réunions de planification ont résulté dans l’identification des six domaines prioritaires : engagement des familles, entretenir des partenariats, optimisation l’accès aux connaissances, renforcements des capacités d’AC, avancement de la science d’AC, et financement pour les activités d’AC dans la future. L’organisation a déterminé, collectivement, les objectifs à court et à long terme, les stratégies et les résultats mesurables pour les domaines prioritaires susmentionnés. La procédure de planification stratégique ont aidé avec la priorisation des activités d’AC et a engagé des membres dans une discussion collaborative de l’intérêt mutuel. Le processus décrit peut être utile pour d’autres groupes intéressés dans le développement des plans stratégiques d’AC.

This study explored whether or not a population-based sample of children with developmental coordination disorder (DCD), with and without comorbid attention deficit/hyperactivity disorder (ADHD), experienced higher levels of psychological distress than their peers. A two-stage procedure was used to identify 244 children: 68 with DCD only, 54 with ADHD only, 31 with comorbid DCD and ADHD, and 91 randomly selected typically developing (TD) children. Symptoms of depression and anxiety were measured by child and parent report. Child sex and caregiver ethnicity differed across groups, with a higher ratio of boys to girls in the ADHD only group and a slightly higher proportion of non-Caucasian caregivers in the TD group. After controlling for age, sex, and caregiver ethnicity, there was significant variation across groups in both anxiety (by parent report, F(3,235)=8.9, p<0.001; by child report, F(3,236)=5.6, p=0.001) and depression (parent report, F(3,236)=23.7, p<0.001; child report, F(3,238)=9.9, p<0.001). In general, children in all three disorder groups had significantly higher levels of symptoms than TD children, but most pairwise differences among those three groups were not significant. The one exception was the higher level of depressive symptoms noted by parent report in the ADHD/DCD group. In conclusion, children identified on the basis of motor coordination problems through a population-based screen showed significantly more symptoms of depression and anxiety than typically developing children. Children who have both DCD and ADHD are particularly at heightened risk of psychological distress.

Background Children with disabilities and their families experience environmental barriers in the school and community environments. There is a need to understand and appropriately measure environmental factors that influence activity and participation for disabled children. The purpose of this paper is to describe the adaptation process of the Craig Hospital Inventory of Environmental Factors (CHIEF) to make it suitable as a parent proxy measure for disabled children aged 212 years. Methods The adaptation process consisted of four steps using data from previous research conducted at CanChild: (i) analysis of itemtotal correlations from all items on the CHIEF; (ii) frequency of endorsement; (iii) determination of the representativeness of the questions; and (iv) correlations on selected items. Once the items were selected, a testretest reliability study was conducted. Results The internal consistencies () for the time 1 and time 2 administrations were 0.76 and 0.78, respectively. Testretest reliability of the questionnaire was ICC = 0.73 for the total product score. Conclusion The 10-item CHIEF for ChildrenParent Version is an acceptable, easy-to-complete and reliable measure of perceived environmental barriers for disabled children 212 years of age.

AimThe aim of this study was to compare the accuracy of two abbreviated approaches for estimating Gross Motor Function Measure 66 (GMFM‐66) scores against the full GMFM‐66 and to explore their strengths and limitations.MethodAn existing dataset (n=224) comprising children aged 1 to 13 years (mean age 6y 11mo, SD 4y 6mo; 132 males, 92 females) with cerebral palsy (CP) of all Gross Motor Function Classification System (GMFCS) levels was used to compare the validity of the item set version (GMFM‐66‐IS) and the basal and ceiling version (GMFM‐66‐B&C) with the full GMFM‐66 scores. Follow‐up assessment at 1 year (n=109) allowed evaluation of change scores and accuracy at a single point in time.ResultsThe cross‐sectional agreement was excellent for both abbreviated measures (all intraclass correlation coefficients [ICCs] >0.98). When measuring change over time, both the GMFM‐66‐IS and the GMFM‐66‐B&C showed good agreement for children with bilateral CP (ICCs >0.9). However, the GMFM‐66‐IS assessed change over 1 year more accurately than the GMFM‐66‐B&C in children with unilateral CP (ICC=0.89 vs ICC=0.58; 95% confidence intervals do not overlap).InterpretationBoth approaches for estimating GMFM‐66 scores are accurate at a single point in time. If the primary goal of assessment is to measure change, the full GMFM‐66 should still be regarded as the criterion standard. The GMFM‐66‐IS should be the preferred shortened measure for children with unilateral CP.

Background. Developmental coordination disorder (DCD) is a common, chronic health condition that is poorly recognized and understood in school settings. Without appropriate support, children with DCD are at increased risk of depression, decreased fitness, and obesity. Evidence shows that occupational therapy intervention needs to shift from remediation of impairment to chronic disease management. Purpose. This paper describes Partnering for Change (P4C), an innovative, empirically derived school health service delivery model for children with DCD. Key Issues. The model emphasizes the partnership of the occupational therapist with educators and parents to change the life and daily environment of a child. The P4C partnership focuses on capacity building through collaboration and coaching in context. The model uses a tiered approach which includes whole class instruction, dynamic performance analysis, and monitoring response to intervention. Implications. P4C is a model that responds to the needs of this population, addresses issues identified in research, and provides a continuum of services designed to build capacity.

The United Kingdom Medical Research Council recommends use of a conceptual framework for designing and testing complex therapeutic interventions. Partnering for Change (P4C) is an innovative school-based intervention for children with Developmental Coordination Disorder (DCD) that was developed by an interdisciplinary team who were guided by this framework. The goals of P4C are to facilitate earlier identification, build capacity of educators and parents to manage DCD, and improve children's participation in school and at home. Eight occupational therapists worked in school settings during the 2009-2010 school year. Their mandate was to build capacity through collaboration and coaching with the school becoming the "client", rather than any individual student. Over 2600 students and 160 teachers in 11 elementary schools received service during the project. Results from questionnaires and individual interviews indicated that this model was highly successful in increasing knowledge and capacity. P4C intervention holds promise for transforming service delivery in schools. (C) 2012 Elsevier Ltd. All rights reserved.

The purpose of this study was to describe the motor, attention and intellectual characteristics of a population-based sample of children first screened for motor impairment and to discuss the recruitment and identification methods employed. A two stage cross-sectional, school-based survey was conducted to screen for children with motor coordination difficulties and to identify children with an existing diagnosis of attention deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD). The identified children, and a random sample of typically developing children, were assessed to confirm or rule out the presence of developmental coordination disorder (DCD). Six thousand four hundred and seventy five children were invited to participate; 2943 children, with parental consent, completed the initial screening process. Two hundred eighty four children with possible motor impairment were identified. The parents of 113 children consented to a full assessment. Sixty eight children of the 113 children met diagnostic criteria for DCD, and 26 also had ADHD. Twenty eight of the 55 children who screened in with a diagnosis of ADHD were subsequently found to have DCD. The total number of children with confirmed characteristics of DCD was reduced after application of DCD diagnostic criteria. This study differs from others with regard to the additional screening for children with ADHD/ADD. The second stage assessment notably increased the number of children identified with both ADHD and DCD.

AIM:To describe the development of context therapy, a new intervention approach designed for a randomized controlled trial. METHOD:Therapists were trained to change task and environmental factors to achieve parent-identified functional goals for children with cerebral palsy. Therapists did not provide any remediation strategies to change the abilities of the child. Theoretical constructs were developed using dynamic systems theory and the principles of family-centered care. A primary therapist model was used. A three-step intervention strategy was developed. RESULTS:Therapists adhered to the treatment protocol. Parents participated in the development of both functional goals and intervention strategies. INTERPRETATION:A therapy approach focusing on changing the task and the environment rather than children's impairments can be a viable treatment strategy and merits further investigation. The detailed description of the context therapy approach allows replication by both researchers and clinicians. Such intervention descriptions are an important methodological consideration in rehabilitation research.

Purpose. Despite widespread educational and promotional efforts, paediatric rehabilitation therapists still do not systematically or routinely use outcome measures.Method. A review of contextual and psychosocial factors affecting therapists' use of outcome measures was performed, incorporating information from past studies of barriers to therapists' use of measures and more recent information about measure use, knowledge brokering and expert practice.Results. This cumulative and contextual overview provided insights into how many therapists may approach practice. Therapists' beliefs in the importance of establishing effective relationships may lead them to place less value on formal measurement, to adopt a less rigorous and more pragmatic approach to ascertaining whether outcomes are achieved, and to avoid measures that may show little improvement.Conclusions. A relational goal-oriented approach to practice is proposed in which therapists adopt a broader facilitative and educational role with families about the importance of the measurement process.

The purpose of this cross-sectional study was to determine what participation issues are important to adolescents with cerebral palsy (CP). Two hundred and three adolescents with CP (mean age 16.0 ± 1.8 years) were assessed using the Canadian Occupational Performance Measure (COPM). This was done through semistructured interviews by trained physical and occupational therapists. Adolescents responded either directly (n = 144) or through a parent or a caregiver (n = 59) if they were unable to communicate. Issues were extracted from completed questionnaires and coded under three COPM categories (self-care, productivity, and leisure) and 16 subcategories. There was no association between the total number of issues identified and gender (p = .99), age (p = .88), type of respondent (adolescents versus parent) (p = .27), Gross Motor Function Classification System (GMFCS) level (p = .93), or 66-item Gross Motor Function Measure (GMFM-66) score (p = .45). The issues identified most frequently were related to active leisure (identified by 57% of participants), mobility (55%), school (48%), and socialization (44%). Interventions aimed at improving participation among adolescents with physical disabilities, such as CP, should be directed towards these four key areas. Health care professionals should also recognize and consider the interaction of person and environment when addressing issues related to participation.

Introduction: Administratorsmust balance the demands of delivering therapy services with the need to provide staff with educational opportunities promoting evidence-based practice. Increasingly, the use of multifaceted, interactive knowledge translation strategies, such as knowledge brokering, is suggested as an effective way to encourage clinician behavior changes and implement new knowledge. The purpose of this qualitative study is to describe administrators' perceptions of the successes and challenges in using a knowledge broker (KB) to promote the use of evidence-based measures of motor function for children with cerebral palsy.Methods: Administrators from 27 pediatric facilities completed a semi-structured telephone interview following 6 months of knowledge brokering within their organizations. Using thematic analysis, interview transcripts were reviewed to identify common themes.Results: Six interview themes were identified: "Efficient and Effective," "Stimulating Peer-to-Peer Learning Environment," " Committed and Respected Knowledge Brokers," " Sharing Beyond," " Organizational Beliefs and Values," and " The Dilemma of Moving Forward". Administrators were positive about the KB experience, acknowledging its efficiency and effectiveness. They commented on the stimulating peer-to-peer and interdisciplinary learning environment that the KB process encouraged. Administrators referred to their organizational beliefs and values when discussing their need to make priorities for limited resources, which influenced their decisions about whether to continue with a KB after the study was completed.Discussion: Although administrators were philosophically supportive of knowledge brokering, they identified funding and resource constraints and the absence of evidence of the effectiveness of knowledge brokering as major barriers to the continuation of a KB role in their facility.

This article reports on the findings of a qualitative study about the experiences and perceptions of adolescents with cerebral palsy (CP) in relation to social participation. A phenomenological approach was used to interview 10 adolescents with CP, 17 to 20 years of age, selected using purposeful sampling. An iterative process of data collection and analysis resulted in four themes about social participation. The themes of experience, barriers, and supports, and tradeoffs supported the current view of participation as a dynamic interaction between person and environment. The fourth theme of making choices described the unique challenges facing adolescents with CP in terms of deciding what was most important and meaningful to them now and in their future. Health care professionals can support adolescents as they develop the capacity to make their own decisions during the transition to adult living by ensuring that assessments and interventions address social participation.

Background The use of knowledge brokers (KBs) has been recommended as a mechanism to facilitate the use of research evidence in clinical practice. However, little has been written regarding the practical implementation of the KB role. Objectives This article (1) describes the brokering activities of 24 pediatric physical therapist KBs (in Ontario, Alberta, and British Columbia, Canada), and (2) reports KBs' perceptions of the utility of their role and their experiences with the brokering process. Design A mixed-methods research design was used in this investigation, which was part of a larger knowledge translation (KT) study that demonstrated the effectiveness of using KBs to implement a group of evidence-based measurement tools into practice. Methods The KBs completed weekly activity logs, which were summarized and described. Semi-structured telephone interviews with KBs were analyzed qualitatively to provide insight into their perceptions of their role and the brokering process. Major interview themes were identified and verified through member checking. Results Brokering activities varied considerably as KBs adapted to meet the needs of their colleagues. The KBs indicated that they highly valued the connection to the research community and spoke of the enthusiastic engagement of their physical therapist colleagues (and others in their organization) in the brokering process. They discussed the importance of understanding the practice context and organizational factors that could affect knowledge transfer. The KBs spoke of the need to dedicate time for the role and had a strong sense of the supports needed to implement a KB role in future. Conclusions Considerable variation in brokering activities was demonstrated across KB participants. The KBs perceived their role as useful and indicated that organizational commitment is crucial to the success of this KT strategy.