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IntroductionChildren and youth with disabilities and special healthcare needs, and their families, have been uniquely affected by the COVID-19 pandemic. However, the voices of children themselves are still not well represented in the existing literature.MethodsThis qualitative descriptive study used a combination of visual methods and interviews to learn about the experiences of Canadian children with disabilities (n=18) and their parents (n=14) during the COVID pandemic and into the post-pandemic period. Data collection was carried out between January and July 2023. The aim was to identify the supports and services children and families need at present and moving forward.ResultsFamilies’ pandemic experiences were complex and nuanced. For many, the pandemic complicated and disrupted everyday activities and supports. These disruptions were largely buffered by parents. However, some families also identified unexpected benefits. Key themes pertaining to present and future needs included the need for services that are flexible; consistent; conducive to relationship-building; comprehensive; coordinated across sectors; and designed to support the needs of the whole family.DiscussionImplications for policy and practice are outlined.

Aim: To compare caregiver-reported current and desired home participation of infants with and without biological risk in the first year of life., Method: Observational, cross-sectional and comparative study. Caregivers of 48 infants with (mean corrected age = 5.6(±2.3) months) and 32 without (mean corrected age = 5.8(±1.9) months) biological risk completed the Young Children's Participation and Environment Measure home section. Caregivers reported on their infant's current participation (frequency and involvement) in 13 activities within the domains of basic care routines, household chores, interactive and organized play, and socializing with friends and family, as well as their desire for change(s) in their infant's home participation. We compared groups using comparative tests (Bonferroni's correction for multiple comparisons; p  < 0.0125)., Results: Infants with biological risk participated less frequently in the domain household chores ( U  = 383.000; p  < 0.001); and were less involved in the domain household chores ( U  = 407.000; p  < 0.001). No significant group differences were found in desire for change., Conclusion: Results suggest that home participation restriction can be identified for infants with biological risk in one out of four domains, which may allow health professionals to develop strategies to intervene early in the participation of children at risk in this specific area of household chores.

Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

At the ICF Research Institute (at MSH Medical School Hamburg) multiprofessional experts collaborate on various research projects with a focus on bio-psycho-social health and education. Initially, the main goal was monitoring and evaluating the implementation of the International Classification of Functioning, Disability and Health (ICF) in clinical practice. Over time and based on the initial findings, the research group started developing new approaches to support training and education of health professionals in the use of the ICF. As a result, substantial changes have recently been made in the curriculum and structure of several courses to improve and expand interprofessional teaching at the MSH Medical School Hamburg (MSH). Furthermore, creative didactic approaches in combination with interprofessional education have been developed., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The author(s) OK and LS declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision., (© 2024 Simon, Gölz, Schenk, Bührmann, Kauff, Kraus de Camargo, Snyman, Lüers and Wulfhorst.)

Aim: To describe current home participation (frequency, involvement) and caregiver's desire for change in home participation of children and adolescents with Down syndrome, as well as home environmental factors, and to explore the associations of personal and environmental factors with current participation and caregiver's desire for change., Method: Eighty-two caregivers (mean age = 45 years 10 months) of children and adolescents with Down syndrome (mean age = 10 years 7 months) were surveyed about the child's home participation and environmental factors using the Participation and Environment Measure-Children and Youth. Furthermore, children's personal and environmental factors were collected. Results are reported using descriptive analysis and correlations (Spearman's rank correlation coefficients and Mann-Whitney U test) to describe the relationship between current participation and caregiver's desire for change, with personal and environmental factors as ordinal and nominal variables respectively (p < 0.05)., Results: Children's participation was highest with regard to personal care management and lowest with regard to school-related activities. Most caregivers desired change in homework and household chores. Greater frequency was associated with male sex, caregiver less rigorous social distancing due to the COVID-19 pandemic, and children receiving therapies. Greater involvement was associated with younger age in children and higher environmental support. Older age in children was associated with caregiver's greater desire for change., Interpretation: Personal and environmental factors correlated with participation in specific ways. Creative strategies to promote participation that consider caregiver's wishes should be undertaken., (© 2024 Mac Keith Press.)

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., Competing Interests: Declaration of Competing Interest The authors have no conflict of interest to report., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

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.

Background: According to a biopsychosocial approach to health and disability, participation at home and functional skills are important components of the functioning. Therefore, knowledge about interactions between these components allows for targeting specific interventions., Objective: This study investigated whether participation opportunities (frequency and involvement) for children/adolescents with Down syndrome (DS) in a realistic environment at their own home are associated with the functional skills related to the domains of Daily Activities, Mobility, Social/Cognitive and Responsibility., Methods: This was an observational study. Forty-eight children/adolescents with DS participated (mean age: 10.73 ± 3.43; n = 27 females). Participants were evaluated using the Participation and Environment Measure for Children and Youth (PEM-CY) home environment setting (raw frequency and engagement scores) and Pediatric Evaluation of Disability Inventory speedy version (PEDI-CAT-SV) (continuous score)., Results: Significant and positive correlations were found between the frequency of participation at home with Daily Activities (ro = 0.320), Social/Cognitive (ro = 0.423) and Responsibility (ro = 0.455). For involvement, significant and positive correlations were found with Daily Activities (ro = 0.297), Social/Cognitive (ro = 0.380) and Responsibility (ro = 0.380). For the PEDI-CAT-SV Mobility, no significant correlation was found., Conclusions: Higher frequency and involvement of participation at home are associated with greater functional skills assessed, except for Mobility. This study provided pioneering insights about the relationships between the level of home participation and functional skills in DS, generating evidence that could guide approaches to participation-focused intervention., (© 2023 John Wiley & Sons Ltd.)

Healthcare has become more complex in recent years. Such complexity can best be addressed by interprofessional teams. We argue that to ensure successful communication and cooperation in interprofessional teams, it is important to establish interprofessional education in health-related study programs. More precisely, we argue that students in health-related programs need to develop interprofessional competencies and a common language, experience interprofessional contact, build inclusive identities and establish beliefs in the benefit of interprofessional diversity. We give examples how these goals can be implemented in interprofessional education. We also discuss challenges and future avenues for respective research healthcare professionals., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Kauff, Bührmann, Gölz, Simon, Lüers, van Kampen, Kraus de Camargo, Snyman and Wulfhorst.)

Background: Social support and Quality of life (QoL) are important aspects of life and should be explored during the specific scenario of the pandemic., Aims: (i) to compare the perceived social support (PSS) in caregivers and the domains of QoL of the caregiver and the child with developmental disabilities (DD) and typical development (TD); (ii) to verify the existence of the association, in each group, between the PSS, and the domain of QoL of the caregiver and the child., Methods and Procedures: 52 caregivers of children with DD and 34 with TD participated remotely. We assessed PSS (Social Support Scale), children's QoL (PedsQL-4.0-parent proxy) and caregivers' QoL (PedsQL-Family Impact Module). The groups were compared for the outcomes using the Mann-Whitney test, and Spearman's test evaluated the correlation between the PSS and the QoL (child and caregiver) in each of the groups., Outcomes and Results: There was no difference between groups for PSS. Children with DD presented lower values in PedsQL total, psychosocial health, physical health, social activities, and school activity. Caregivers of children with TD presented lower values in PedsQL family total, physical capacity, emotional aspect, social aspect, daily activities, and higher value in communication. In the DD group, we found a positive relationship between PSS with child: Psychosocial Health (r = 0.350) and Emotional Aspect (r = 0.380), and with family: Total (r = 0.562), Physical Capacity (r = 0.402), Emotional Aspect (r = 0.492), Social Aspect (r = 0.606), Communication (r = 0.535), Concern (r = 0.303), Daily Activities (r = 0.394) and Family Relationships (r = 0.369). In the TD group, we found that PSS was positively associated with Family: Social Aspect (r = 0.472) and Communication (r = 0.431)., Conclusions and Implications: During the COVID-19 pandemic, despite both groups presenting similar PSS, there are important differences in QoL between them. For both groups, greater levels of perceived social support are associated with greater caregiver-reported in some domains of the child's and caregiver's QoL. These associations are more numerous, especially for the families of children with DD. This study provides a unique view into the relationships between perceived social support and QoL during the "natural experiment" of living through a pandemic.

Objectives: To identify the perception of the availability of community support and the support needs of autistic people and people with disabilities, from their own perspectives and from those of their caregivers at the time of the COVID-19 pandemic in Quebec, to assess the association between the available support and the perceived stress levels to evaluate the role of perceived social support as a potential buffer of this association., Methods: A total of 315 respondents participated in a 4-min online survey across the province of Quebec by snowball sampling. Community support was defined as availability of adapted healthcare, adapted information, adapted educational services and community services., Results: The community support and services during the COVID-19 pandemic were not available or were not sufficiently adapted to their needs. About 40% of autistic people or people with disabilities and 44% of their caregivers perceived their days as being quite stressful or extremely stressful. This is twice the rate of that of the general population in non-pandemic time. Nevertheless, social supports can play a mediating role in attenuating the effects of the absence of adapted services on the stress level of this vulnerable population., Conclusion: The non-availability of adapted services was related to an increase in the stress level in this population. Our study adds that other than social support, adapted healthcare/tele-healthcare and in-home support services could reduce the impact of the pandemic on the stress level of autistic people and people with disabilities. Adapted educational services and necessary equipment for online education for people without resources could reduce the impact on the stress level in caregivers. People with disabilities and their caregivers are one of the most vulnerable groups in our society. Public health measures of containment and mitigation need to consider more their specific needs., (© 2022. The Author(s) under exclusive license to The Canadian Public Health Association.)

Background: Children with disability face long wait times for rehabilitation services. Before the COVID-19 pandemic, telehealth adoption was low across pediatric rehabilitation. Owing to the COVID-19 pandemic restrictions, pediatric therapists were asked to rapidly shift to telehealth, often with minimal training. To facilitate the behavior changes necessary for telehealth adoption, provision of appropriate evidence-based training and support is required. However, evidence to support the effective implementation of such training is lacking. The successful real-world implementation of a training intervention and program of support (TIPS) targeting pediatric therapists to enhance the adoption of family-centered telerehabilitation (FCT) requires the evaluation of both implementation and effectiveness., Objective: This study aimed to evaluate TIPS implementation in different pediatric rehabilitation settings and assess TIPS effectiveness, as it relates to therapists' adoption, service wait times, families' perception of service quality, and costs., Methods: This 4-year, pan-Canadian study involves managers, pediatric occupational therapists, physiotherapists, speech-language pathologists, and families from 20 sites in 8 provincial jurisdictions. It will use a multimethod, prospective, hybrid type 3 implementation-effectiveness design. An interrupted time series will assess TIPS implementation. TIPS will comprise a 1-month training intervention with self-paced learning modules and a webinar, followed by an 11-month support program, including monthly site meetings and access to a virtual community of practice. Longitudinal mixed modeling will be used to analyze indicators of therapists' adoption of and fidelity to FCT collected at 10 time points. To identify barriers and facilitators to adoption and fidelity, qualitative data will be collected during implementation and analyzed using a deductive-inductive thematic approach. To evaluate effectiveness, a quasi-experimental pretest-posttest design will use questionnaires to evaluate TIPS effectiveness at service, therapist, and family levels. Generalized linear mixed effects models will be used in data analysis. Manager, therapist, and family interviews will be conducted after implementation and analyzed using reflective thematic analysis. Finally, cost data will be gathered to calculate public system and societal costs., Results: Ethics approval has been obtained from 2 jurisdictions (February 2022 and July 2022); approval is pending in the others. In total, 20 sites have been recruited, and data collection is anticipated to start in September 2022 and is projected to be completed by September 2024. Data analysis will occur concurrently with data collection, with results disseminated throughout the study period., Conclusions: This study will generate knowledge about the effectiveness of TIPS targeting pediatric therapists to enhance FCT adoption in pediatric rehabilitation settings, identify facilitators for and barriers to adoption, and document the impact of telehealth adoption on therapists, services, and families. The study knowledge gained will refine the training intervention, enhance intervention uptake, and support the integration of telehealth as a consistent pediatric rehabilitation service option for families of children with disabilities., Trial Registration: ClinicalTrials.gov NCT05312827; https://clinicaltrials.gov/ct2/show/NCT05312827., International Registered Report Identifier (irrid): PRR1-10.2196/40218., (©Karen Hurtubise, Isabelle Gaboury, Jade Berbari, Marie-Claude Battista, Tibor Schuster, Michelle Phoenix, Peter Rosenbaum, Olaf Kraus De Camargo, Stacey Lovo, Lesley Pritchard-Wiart, Jill G Zwicker, Audrée Jeanne Beaudoin, Mélanie Morin, Thomas Poder, Marie-Pierre Gagnon, Geneviève Roch, Danielle Levac, Michel Tousignant, Heather Colquhoun, Kimberly Miller, Jennifer Churchill, Paula Robeson, Andréa Ruegg, Martine Nault, Chantal Camden. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 28.10.2022.)

The International Classification of Functioning Disability and Health (ICF) was approved in 2001 and, since then, several studies reported the increased interest about its use in different sectors. A recent overview that summarizes its applications is lacking. This study aims to provide an updated overview about 20 years of ICF application through an international online questionnaire, developed by the byline authors, and sent to each World Health Organization Collaborating Centers of the Family of International Classifications (WHO-FIC CCs). Data was collected during October 2020 and December 2021 and descriptive content analyses were used to report main results. Results show how, in most of the respondent countries represented by WHO-FIC CCs, ICF was mainly used in clinical practice, policy development and social policy, and in education areas. Despite its applications in different sectors, ICF use is not mandatory in most countries but, where used, it provides a biopsychosocial framework for policy development in health, functioning and disability. The study provides information about the needs related to ICF applications, that can be useful to organize targeted intervention plans. Furthermore, this survey methodology can be re-proposed periodically to monitor the use of the ICF in the future.

Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Objective: The day-to-day experience of families with an Autistic child may be shaped by both, child characteristics and available resources, which often are influenced by the socioeconomic context of the family. Using a socioecological approach, this study explored the quantitative associations between child autistic symptoms, family socioeconomic status, and family life. Methods: Data came from the Pediatric Autism Research Cohort-PARC Study (pilot). Parents of children with a recent diagnosis of autism completed a set of assessments, including the Autism Family Experience Questionnaire, Autism Impact Measure, and a Sociodemographic Questionnaire. A series of multiple, iterative linear regression models were constructed to ascertain quantitative associations between child autistic symptoms, socioeconomic context, and family life. Results: A total of 50 children (mean age: 76 months; SD: 9.5 months; and 84% male) with data on the variables of interest were included in the analysis. The frequency of child autistic symptoms was associated with family life outcomes ( p = 0.02 and R 2 = 24%). Once autistic symptom frequency, symptom impact, and sociodemographic variables were considered, parents of higher educational attainment reported worse family life outcomes compared to their lesser-educated counterparts. This cumulative regression model had considerable explanatory capability ( p = 0.01, R 2 = 40%). Conclusion: This study demonstrates the utility of using a socioecological approach to examine the dynamic interplay between child characteristics and family circumstances. Our findings suggest that family life for parents (of an autistic child) who have obtained higher education is reported (by the parents themselves) as less satisfactory compared to that of parents without higher education, once adjusted for the autistic symptom frequency of child, symptom impact, and income. These findings can inform the design and delivery of more family-centered care pathways during the years following a diagnosis of autism., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Koziarz, Roncadin, Kata, Duku, Cauwenbergs, Mahoney, Di Rezze, Anderson, Drmic, Eerkes, Dekker, Georgiades, Hoult, Kraus de Camargo, Ng, Rosenbaum, Mesterman, Gentles, Robertson, Bennett and Georgiades.)

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., (© 2021. The Author(s).)

Background: In the context of containment measures against the COVID-19 pandemic, the aims were to examine the impact of lockdown and school closures on childs' and adolescents' health and well-being and social inequalities in health., Methods: Literature review by searching five databases until November 2020. We included quantitative peer-reviewed studies reporting health and well-being outcomes in children (0-18 years) related to closure measures' impact due to COVID-19. A pair of authors assessed the risk of bias of included studies. A descriptive and narrative synthesis was carried out., Findings: Twenty-two studies, including high-income, middle-income and low-income countries, fulfilled our search criteria and were judged not to have an increased risk of bias. Studies from Australia, Spain and China showed an increase in depressive symptoms and decrease in life satisfaction. A decrease in physical activity and increase in unhealthy food consumption were shown in studies from two countries. There was a decrease in the number of visits to the emergency department in four countries, an increase in child mortality in Cameroon and a decrease by over 50% of immunisations administered in Pakistan. A significant drop of 39% in child protection medical examination referrals during 2020 compared with the previous years was found in the UK, a decrease in allegations of child abuse and neglect by almost one-third due to school closures in Florida, and an increase in the number of children with physical child abuse trauma was found in one centre in the USA., Interpretation: From available reports, pandemic school closure and lockdown have adverse effects on child health and well-being in the short and probably long term. We urge governments to take the negative public health consequences into account before adopting restrictive measures in childhood., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Pediatric feeding disorders (PFDs) lack a universally accepted definition. Feeding disorders require comprehensive assessment and treatment of 4 closely related, complementary domains (medical, psychosocial, and feeding skill-based systems and associated nutritional complications). Previous diagnostic paradigms have, however, typically defined feeding disorders using the lens of a single professional discipline and fail to characterize associated functional limitations that are critical to plan appropriate interventions and improve quality of life. Using the framework of the World Health Organization International Classification of Functioning, Disability, and Health, a unifying diagnostic term is proposed: "Pediatric Feeding Disorder" (PFD), defined as impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. By incorporating associated functional limitations, the proposed diagnostic criteria for PFD should enable practitioners and researchers to better characterize the needs of heterogeneous patient populations, facilitate inclusion of all relevant disciplines in treatment planning, and promote the use of common, precise, terminology necessary to advance clinical practice, research, and health-care policy.

Background: The International Classification of Functioning, Disability and Health (ICF) and subsequent ICF-CY (child and youth version) recognize the importance of personal and environmental factors in facilitating holistic transition planning and service delivery for youth with chronic health conditions (YCHC)., Aims: The objective of this scoping review is to investigate the degree to which the ICF and ICF-CY have been used in transition research and practice since its initial publication., Methods: Arksey and O'Malley's five-stage methodological framework guided the scoping review using the following databases: AMED, CINAHL, EMBASE, HealthSTAR, MEDLINE, and PsycINFO. Keywords included: 'ICF', 'ICF-CY', and 'transition', which were adapted to each database., Results: 25 articles met final inclusion. Two key themes emerged regarding use of the ICF: 1) the ICF enhances transdisciplinary processes to inform transition planning and interventions; and 2) the ICF facilitates comprehensive and developmentally appropriate transition services over a youth's lifecourse. The strengths and limitations of the ICF in guiding the planning and delivery of transition services are discussed. Some limitations include the large number of items inherent within the ICF and a lack of clarity between the components of activity and participation., Conclusion: Key recommendations include: i) further explanation and development of items for quality of life and well-being, personal factors, and psychological issues; and ii) additional research to advance knowledge towards developing empirically- based evidence for the application of the ICF in clinical practice to facilitate transition., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

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., Competing Interests: Conflicts of Interest: None declared., (©Dianne J Russell, Jennifer Sprung, Dayle McCauley, Olaf Kraus de Camargo, Francine Buchanan, Roman Gulko, Rachel Martens, Jan Willem Gorter. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 11.11.2016.)

Controversy exists around the application of personal factors within the International Classification of Functioning, Disability and Health. In the framework, they are represented by one of the boxes, but without content. They are part of the model, but cannot be coded or collected statistically. This article clarifies the rationale for the inclusion of personal factors in the classification, describes the controversies related to it and provides a personal statement about the utility of personal factors in clinical practice.

Aim: To develop a generic self-management skills scale for use with adolescents diagnosed with a chronic health condition who are aged 12 to 18 years., Background: There is a lack of methodologically sound scales for healthcare teams to use to measure self-management skills in adolescents with chronic conditions transitioning to adult care., Methods: Adolescents aged 12 to 18 years with a broad range of chronic health conditions, including neurodevelopmental conditions, were recruited from May to August 2013 from nine outpatient clinics at McMaster Children's Hospital (Canada). Thirty-two participated in a cognitive interview, and 337 completed a questionnaire booklet. Interviews were used to develop the TRANSITION-Q. Rasch measurement theory (RMT) analysis was used to identify items that represent the best indicators of self-management skills. Traditional psychometric tests of measurement performance were also conducted., Results: The response rate was 92% (32/32 cognitive; 337/371 field test). RMT analysis resulted in a 14-item scale with three response options. The overall fit of the observed data to that expected by the Rasch model was non-significant, providing support that this new scale measured a unidimensional construct. Other tests supported the scale as scientifically sound, e.g. Person Separation Index = 0.82; good item fit statistics; no differential item function by age or gender; low residual correlations between items; Cronbach's alpha = 0.85; test-retest reliability = 0.90; and tests of construct validity that showed, as hypothesized, fewer skills in younger participants and in participants who required assistance to complete the scale. Finally, participants who agreed they are ready to transfer to adult healthcare reported higher TRANSITION-Q scores than did participants who disagreed., Conclusions: The TRANSITION-Q is a short, clinically meaningful and psychometrically sound scale. This generic scale can be used in research and in paediatric and adolescent clinics to help evaluate readiness for transition., (© 2014 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Background: Generalized epilepsy with febrile seizures plus (GEFS(+)) is a recently described benign childhood-onset epileptic syndrome with autosomal dominant inheritance. The most common phenotypes are febrile seizures (FS) often with accessory afebrile generalized tonic-clonic seizures (GTCS, FS(+)). In about one third, additional seizure types occur, such as absences, myoclonic, or atonic seizures. So far, three mutations within genes encoding subunits of neuronal voltage-gated Na(+) channels have been found in GEFS(+) families, one in SCN1B (beta(1)-subunit) and two in SCN1A (alpha-subunit)., Methods: The authors examined the phenotypic variability of GEFS(+) in a five-generation German family with 18 affected individuals. Genetic linkage analysis was performed to exclude candidate loci., Results: Inheritance was autosomal dominant with a penetrance of about 80%. A variety of epilepsy phenotypes occurred predominantly during childhood. Only four individuals showed the FS or FS(+) phenotype. The others presented with different combinations of GTCS, tonic seizures, atonic seizures, and absences, only in part associated with fever. The age at onset was 2.8 +/- 1.3 years. Interictal EEG recordings showed rare, 1- to 2-second-long generalized, irregular spike-and-wave discharges of 2.5 to 5 Hz in eight cases and additional focal parietal discharges in one case. Linkage analysis excluded the previously described loci on chromosomes 2q21-33 and 19q13. All other chromosomal regions containing known genes encoding neuronal Na(+) channel subunits on chromosomes 3p21-24, 11q23, and 12q13 and described loci for febrile convulsions on chromosomes 5q14-15, 8q13-21, and 19p13.3 were also excluded., Conclusion: These results indicate further clinical and genetic heterogeneity in GEFS(+).

Purpose: Development of an instrument to measure modifications of motor quality in handicapped children receiving physiotherapy., Methods: A video-based documentation method of motor behaviour in children from 0 to 3 years receiving physiotherapy was elaborated, consisting of a standardized set of scenes (script) and a rating procedure concerning different categories of motor behaviour such as coordination, stability and effort., Results: The construction of the script and the rating system proved to be sensitive in documenting and evaluating the motor behaviour of handicapped children receiving physiotherapy. A good inter-rater reliability of 0.85 was obtained. The chosen rating categories represent two independent factors: One relating more to the motor functions (motor component) and the other relating to the psycho-social aspects of movement (interactive component)., Conclusion: The instrument allows to evaluate the quality aspects of movement. They can be observed in motor behaviour regardless of which function is being executed and may develop in a different pace and at different stages of therapy than specific motor functions such as turning, sitting or walking. The instrument is intended to complement a standard neurological examination and the application of motor function tests, especially, to evaluate therapeutic outcomes.