Background The F-words for Child Development (Functioning, Family, Fitness, Fun, Friendships and Future) offer a holistic, strengths-based and family-centred approach to child development, rooted in the World Health Organization's International Classification of Functioning, Disability and Health. Interest in the F-words has grown significantly among families, health care providers, educators and researchers, creating the need for accessible and scalable training to support dissemination and implementation efforts.Methods A self-paced online F-words Foundations Course was co-developed by families, health care providers, educators and researchers. The course consists of five 1-h modules covering the F-words approach, personal stories, goal-setting and practical strategies for integrating the F-words into daily life and practice. This study evaluated the acceptability, feasibility, usability and utility of the course through an online survey that included Likert-scaled and open-ended questions. Quantitative data were analysed using descriptive statistics, and qualitative data were analysed through content analysis.Results Fifty-five participants, including families, health care providers and educators from Ontario, completed an online survey assessing their experience. Findings were positive, with participants rating the course as useful in understanding the F-words (85%), accessible and easy to engage with (91%) and valuable in helping them achieve their learning goals (85%). Participants valued the multimedia components, particularly videos featuring individuals with lived experience, and appreciated the course's family-centred perspective. Suggested improvements included increasing interactivity (e.g., use of discussion boards and synchronous group sessions) and shortening the length or removing repetition in course content.Conclusion The F-words Foundations Course is a free, accessible and online training tool that effectively supports increasing knowledge, awareness and use of the F-words in life and practice. Future directions include expanding course offerings for young individuals and exploring facilitated formats to enhance engagement.

Aim The aim of this study is to describe and compare areas of concern for caregivers of children and adolescents with Down syndrome across ages and explore how these areas impact their ability to participate in daily activities.Methods One hundred and seventeen caregivers of children and adolescents with Down syndrome, aged 0-18, participated and completed the About My Child questionnaire. Descriptive analyses of data from the caregivers were carried out. Individual item scores and the mean scores, standard deviations, median and confidence interval of the total Concern and Impact scores were calculated. Item analyses were carried out across age groups (Kruskal-Wallis test) and between children and adolescent groups (Mann-Whitney Test), aiming to explore concerns and impacts at different ages.Results The lowest mean concern score for an age group was 9.27, and the highest was 12.67, with possible scores from 0 to 19. The lowest mean impact score for an age group was 2.80, and the highest was 3.25, with possible scores from 0 to 4. The items with the highest frequency of concern for most age groups were communication, participation in school and community and behaviour. The biggest impacts on participation were reported for the items concerning the use of arms and hands, sleep and hearing. No differences were found across age groups.Interpretation This study found that caregivers of children and adolescents with Down syndrome have concerns about their child that, in total, do not change throughout life.

Background ENabling VISions And Growing Expectations (ENVISAGE) is a programme focused on strengths-based approaches to child development, empowering parents of children with neurodevelopmental disabilities. The established ENVISAGE-Families and ENVISAGE-Service Providers programmes have been evaluated through several studies, demonstrating positive impacts. Building on the success of these programmes, an 'integrated' version was co-developed and co-delivered to both parents and service providers through five online weekly workshops, encouraging both groups to learn with and from each other.Methods A pilot study was conducted to evaluate ENVISAGE-Integrated. The programme was delivered in five cohorts of five to eight participants each, co-facilitated by a parent and service provider from the ENVISAGE research team. Participants completed five weekly workshop surveys and a semi-structured interview after the programme. Quantitative data from surveys were analysed using descriptive statistics and Mann-Whitney tests. Qualitative data from semi-structured interviews were explored using thematic analysis.Results Nineteen service providers and 11 parents of children with neurodevelopmental disabilities participated in the programme at one children's treatment centre. Survey responses indicated high levels of agreement regarding comfort, perceived learning and meaningfulness of participating with parents and service providers. Thematic analysis generated three themes that reflected the perceptions and experiences of both parents and service providers: (i) reaffirmation of the importance of collaborating and relationship-building; (ii) expansion of understanding how to work together; and (iii) appreciation for each other's realities as people first and foremost. A fourth theme relevant to parents was a sense of connection and support from other parents' shared experiences. A fifth theme relevant to service providers was validation of clinical practice through alignment of content with parent values.Conclusions ENVISAGE-Integrated offered benefits by facilitating collaborative learning between parents and service providers. Although findings are promising, ENVISAGE-Integrated requires thoughtful recruitment and balanced group composition to ensure the programme benefits both parents and service providers.

IntroductionThis paper reports on the first two phases of a three-phase project to develop and evaluate an "integrated" iteration of ENabling VISions And Growing Expectations (ENVISAGE). ENVISAGE is a validated online 5-week program grounded in strengths-based and family-centred approaches to child and family development in the context of neurodevelopmental disability. The two phases included (i) partnership formation and collaborative adaptation of the ENVISAGE programs for families (ENVISAGE-Families) and for service providers (ENVISAGE-SP) to create an "integrated" approach; and (ii) conduction of a feasibility study.MethodsENVISAGE-Integrated was co-developed through an iterative process of revising and combining the original ENVISAGE programs (for families and for service providers). The Framework for Reporting Adaptations and Modification-Expanded (FRAME) was used to report modifications. The feasibility study included 12 participants (7 service providers and 5 parents) from a children's treatment centre. Participants completed a demographic questionnaire and surveys after each workshop, including open-ended and 5-point Likert-scaled questions about their experiences of the program. All data were analyzed descriptively.ResultsProgram modifications were undertaken to ensure relevance to both service providers and parents and to preserve the core ENVISAGE concepts. Key modifications included (i) incorporating weekly icebreaker activities and (ii) tailoring current and creating additional scenarios to prompt discussion and apply concepts. Participants found the integrated format was valuable, meaningful, and relevant. Challenges included recruiting participants and scheduling synchronous group discussions.ConclusionParticipants' feedback informed two program adaptations: (i) allotting more time to apply concepts to scenarios during group discussions and (ii) supporting the use of the platform's discussion board. The findings from the feasibility study justify the ongoing development and evaluation of program outcomes on both service providers and parents.

In the twenty-first century, granting organizations and journals increasingly expect health services research to include the active participation and voices of people with lived experience in studies relevant to their lives. This paper reports the 30-year history of engagement between CanChild Centre for Childhood-Onset Disability Research and families of children with neurodisabilities. We offer a brief background history of how these activities began and report on several programmes of research, knowledge sharing, and implementation that have benefitted enormously from the relationships with families and the insights they have provided on virtually every dimension of our work. We also briefly report on some of our recent formal and informal engagements with young people with lived experience, an aspect of our work that is now being more actively developed. We hope that this overview of one centre’s experiences and lessons learned from active partnerships with “the people who know” will be of value to others.

Conceptual frameworks inform and advance clinical practice, research, and education. The “F-words for child development” is a child/youth/family friendly model that embeds the words fitness, functioning, family, friends, fun, and future into the International Classification of Functioning, Disability and Health (ICF). This perspectives paper explores how the concepts and use of the F-words for child development are conducive to the practice of pediatric oncology rehabilitation and promotion of quality of life of children and their families. Pediatric oncology rehabilitation is explored in the context of the ICF and F-words through a review of relevant literature, clinical expertise, and child/youth/family perspectives. The F-words framework is congruent with recognized rehabilitation strategies, preferences, and best practices during and after treatment for cancer in children and youth. The concepts can be used to promote the engagement, health, well-being, and quality of life of children/youth and their families.

Background Cerebral Palsy has several characteristics that can influence gross motor performance, the activities and participation of children and adolescents with this health condition. Knowing that family-centered assessment instruments are essential in the assessment of these patients, the Gross Motor Function – Family Report (GMF-FR) was developed, which is a self-reported instrument, easy to apply clinically and that assesses gross motor performance for this population. Objectives Analyze GMF-FR measurement properties. Methods Methodological study. The GMF-FR was applied remotely with parents to validate measurement properties. The test-retest reliability was analyzed using the Intraclass Correlation Coefficient (ICC), for which a period of 7-30 days was respected: homogeneity by Cronbach's alpha. The discriminative validity between the GMF-FR and the Gross Motor Function Classification System (GMFCS) was observed by Spearman-rho correlation (rho) and One-way ANOVA, with post-hoc Tukey. A significance level of α=0.05 was considered. Results 146 children and adolescents with a mean age of 6.8 years (3,437) participated, covering all levels of functioning measured by the Gross Motor Function Classification System (GMFCS), with 50% level I, II and III and 50% level IV and V. Of these participants, 66.4% had bilateral impairment and 75.3% used some assistive technology. The GMF-FR was preferably answered by mothers (90.4%). Respondents had an average age of 37.3 years (SD=XX) and 52.7% had access to higher education. High homogeneity (α=0.99) and excellent reliability (ICC=0.99; 0.98≤95%CI≥0.99) were observed. The GMF-FR showed a strong negative correlation with the GMFCS (rho=-0.92p<0.001) and was able to discriminate gross motor performance between all GMFCS levels (Between Level I and II p<0.015; and between all other levels p<0.001). Conclusion The GMF-FR is a valid and reliable instrument to assess gross motor performance and capable of discriminating by level of GMFCS the children and adolescents with CP. Implications The GMF-FR is a new reliable instrument for assessing the gross motor performance of children and adolescents with CP, in addition to being accessible and easy to apply clinically, directly impacting the practice of health professionals during the assessment of key goals for treatment of children and adolescents with CP

ResumoObjetivoRefinar o Relato Familiar da Motricidade Grossa (GM‐FR) utilizando a contribuição dos pais e avaliar as suas propriedades psicométricas.MétodoNeste estudo metodológico, 12 pais de crianças e adolescentes com paralisia cerebral (PC), com idade entre 2 e 18 anos, classificados em todos os níveis do Sistema de Classificação da Função Motora Grossa (GMFCS), foram entrevistados sobre sua experiência na conclusão do GM‐FR (validade de conteúdo). O feedback dos pais foi usado para refinar o instrumento que foi então preenchida por 146 famílias para avaliar a consistência interna, e a validade discriminativa e concorrente. 46 pais completaram o GM‐FR novamente, 7 a 30 dias depois, para avaliar a confiabilidade teste‐reteste.ResultadosA pontuação do GM‐FR, as imagens, as descrições e o número total de itens foram revisados com base no feedback dos pais. O GM‐FR versão 2.0 demonstrou alta consistência interna (α de Cronbach = 0,99), ausência de efeitos piso/teto e excelente confiabilidade teste‐reteste (coeficiente de correlação intraclasse = 0,99). Os escores do GM‐FR discriminaram entre os níveis do GMFCS (p < 0,05) e foram fortemente correlacionados negativamente com o nível do GMFCS (r = −0,92; p < 0,001). Os escores do GM‐FR correlacionaram‐se de forma positiva e forte com o Gross Motor Function Measure‐66 (r = 0,94; p < 0,001) e com o domínio de mobilidade do Pediatric Evaluation of Disability Inventory – Computer Adaptive Test (r = 0,93; p < 0,001).InterpretaçãoA participação ativa das famílias no desenvolvimento do GM‐FR facilitou a criação de um instrumento amigável à família. Este estudo fornece fortes evidências de confiabilidade e validade para apoiar o uso do GM‐FR na prática clínica e em pesquisas para avaliar o desempenho motor grosso de crianças e adolescentes com PC.

Aim: To refine the Gross Motor Family Report (GM-FR) using parents' input and to evaluate its psychometric properties. Method: In this measurement study, 12 parents of children and adolescents with cerebral palsy (CP), aged 2 to 18 years, classified in all levels of the Gross Motor Function Classification System (GMFCS), were interviewed about their experience completing the GM-FR (content validity). Parents' feedback was used to refine the measure which was then completed by 146 families to evaluate internal consistency, and discriminative and concurrent validity. Forty-six parents completed the GM-FR again, 7 to 30 days later, to evaluate test-retest reliability. Results: GM-FR scoring, pictures, descriptions, and the total number of items were revised based on parents' feedback. The GM-FR version 2.0 demonstrated high internal consistency (Cronbach's alpha = 0.99), no floor/ceiling effects, and excellent test-retest reliability (intraclass correlation coefficient = 0.99). GM-FR scores discriminated between GMFCS levels (p < 0.05) and were strongly negatively correlated with GMFCS level (r = -0.92; p < 0.001). GM-FR scores correlated positively and strongly with the Gross Motor Function Measure-66 (r = 0.94; p < 0.001) and the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test mobility domain (r = 0.93; p < 0.001). Interpretation: Active participation of families in the GM-FR's development facilitated creation of a family-friendly instrument. This study provides strong evidence of reliability and validity to support GM-FR use in clinical practice and research for assessing gross motor performance of children and adolescents with CP.

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. 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. 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. 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.

Purpose: Describe scootering as a physical therapy intervention for children/adolescents with mobility limitations within the "F-Words for Child Development" (fitness, function, family, friends, fun, and future) and through motion analysis. Methods: Perspectives of scootering were explored using the holistic "F-words for Child Development" recommendations for pediatric rehabilitation and through 3-dimensional instrumented motion analysis of children/adolescents with cerebral palsy and children/adolescents with typical development. Results: Scootering was consistent with the F-words tenets for rehabilitative best practice. Many of the motion characteristics of scootering reflected desirable exercise and gait attributes relevant to children/adolescents with cerebral palsy. Conclusions: Scootering is a feasible, functional, and fun activity that has the potential to address many aspects of fitness, function, and gait; meet the needs of families; and provide opportunities for interaction with friends. It is a physical therapy intervention that has the potential to contribute to future health and well-being of children with disabilities. Video Abstract: For more insights from the authors, see Supplemental Digital Content 1, available at: http://links.lww.com/PPT/A331. .

OBJECTIVE:To identify existing outcome measurement instruments (OMIs) assessing risk factors for cardiometabolic disease in adolescents and adults with cerebral palsy (CP) reported on in the literature or used in the field. DATA SOURCES:The COnsensus-based Standards for the selection of health Measurement Instruments database of systematic reviews and 4 electronic databases (Embase, MEDLINE/Ovid, MEDLINE/Pubmed, PsychINFO) were searched up to June 19, 2017, that yielded 2594 articles. Experts in the field were consulted to identify any additional OMIs. STUDY SELECTION:Two reviewers independently applied inclusion criteria to select eligible studies using or evaluating measurement properties of OMIs assessing 1 of 8 outcomes: cardiorespiratory endurance, body size, body composition, physical behavior, sleep, nutrition, blood pressure, and blood lipids and glucose. Studies with an experimental or observational design including ≥10 adolescents or adults with CP were included. DATA EXTRACTION:One reviewer extracted data that were summarized for study and sample characteristics, outcomes, OMIs used, and if applicable data on measurement properties. Two reviewers rated the methodological quality and the quality of the OMIs. Feasibility for clinical practice and research was rated by experts in the field. DATA SYNTHESIS:Ninety OMIs were identified from 56 included articles and by the experts. Seventy OMIs pertained to cardiorespiratory endurance, body size, body composition, and physical behavior, whereas only 5 were identified for sleep and nutrition. Overall synthesis revealed that there is moderate to poor evidence for good quality of OMIs in this population. Based on feasibility for clinical practice, experts agreed on a single OMI per outcome (and 2 for cardiorespiratory endurance) to be included in a core set. CONCLUSION:Despite the range of available OMIs to assess risk factors for cardiometabolic disease in adolescents and adults with CP, evidence of good quality is often lacking. Nonetheless, a preliminary core set of 9 OMIs was systematically developed.

Background: Children/youth with chemotherapy induced peripheral neuropathy (CIPN) experience many impairments, activity limitations, and participation restrictions. Objective: The objective of this study was to describe the use and feasibility of selected multi-dimensional outcome measures of functioning, disability, and health in children/youth with CIPN following treatment for acute lymphoblastic leukemia. Methods: A selection of clinician evaluated and patient reported outcome measures encompassing all dimensions of the International Classification of Functioning, Disability and Health was collected from seventeen children/youth with CIPN within a study of 3D instrumented motion analysis. Measures included the pediatric modified Total Neuropathy Scale, ankle strength and range of motion, six-minute walk test, Edinburgh Visual Gait Score, Oxford Ankle and Foot Questionnaire, Bruininks-Oseretsky Test of Motor Proficiency running speed and agility subtest, and Pediatric Outcomes Data Collection Instrument Transfers and Basic Mobility, Sports/Physical Functioning, and Pain/Comfort scales. Results: The measures were shown to be feasible and were able to demonstrate differences compared to normative data. They showed variability within the group of children/youth with CIPN except for the running speed and agility test, which had a floor effect. The Edinburgh Visual Gait Scores correlated significantly (r = −0.668, p <0.001) with the Gait Deviation Index, a summary score of kinematic gait data from the 3D motion analysis study. Conclusion: These measures can contribute clinical practice, research, and the development of core outcome set registries.

This commentary is on the systematic review by Tedroff et al. on pages 554–562 of this issue.

Sensory changes and muscle weakness attributable to chemotherapy induced peripheral neuropathy (CIPN) are possible sequela of treatment for acute lymphoblastic leukemia (ALL) which can result in long-lasting difficulties with walking. The purpose of this study was to describe the gait characteristics of children and youth treated for ALL who exhibited CIPN compared to typically developing children and youth using 3D motion analyses and electromyography (EMG). Temporal-spatial, kinematic, kinetic, and electromyographic (EMG) data were collected from 17 youth (mean age 11.2 (5.7) years) with CIPN and compared to data from 10 typically developing youth. Although the gait of the CIPN group was heterogeneous between and within participants, the CIPN group demonstrated primary deviations attributable to CIPN and secondary deviations, both passive effects and active compensatory mechanisms. They had significantly less peak hip extension, knee flexion in loading, dorsiflexion at initial contact, plantarflexion at pre-swing, and dorsiflexion in swing, shorter step lengths, and lower ankle moments and powers than the comparison participants. EMG data from the gastrocnemius and tibialis anterior muscles showed excessive co-activation and atypical firing including out of phase firing of the gastrocnemius in late swing and loading and premature firing of the tibialis anterior in terminal stance. This study, using 3D motion analysis and EMG in youth with CIPN, showed variability in gait suggesting that clinical decision-making should be based on a detailed understanding of individual impairments and associated gait abnormalities.

Rehabilitation and exercise are essential components of comprehensive cancer care as the disease and its treatments present many challenges to functional independence, health, and quality of life. For adolescent and young adult (AYA) these challenges are compounded by the complex developmental transitions that take place during this time of life. Therefore, cancer rehabilitation practices must be linked with an understanding of the potential interruptions to the typical physical and psychosocial trajectories inherent to adolescence and young adulthood. Rehabilitation focuses on the prevention or alleviation of physiological and psychosocial impairments, the maximization of function, the promotion of participation in age-appropriate activities, and addressing environmental barriers. Clinical practice is informed by a growing body of research evidence which is integrated with general principles of rehabilitation and theory-based knowledge regarding physiology, psychology, and development. The overall goal of a rehabilitation program is the achievement of an independently functioning and self-sufficient individual who has a satisfying social and emotional life and is a contributing member of society within the limits of their disease and environment.

AIMS:To engage researchers and knowledge-users in six Ontario communities in knowledge translation initiatives to identify community-informed elements to guide the development of an optimal physical activity program for youth with cerebral palsy (CP) and to support research efforts. METHODS:The project included three iterative steps, i.e., an environmental scan of five communities, six regional planning meetings, and a member-checking survey, followed by a Delphi survey to reach consensus on the elements deemed most important. RESULTS:Twenty-four elements were identified to include in programs promoting physical activity in youth with CP, which were organized in five categories: raise awareness of the options and opportunities (n = 4); pique interest and motivate youth to become and stay active (n = 9); ensure community programs are ready for youth with a disability (n = 2); be fit, fit in, and finding the best fit (n = 5); and explore the layers of physical activity and how they interact (n = 4). CONCLUSIONS:The 24 elements established characterize the key concepts that families and community stakeholders value when developing physical activity programs for youth with CP. When incorporated into clinical practice, each of the elements may be used to evaluate key aspects of outcome for individuals with CP.

Purpose: To describe motor function and participation in, barriers to, and preferences for physical activity (PA) in adolescents during and after treatment of cancer and to discuss PA promotion in the context of developmental and cancer transitions. Method: A cross-sectional survey study used the Transfer and Basic Mobility and Sports/Physical Functioning self-report and parent-report scales of the Pediatric Outcomes Data Collection Instrument (PODCI) and questions about PA participation and preferences to collect information from 80 adolescents and 63 parents. Results: PODCI scores for adolescents receiving treatment were more variable and significantly lower than those of adolescents who had been off treatment for more than 2 years. Fatigue, pain, general health, and doctor's orders were frequently identified as barriers to PA for adolescents receiving treatment. Many did not achieve recommended levels of PA. The adolescents expressed preferences for being active with friends and family, at home or in school, in the afternoon or evening, and through daily recreational and sports activities typical of teenagers. Conclusions: Physical abilities and participation in and barriers to PA vary across the cancer journey. Interventions should be sensitive to variability and acknowledge individual preferences and environments throughout the trajectories and transitions of cancer treatment and youth development to achieve lifelong healthy lifestyles.