Search

Background: Infants who survive prematurity and critical illnesses but require ongoing invasive mechanical ventilation (IMV) are at high risk for developmental disabilities. However, their detailed developmental profiles are largely unknown., Objective: To understand the developmental profiles of a cohort of young children with IMV after hospital-to-home transition., Design/methods: Developmental testing was completed 1 month after hospital discharge to determine functioning within motor, cognitive, and communicative domains using (1) the Clinical Adaptive Test/Clinical Linguistic and Auditory Milestone Scale (CAT/CLAMS); (2) the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT); and (3) The Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS). To complement validated testing, semi-structured interviews were conducted with parents to understand perceived influences on neurodevelopment., Results: Twenty children were evaluated at median (range) age 11 (5-27) months. Nearly half (45%) were male, 40% non-Hispanic Black, and 25% Hispanic. Sixteen (80%) children were survivors of prematurity. After gestational age correction, median (range) full-scale developmental quotients (DQ) were 69.5 (8-119): CAT DQ 62.5 (3-113) and CLAMS DQ 71.5 (12-125). Parents described that prolonged restriction within the hospital crib away from caregivers, despite hospital therapists, impedes development. Home environments improve development primarily through increased time with parents, but also play outside of the crib. One month after hospital discharge only 10% were receiving early intervention therapies., Conclusions/significance: Children with IMV display wide ranges of neurodevelopmental skills with a majority experiencing substantial delays in motor, communicative, and adaptive functioning. The degree and cross-domain challenges highlight the need for targeted and timely therapeutic strategies., (© 2022 Wiley Periodicals LLC.)

Background: Facilitating participation in physical recreation among children with disability is an increasingly important aim of paediatric rehabilitation.Aim: To compare the extent (diversity and frequency), context (where and companionship), experience (enjoyment) and preference for participation in physical recreation activities outside-of-school between children with disability and children with typical development.Methods and Procedures: One hundred and sixty-three children with physical, intellectual, sensory or multiple disabilities (67 girls; mean age 10.8 yr) were matched with 163 children with typical development for age, sex, geographical location and socioeconomic status. Participation in 16 physical recreation activities (including walking, cycling, team sports) was compared between these two groups using non-parametric statistics and relative risk ratios.Outcomes and Results: There were significant differences between the groups in 14 activities. A lower percentage of children with disability reported participating in 5 physical recreation activities. A higher percentage of children with disability reported not participating in their preferred activities. Children with disability were less likely to participate on their own in some day-to-day physical recreation activities such as walking and cycling.Conclusions and Implications: Differences between the groups related to the context (companionship) and preference for participation. Understanding and addressing these differences may enhance participation among children with disability. [ABSTRACT FROM AUTHOR]

Aim This study aimed to examine the prevalence of victimization among a United States-wide cohort of youth with disabilities (YWD) investigated for maltreatment in the child welfare system (CWS) and their correlation with mental health. Methods Data were drawn from baseline interviews in the second National Survey of Child and Adolescent Well-Being, a national representative survey of youth involved in the CWS. Interviews took place between 2008 and 2009 and included 675 youth, 11-17 years old and residing with biological families across 83 counties nationwide. The sample consisted of 405 females (60.1%) and 270 males (39.9%), mean age = 13.5 years. We identified YWD if they reported one or more physical or neurodevelopmental health condition (n = 247). Reported victimization experiences and Children's Depression Inventory (CDI) scores were analysed using weighted regression analyses. Results One-quarter of YWD in the CWS reported three or more victimizations during the prior year compared with 19% of youth without disabilities. The odds of YWD reporting a one-unit increase in level of victimization was 75% higher (P < 0.05) than youth without disabilities. Prevalence of clinical depression was significantly higher among YWD (14 vs. 5.5%; P < 0.05). Unlike youth without disabilities, the odds of clinical depression were 92% higher for every one-unit increase in victimization among YWD, controlling for covariates (P < 0.05). Of CWS-involved youth who reported three or more victimizations, 24.4% of YWD and 2.2% of non-disabled youth had CDI scores in the clinical range. Conclusion YWDs in the US CWS are at high risk of experiencing victimization and clinical depression. Our findings suggest that health professionals need to screen CWS-involved YWD for multiple forms of victimization, and develop and implement trauma-informed services that target the mental health sequelae that may jeopardize their independence in adulthood. [ABSTRACT FROM AUTHOR]

Background A child rights-based approach to research articulates well with Article 12 of the United Nations Convention on the Rights of the Child (CRC) and highlights the importance and value of including children's own views about aspects that concern them. The aim of this study is to compare children with intellectual disability's own ratings (as self-raters) to those of their primary caregivers (as proxy raters) regarding human rights of children. The study also aims to establish whether there is an inter-rater agreement between the self-raters and proxy raters concerning Maslow's hierarchy of needs. Method This study is nested in a larger study examining the human rights of children with intellectual disability in South Africa. In total, 162 children with intellectual disability from 11 schools across three provinces and their primary caregivers participated by answering parts of a Children's Rights Questionnaire (CRQ) developed by the researchers based on the United Nation's CRC.We compared the answers for six questions in the questionnaire that were addressed to self-raters (children) and proxy raters (primary caregivers) in the same way. Results Questions regarding basic needs, such as access to clean water or whether the child had food to eat at home, were answered similarly by self-raters and proxy raters. Larger differences were found when self-raters and proxy raters were asked about whether the child had things or friends to play with at home. Socio-economic variables seemed to affect whether self-raters and proxy raters answered similarly. Conclusion The results underscore the importance of promoting children's rights to express themselves by considering the opinions of both the children as self-raters and their primary caregivers as proxy raters - not only the latter. The results indicate that it is especially important to include children's own voices when more complex needs are surveyed. Agreement between selfand proxy ratings could be affected by socio-economic circumstances. [ABSTRACT FROM AUTHOR]

Background In 2012, two CanChild researchers published an article in Child: Care, Health and Development titled 'The "F-words" in childhood disability: I swear this is how we should think!' Building on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework, the article featured key strengths-based ICF themes (i.e. the 'F-words' - Function, Family, Fitness, Fun, Friends and Future). This paper reports on a knowledge mobilization initiative designed to spread awareness of the 'F-words' ideas. Methods Families and researchers collaborated to develop, disseminate and evaluate an online awareness video. The video used written descriptions, parents' reflections and their pictures, music and graphics to captivate the audience. Posted on the CanChild website in May 2014, information about the video was distributed via various dissemination strategies and evaluated by tracking its views and through an online survey. Results After a 2-month evaluation, there were 715 views and 137 survey responses. Of the survey responses, 89% lived in Canada, 55% had not previously heard of the 'F-words', 98% 'extremely liked'/'liked the ideas' and 88% indicated they would share the video. Conclusions By creating a short and captivating video, we were able to spread awareness to a wide audience in a short period of time. Engaging families throughout the project was critical to the success of the video. By working together, we hope to continue bridging research and practice and moving the 'F-words' concepts forward one 'word' at a time. [ABSTRACT FROM AUTHOR]

Background: The causes and pathogenesis of cerebral palsy (CP) are all poorly understood, particularly in low- and middle-income countries (LMIC). There are gaps in knowledge about CP in Bangladesh, especially in the spheres of epidemiological research, intervention and service utilization. In high-income countries CP registers have made substantial contributions to our understanding of CP. In this paper, we describe a pilot study protocol to develop, implement, and evaluate a CP population register in Bangladesh (i.e., Bangladesh Cerebral Palsy Register - BCPR) to facilitate studies on prevalence, severity, aetiology, associated impairments and risk factors for CP.Methods/design: The BCPR will utilise a modified version of the Australian Cerebral Palsy Register (ACPR) on a secured web-based platform hosted by the Cerebral Palsy Alliance Research Institute, Australia. A standard BCPR record form (i.e., data collection form) has been developed in consultation with local and international experts. Using this form, the BPCR will capture information about maternal health, birth history and the nature of disability in all children with CP aged <18 years. The pilot will be conducted in the Shahjadpur sub-district of Sirajgonj district in the northern part of Bangladesh. There are 296 villages in Shahjadpur, a total population of 561,076 (child population ~ 226,114), an estimated 70,998 households and 12,117 live births per annum. Children with CP will be identified by using the community based Key Informants Method (KIM). Data from the completed BPCR record together with details of assessment by a research physician will be entered into an online data repository.Discussion: Once implemented, BCPR will be, to the best of our knowledge, the first formalised CP register from a LMIC. Establishment of the BCPR will enable estimates of prevalence; facilitate clinical surveillance and promote research to improve the care of individuals with CP in Bangladesh. [ABSTRACT FROM AUTHOR]

The overarching purpose of this study was to ascertain the prevalence of maternal and infant/child health indices that have an established link to childhood disability (CHD) and their association with socio-economic status (SES) in Kenya. Data were drawn from the 2008/2009 Kenya Demographic and Health Survey. Descriptive and weighted Pearson’s chi-square tests were conducted to determine the characteristics of respondents and differences in the proportion of the disability risk factors by place of residence. Logistic regression analyses were then conducted to evaluate the association between SES and select CHD-related factors. Results showed that almost all the disability risk factors were more prevalent and statistically significant among rural residents compared to their urban counterparts. Stratified univariate and multivariate analyses showed differential associations between SES and several disability risk factors by area of resident. This study has provided empirical evidence connecting poverty with several known disability risk factors, i.e. maternal and infant/child health indices. [ABSTRACT FROM AUTHOR]

Background Parents of disabled children often seek support from their peers. The shared experience between parents appears to be a crucial mediating factor. Understanding how a sense of shared experience is fostered can help to design and evaluate services that seek to provide peer support. Methods We carried out a qualitative study involving semi-structured interviews and focus groups. Participants were 12 parents and 23 befrienders who had contact with the Face2 Face one-to-one befriending service in Devon and Cornwall during a 12-month period, and 10 professionals from health, social care and education. Findings Formal structures and processes in place such as training and ongoing supervision and support were highly valued as was the highly personalized, confidential, flexible, one-to-one at-home nature of the service. Crucial to establishing rapport was putting the right people together and ensuring a good match between befrienders and parents. Clearly, the befriending parent has to be emotionally prepared to provide help. However, if the parent being offered support was not ready to accept help at the time it was offered or the type of support was not right for them, they are less likely to engage with the service. Conclusion Organizational and process factors as well as characteristics of the parents offering and receiving support contribute to the sense of shared experience in one-to-one peer support. These factors interact to influence whether peer support is effective and should be explicitly considered when designing and evaluating services. [ABSTRACT FROM AUTHOR]

Background Parents of disabled children are encouraged to seek peer support. Delivering one-to-one support requires resources; therefore, investigating how these services may impact on families and those providing the service is important when evaluating such services. Methods We carried out a qualitative study involving semi-structured interviews and focus groups. Participants were 12 parents and 23 befrienders who had contact with the Face2 Face one-to-one befriending service in Devon and Cornwall during a 12-month period, and 10 professionals from health, social care and education services. Findings Shared experience was perceived central to successful peer support and was a catalyst for other elements of support, enabling parents to ( i) learn from the experience of others; ( ii) speak freely in a safe and non-judgemental environment; and ( iii) receive support and encouragement from their befriender. These elements underpinned perceived outcomes for both parents providing and receiving support. Outcomes for parents receiving support centred on emotional stability, personal growth and reduced isolation. Supporting parents experienced positive outcomes through their training, mutual support and the feeling that they were helping others. Parents and befrienders appeared to benefit through expanding their social network. Nevertheless providing support was reported to create emotional burden and concerns for befrienders around their performance, and also required a substantial time commitment. Conclusions Befrienders as well as parents perceived positive outcomes from their involvement in peer support although there is also potential for less positive impact on those offering support. [ABSTRACT FROM AUTHOR]

Introduction: Participation in community leisure occupations of children with disabilities is important, yet poorly integrated into practice. This knowledge translation strategy tested an intervention to increase clinicians' awareness and to bring about change in practice toward a focus on participation. Method: During this qualitative study, 14 clinicians participated in six learning sessions facilitated by a knowledge broker. Three months post-intervention, clinicians were individually interviewed, by drawing on the Professional Evaluation and Reflection on Change Tool, to evaluate potential change in practice. Two researchers independently performed thematic data analysis. Results: Impact on practice emerged in both the personal and professional levels (for example, empowerment, validation of clinical wisdom, change in thinking and behavior). Clinicians suggested strategies for integrating participation in their day-to-day practice, illustrating a substantial intention for change, while describing barriers and facilitators for implementation (for example, organizational mandate). Two additional themes described the overall experience of the intervention: motivation to learn (for example, desire to link research to practice) and elements of the learning environment (for example, meeting informational needs). Conclusion: This strategy was effective in redirecting clinicians' focus toward the notion of participation and establishing readiness for change. This shift can potentially facilitate new programs in occupational therapy that are participation-based and communityfocused. [ABSTRACT FROM AUTHOR]

Service providers, policy makers and researchers are increasingly concerned with service provisions for hard-to-reach families. These are defined as families who are eligible for a service, but are difficult for service providers to identify or engage. In our setting, hard-to-reach families were those who missed appointments without prior notice, a problem that was inefficient for the organization, frustrating for clinicians and did not meet child or family needs. This case report describes the development of a care path to promote engagement with hard-to-reach families ( MATCH: Making Alternative Therapy Choices Happen) and its adoption among clinicians within a community-based paediatric rehabilitation centre in Ontario, Canada. The care path was developed and implemented at a pilot site at Kids Ability Centre for Child Development ( Kids Ability), which allowed us to tailor the care path using clinician input via questionnaires, and to monitor use of the care path. Following pilot implementation clinicians reported being satisfied with the approach and perceived improved child and family outcomes. The care path was expanded to four service sites using a Knowledge Brokering model. After training, clinicians reported a good understanding of the care path: 87% felt that they would have an opportunity to use it within six months, however only 68% felt ready to use it. Challenges to offering MATCH and continuing training preferences were investigated. The MATCH care path illustrates a practical application of the principles of best-practice for engaging hard-to-reach families, tailored for a specific paediatric rehabilitation setting. Continued research is planned to further define the hard-to-reach families within paediatric rehabilitation, determine how hard-to-reach families view engagement in services, and evaluate the effectiveness of MATCH implementation in reducing missed appointments and promoting family engagement in paediatric rehabilitation services. [ABSTRACT FROM AUTHOR]

Background Although the significant impact of visual disability in childhood has been widely recognized, children's own perspectives of living with a visual impairment have not been considered. We report the experiences of visually impaired ( VI) children and young people aged 10-15 years about growing up with impaired sight. Methods The participants were 32 VI children and young people, aged 10-15 years [visual acuity logarithm of minimum angle of resolution ( LogMAR) worse than 0.51] recruited through National Health Service ( NHS) paediatric ophthalmology and developmental vision clinics and 11 VI pupils aged 12-17 attending a specialist school for pupils with disabilities. Individual semi-structured interviews with participants captured their experiences of living with a visual impairment. A child-centred interview topic guide was developed from a literature review, observations at ophthalmology clinics, consultation with health and education professionals working with VI children and young people, and interviews and a focus group with VI pupils from the specialist school. Collaborative qualitative thematic analysis by three researchers identified emergent themes. NVivo software was used for coding the data. Results Analysis identified six themes concerning living with a visual impairment: (i) social relationships, participation and acceptance; (ii) independence and autonomy; (iii) psychological and emotional well-being; (iv) aspirations and concerns about the future; (v) functioning - home, school and leisure; and (vi) treatment of eye condition. Key issues included: the importance of family and peer support; balancing independence, support and safety; the emotional burden and adjustment of living with a disability; concerns about education and job prospects in the future; functional restrictions and limitations; and ongoing management of the eye condition. Conclusions The findings offer insights into the complex realities of living with visual impairment. They provide the basis for development of patient-reported outcome measures. They can also serve to help enrich the understanding of health professionals working with VI children and young people, potentially enabling them to better support them. [ABSTRACT FROM AUTHOR]

Although access to effective medical care for acutely sick children has improved globally, the number of children surviving but who may not be thriving due to disability, is increasing. This study aimed to understand the views of health professionals, educators and caregivers of pre-school children with disabilities in Malawi, Pakistan and Uganda regarding early identification, referral and support. Using applied thematic analysis, we identified themes relating to; limited 'demand' by caregivers for services; different local beliefs and community perceptions regarding the causes of childhood disability. Themes relating to 'supply' of services included inability to respond to community needs, and inadequate training among professionals for identification and referral. Stepwise, approaches provided to the families, community health worker and higher-level services could include training for community and primary care health workers on basic identification techniques and enhanced awareness for families and communities on the importance of early identification of children with disabilities., Competing Interests: No potential competing interest was reported by the authors., (© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)

Background: Participation in the community is a fundamental human right for children with disabilities and is a key component of their health and development. Inclusive communities can enable children with disabilities to participate fully and effectively. The Child Community Health Inclusion Index (CHILD-CHII) is a comprehensive assessment tool developed to examine the extent to which community environments foster healthy, active living for children with disabilities., Objectives: To assess the feasibility of applying the CHILD-CHII measurement tool across different community settings., Methods: Participants recruited through maximal representation, and purposeful sampling from four community sectors (Health, Education, Public Spaces, Community Organizations) applied the tool on their affiliated community facility. Feasibility was examined by assessing length, difficulty, clarity, and value for measuring inclusion; each rated on a 5-point Likert scale. Participants provided comments for each indicator through the questionnaire and a follow-up interview., Results: Of the 12 participants, 92% indicated that the tool was 'long' or 'much too long'; 66% indicated that the tool was clear; 58% indicated that the tool was 'valuable' or 'very valuable'. No clear consensus was obtained for the level of difficulty. Participants provided comments for each indicator., Conclusion: Although the length of the tool was regarded as long, it was seen to be comprehensive and valuable for stakeholders in addressing the inclusion of children with disabilities in the community. The perceived value and the evaluators' knowledge, familiarity, and access to information can facilitate use of the CHILD-CHII. Further refinement and psychometric testing will be conducted., (© 2023. The Author(s).)

This study explored the association between socioecological factors and outdoor physical activity (PA) and play in children with disabilities during the COVID-19 pandemic. Parents (N = 133) completed a survey to report changes in their child's outdoor PA and play during the pandemic (from prepandemic levels), and child, household, and neighborhood environment factors. Children with a PA-supporting parent and from multichild and White households had lower odds of reporting decreased outdoor PA. Children from multichild, higher income, married couple households and a PA-supporting parent had lower odds of decreased outdoor play. Living in neighborhoods with higher urbanization (i.e., high dwelling density, street intersections, and land-use mix) was associated with greater odds of decreased outdoor PA and play. Future research that uses larger and more representative samples of children with disabilities is needed to test for the multivariate effects of socioecological variables on outdoor PA and play.

Purpose: The study aim was to develop and assess the measurement properties of the Functional Impact of Augmentative and Alternative Communication - Educator (FIAAC-E) scale - an educator-reported measure designed to detect change in factors associated with communicative participation in students who use augmentative and alternative communication (AAC)., Methods: The study had three phases. In phase 1 (content validity), 22 content specialists independently rated the relevancy of 22 dimensions proposed for the new scale. In phase 2 (item generation, face validity), 8 educators independently completed a preliminary version of the FIAAC-E scale and flagged items that were unclear. Next, these educators adjusted the wording of unclear items during consensus-building sessions. In phase 3 (item reduction, reliability, convergent validity), 62 educators completed an online survey that included the revised FIAAC-E scale. Survey data were used to shorten the scale, estimate its reliability, and evaluate support for its convergent validity., Results: In phase 1, the 11 dimensions ranked most highly by content specialists were selected for inclusion in the preliminary scale. In phase 2, educators reviewed 113 items and revised 33 to improve clarity. In phase 3, correlational statistics informed the selection of 77 items for the shortened scale. Subsequent data analyses indicated acceptable levels of internal consistency and test-retest reliability and support for convergent validity of the preliminary measure., Conclusion: The study provides emerging evidence that supports the FIAAC-E scale as a reliable way to evaluate communicative participation in children and youth who use AAC systems at school.Implications for rehabilitationUsing a reliable means to measure the effectiveness of AAC for children and youth at school may reveal important factors that influence successful communicative, academic, and social participation in school.The FIAAC-E scale is a promising educator-reported questionnaire to inform the development of communication goals and monitor progress towards meeting these goals for students with complex communication needs.

Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research; however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and relevance of the research and benefit patient partners (e.g. enhanced self-esteem, increased research knowledge and skills); however, the methods, challenges, outcomes and recommendations of engaging youth with neurodisabilities and their families in evidence syntheses are unknown. Two parents of youth with complex disability needs were engaged as partners throughout this review. Following methods outlined by Arksey and O'Malley (2005), the primary research question in this scoping review is twofold: (i) what activities have youth with neurodisabilities and their families been engaged in as part of evidence syntheses and (ii) what were the outcomes of that engagement? After full text review of 369 articles, nine articles were included. Youth and families were engaged prior to the evidence synthesis and at every stage in the project, most often during data analysis where they contextualized the findings. Youth and family engagement were not formally evaluated; however, positive outcomes were reported by parents and researchers. Challenges such as increased time, sustaining engagement, and parents' dissatisfaction with their level of involvement were reported. Recommendations centred around providing partners with information, building relationships via social media, and openly communicating about roles, feedback and logistics. Childhood disability researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses and how they might improve accessibility for youth with neurodisabilities and their families. Further research is needed to solidify a unified framework for conduct and reporting of youth and family engagement in evidence syntheses., (© 2022 John Wiley & Sons Ltd.)

Background: Addressing barriers in the environment can contribute to health and quality of life for children with disabilities and their families. The Community Health Inclusion Index (CHII) is a measurement tool developed in the United States to identify environmental barriers and facilitators to community health inclusion. The CHII adopts an adult viewpoint and aspects crucial for children may have been omitted., Aims: This study aimed to develop a comprehensive list of items that are relevant for the community inclusion of children with disabilities in the Canadian context., Methods: The relevance and priority of items generated from a review of existing guidelines and best practice recommendations for community inclusion were rated as a dichotomous response and discussed by an expert panel in relevant fields related to children with disabilities., Results: A total of 189 items from 12 instruments and best practice guidelines were identified. Expert consensus contributed to a relevant and comprehensive list of items. Expert suggestions were considered to refine and reduce the item list., Conclusion: This study highlights the importance of a child version of a community inclusion tool, as the needs of children with disabilities differ from those of adults. It can help communities improve inclusion of children with disabilities and inform health promotion initiatives for this population., (© 2022 John Wiley & Sons, Ltd.)

Aim: To determine the level of evidence for the effectiveness of telerehabilitation against comparison interventions in improving child- and parent-related outcomes in children and youth with developmental disabilities., Method: A systematic approach, comprised of a comprehensive search; transparent study selection, data extraction, quality assessment by independent reviewers; and synthesis of sufficiently similar data (per diagnostic group, health profession, and overall level of evidence for each outcome) was undertaken., Results: Fifty-five studies (29 randomized trials) were included across six diagnostic groups and ten health professions. Common telerehabilitation targets varied across diagnostic groups and included motor function, behavior, language, and parental self-efficacy. Telerehabilitation was found to be either more effective or as effective versus comparison intervention in improving 46.9% or 53.1% of outcomes, respectively. It was never found to be detrimental or less effective. Strong to moderate, limited, and insufficient levels of evidence were found for 36.5%, 24.5%, and 38.6% of the outcomes, respectively., Conclusion: There is sufficient evidence suggesting that telerehabilitation is a promising alternative when face-to-face care is limited. It is comparable to usual care and is more effective than no treatment. Blending in-person and telerehabilitation approaches could be beneficial for the post-pandemic future of rehabilitation in pediatric care.

A growing body of research underscores the early origins of health in later life; however, relatively little is known about the relationship between childhood physical health and adult mental health. This research explores the relationship between childhood disability and depressive symptoms among a nationally representative sample of late midlife adults (N = 3,572). Using data from Waves 8–10 (2006–2010) of the Health and Retirement Study, a series of ordinary least squares regression models were created to assess the number of depressive symptoms. Childhood disability was significantly associated with higher levels of depressive symptoms; however, late midlife social and health factors accounted for differences between those with and without childhood disability. Late midlife physical health appeared to be a particularly salient mediator. Individuals who experience childhood disability may accumulate more physical impairment over the life course, thus experiencing worse mental health such as greater depressive symptoms in late midlife. [ABSTRACT FROM PUBLISHER]

Background Developmental coordination disorder ( DCD) is a prevalent health condition that is frequently unrecognized despite the substantial evidence that has accumulated regarding how it affects children's health, education and skills. Most literature focuses on measurement of impairment and description of intervention approaches for individual children; little is known about the principles that should guide best practice and service delivery for children with DCD as a population. The purpose of this study was to identify these principles. Methods A scoping review was used to 'map' the information available to inform intervention and service delivery. Scholarly and grey literature written in English was identified in six databases, using a combination of keywords (e.g. guidelines, management, models and DCD); a 'snow-balling' technique was also used in Canada and the UK to access clinical protocols used in publicly funded health care systems. Over 500 documents were screened: 31 met inclusion criteria as they outlined practice principles for children with DCD as a population. Data regarding best practices were independently extracted by two reviewers and then compared with achieve consistency and consensus. Results Two over-arching themes emerged, with five principles: (1) Organizing services to efficiently meet the comprehensive needs of children (e.g. Increasing awareness of DCD and coordination; Implementing clearly defined pathways; Using a graduated/staged approach); (2) Working collaboratively to offer evidence-based services (e.g. Integration of child and family views; Evidence-based interventions fostering function, participation and prevention). Conclusion Numerous documents support each of the principles, reflecting agreement across studies about recommended organization of services. While these principles may apply to many populations of children with disabilities, this review highlights how essential these principles are in DCD. Researchers, managers, clinicians, community partners and families are encouraged to work together in designing, implementing and evaluating interventions that reflect these principles. [ABSTRACT FROM AUTHOR]

Objective: To develop a district model for establishing early detection of childhood disability below 6 y of age and to develop appropriate referral linkages for confirmation of the diagnosis and establish home based early intervention therapy to all needy children. Methods: Trained Accredited Social Health Activist (ASHA) workers conducted the preliminary survey for identifying developmental delay/disability among children below 6 y of age using Trivandrum Developmental Screening Chart (TDSC) (0-6 y) and a team of experts assessed the screen positives in developmental evaluation camps conducted at primary health centres (PHCs). Results: Community survey was carried out and 1,01,438 children below 6 y of age in Thiruvananthapuram district were screened by ASHA workers and 2,477 (2.45 %) positive cases (TDSC two or more item delay) were identified and these children were called for the developmental evaluation camps conducted at 80 PHCs in the district. Among the 1,329 children who reached the evaluation camps 43.1 % were normal. 24.98 % children had speech and language delay and 22.95 % children had multiple disabilities. Developmental delay was observed among 49.89 % children and cerebral palsy in 8.43 % and intellectual disability 16.85 % were confirmed. Visual impairment in 3.31 % and neuromuscular disorders in 1.35 were found among children evaluated in the camp. Conclusions: The results of this district wide early detection of disability survey by trained ASHA workers among children below 6 y of age showed a community prevalence of 3.08 % observed, based on two or more item delay in TDSC and among these children, 43.1 % were normal, 49.89 % had developmental delay, 24.98 % had speech and language delay and 22.95 % had multiple disabilities. [ABSTRACT FROM AUTHOR]

Background: Wheelchairs for disabled children (≤18 years) can provide health, developmental and social benefits. World Health Organisation and United Kingdom Government reports demonstrate the need for improved access to wheelchairs both locally and internationally. The use of health economics within this field is lacking. Provision of wheelchairs based on cost-effectiveness evidence is not currently possible. We conducted the first systematic review in this field to incorporate evidence of effectiveness, service user perspectives, policy intentions and cost-effectiveness in order to develop a conceptual framework to inform future research and service development. Methods: We used an adapted EPPI-Centre mixed-method systematic review design with narrative summary, thematic and narrative synthesis. 11 databases were searched. Studies were appraised for quality using one of seven appropriate tools. A conceptual framework was developed from synthesised evidence. Results: 22 studies and 14 policies/guidelines were included. Powered wheelchairs appear to offer benefits in reduced need for caregiver assistance; improved communicative, personal-social and cognitive development; and improved mobility function and independent movement. From 14 months of age children can learn some degree of powered wheelchair driving competence. However, effectiveness evidence was limited and low quality. Children and parents placed emphasis on improving social skill and independence. Participation in wider society and development of meaningful relationships were key desired outcomes. Policy intentions and aspirations are in line with the perspectives of children and parents, although translation of policy recommendations into practice is lacking. Conclusions: There is a distinct lack of high quality effectiveness and economic evidence in this field. Social and health needs should be seen as equally important when assessing the mobility needs of disabled children. Disabled children and parents placed highest priority on independence and psychosocial outcomes of wheelchair interventions. Translation of policy and guidelines into practice is lacking and more effective implementation strategies are required to improve services and outcomes. Future research should focus on outcome measure development, developing economic evaluation tools and incorporating these into high quality studies to address known research gaps. The novel conceptual framework maps current gaps in evidence and outlines areas for development. [ABSTRACT FROM AUTHOR]

Individuals with a comorbid diagnosis of cerebral palsy and autism spectrum disorder can have significant communication deficits. The implementation of an alternative and augmentative communication (AAC) device is often essential to promote language development and participation in school, home and community environments. The present study evaluated the impact of introducing a high-tech alternative and augmentative device, namely an Apple iPad with the “GoTalk Now” communication application to a student diagnosed with cerebral palsy and autism spectrum disorder. Integration of the technology focused on promoting key elements associated with long term AAC usage, namely, targeted training of the student, teacher, educational assistant and parents, over the course of the school year. Marked increases in the student's communication skills and non-academic school functioning were observed. The need for communication partner prompting declined over time while the student, teacher and parent remained engaged by the iPad solution. This case study supports the classroom implementation of high-tech communication devices for those with complex communication needs via a comprehensive access delivery protocol that invokes systematic student, teacher, educational assistant and parent training. [ABSTRACT FROM AUTHOR]

Background Cerebral palsy ( CP) is a non-progressive condition present from birth or infancy that includes various neurological patterns of dysfunction. It is characterized by abnormal motor control and/or posture and can involve communication difficulties. Children and youth with CP face multiple social and developmental challenges during their formative years including mild to severe physical limitations, poor socialization, limited recreational activities, and stigmatization. Families play a key role in supporting adaptation to CP. The purpose of this paper was to explore women's perceptions of the ways their families contributed to their overall quality of life with CP. Methods Drawing on data from a qualitative study of eight women with CP, the purpose of this analysis was to examine perceptions of the ways in which their families and individual family members contributed to participants' overall quality of life and adaptation to CP. Respondents ranged in age from 22 years to 55 years and had varied forms of CP. The study was based on a feminist biographical approach, which combines biographical methods with feminist principles. Results Participants provided considerable, rich contextual data on their family life and the pivotal role family played. The analysis identified four themes related to supportive family roles: (1) being an advocate, and teaching advocacy; (2) promoting inclusion and acceptance; (3) integrating therapy into daily life; and (4) the importance of siblings as friends and mentors. Conclusions Health-care providers can contribute to the family's ability to facilitate quality of life by providing guidance on how to be advocates and teach advocacy, including the child with CP in family activities, accessing therapy and incorporating beneficial therapies at home, and promoting healthy sibling relationships. [ABSTRACT FROM AUTHOR]

Aims Assessing disabilities in children is essential and Danish parents provide increasingly important feedback on how their child's disability affects daily living. The Nordic Five to Fifteen ( FTF) parent questionnaire is widely used in Nordic countries to detect atypical or delayed development in children. Our study evaluated its internal validity and whether it could be used to generate a common disability variable across childhood neurological disorders and severities. Methods The 28-statement FTF questionnaire was completed by the parents of children with spina bifida, muscular disorders, spinal atrophy, cerebral palsy, blindness, deafness, mental retardation and disability, who received treatment for brain tumours. Psychometric analysis and Rasch analysis of the five FTF code qualifier level data were carried out. Results A total of 227 of 332 (68.4%) parents participated. The mean qualifier score was 3.06 (standard deviation 0.89, range 2.31-4.26), and the variances mean was 1.57 (range 0.87-2.38). The corrected code-total correlation was 0.65, and reliability was 0.96. The Rasch analysis demonstrated good fit alignment of codes. Conclusion The FTF questionnaire can be used with children with neurological disabilities, and the Rasch scale analysis results indicate that it could form the analytical basis for developing a common disability variable. [ABSTRACT FROM AUTHOR]

Classification systems in health care are usually based on current understanding of the condition. They are often derived empirically and adopted applying sound principles of measurement science to assess whether they are reliable (consistent) and valid (true) for the purposes to which they are applied. In the past 15 years, the authors have developed and validated classification systems for specific aspects of everyday function in people with cerebral palsy—gross motor function, manual abilities, and communicative function. This article describes the approaches used to conceptualize each aspect of function, develop the tools, and assess their reliability and validity. We report on the utility of each system with respect to clinical applicability, use of these tools for research, and the uptake and impact that they have had around the world. We hope that readers will find these accounts interesting, relevant, and applicable to their daily work with children and youth with disabilities. [ABSTRACT FROM AUTHOR]

Abstract: Background: This study to investigated the effects of chronically disabled children (CDC) on their families. Method: The study included 655 CDD and their families from 45 cities located in Turkey representing the seven regions of the country. Sociodemographic characteristics, presence of mental retardation, primary care-giver, presence of social insurance, the number of other children and other family members living in the family, duration of the disorder, disabling conditions in the other children, time spent for care giving, and level of income were recorded. WeeFIM (Functional Independence for Children) and Impact on Family Scale (IPFAM) were administered to evaluate the level of functional independence and the overall burden on the families, respectively. Results: IPFAM and WeeFIM scores were not different between geographical regions (P > 0.05). Functional independence level of the child and the level of education of the mothers were significant contributors to the disruption of social relations subscale of IPFAM (P < 0.05). WeeFIM score, presence of mental retardation, and income were significant contributors to general impact subscale. WeeFIM, mothers' level of education, and income were significant factors for the financial support subscale (P < 0.05). WeeFIM score, presence of mental retardation, mothers' level of education, and income also were found to contribute to the total impact subscale scores (P < 0.05). None of the evaluated factors were found to contribute to coping subscale of IPFAM (P > 0.05). Conclusion: Although some are expected, certain intriguing results, such as the impact of the mothers' literacy level, warrant further larger scale comprehensive studies to investigate the factors that contribute to the impact of CDC on their families. Also, policies that focus on family centered rehabilitation approaches should be encouraged in an effort to decrease the overall impact of CDC on families. [Copyright &y& Elsevier]

PURPOSE: LIFEspan is a service delivery model of continuous coordinated care developed and implemented by a cross-organization partnership between a pediatric and an adult rehabilitation hospital. Previous work explored enablers and barriers to establishing the partnership service. This paper examines healthcare professionals' (HCPs') experiences of 'real world' service delivery aimed at supporting transitional rehabilitative care for youth with disabilities. METHODS: This qualitative study - part of an ongoing mixed method longitudinal study - elicited HCPs' perspectives on their experiences of LIFEspan service delivery through in-depth interviews. Data were categorized into themes of service delivery activities, then interpreted from the lens of a service integration/coordination framework. RESULTS: Five main service delivery themes were identified: 1) addressing youth's transition readiness and capacities; 2) shifting responsibility for healthcare management from parents to youth; 3) determining services based on organizational resources; 4) linking between pediatric and adult rehabilitation services; and, 5) linking with multi-sector services. CONCLUSIONS: LIFEspan contributed to service delivery activities that coordinated care for youth and families and integrated inter-hospital services. However, gaps in service integration with primary care, education, social, and community services limited coordinated care to the rehabilitation sector. Recommendations are made to enhance service delivery using a systems/sector-based approach. [ABSTRACT FROM AUTHOR]

Background The Child's Challenging Behaviour Scale ( CCBS) was designed to measure a mother's rating of her child's challenging behaviours. The CCBS was initially developed for mothers of school-aged children with developmental disability and has previously been shown to have good psychometric properties using classical test theory techniques. The aim of this study was to use Rasch analysis to fully evaluate all aspects of the scale, including response format, item fit, dimensionality and targeting. Methods The sample consisted of 152 mothers of a school-aged child (aged 5-18 years) with a disability. Mothers were recruited via websites and mail-out newsletters through not-for-profit organizations that supported families with disabilities. Respondents completed a survey which included the 11 items of the CCBS. Rasch analysis was conducted on these responses using the RUMM2030 package. Results Rasch analysis of the CCBS revealed serious threshold disordering for nine of the 11 items, suggesting problems with the 5-point response format used for the scale. The neutral midpoint of the response format was subsequently removed to create a 4-point scale. High levels of local dependency were detected among two pairs of items, resulting in the removal of two items (item 7 and item 1). The final nine-item version of the scale ( CCBS Version 2) was unidimensional, well targeted, showed good fit to the Rasch model, and strong internal consistency. Conclusions To achieve fit to the Rasch model it was necessary to make two modifications to the CCBS scale. The resulting nine-item scale with a 4-point response format showed excellent psychometric properties, supporting its internal validity. [ABSTRACT FROM AUTHOR]

This report provides an expert appraisal of the Canadian Para Report Card on physical activity (PA) for children and adolescents with disabilities. Thirteen indicators were graded by a panel of researchers, representatives from disability and PA organizations, and parents of children and adolescents with disabilities using benchmarks of the Global Matrix 4.0 and previous Canadian PA Report Cards. Facilitated panel discussions were used to appraise the available evidence based on data gaps, opportunities, and recommendations. The available data sources included four nationally generalizable or representative data sets. Grades were assigned to 8/13 indicators and ranged from B+ to F. Data gaps in measurement and national surveillance systems were identified. Ableism was an issue identified within some of the reporting benchmarks. The absence of PA from existing accessibility legislation in Canada was a policy gap of concern. Recommendations related to research, surveillance, and policy are provided to enhance PA among children and adolescents with disabilities in Canada.

Introduction: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops., Methods: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned., Findings: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding., Conclusion: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together., (© 2022 Occupational Therapy Australia.)

Disability theorists have long highlighted the role of institutional, social, and environmental barriers in constructing disability, emphasizing its parallels with other socially constructed axes of stratification. However, despite theoretical developments toward sociological understandings of disability, social stratification and life-course research have largely neglected childhood disability as a social division. As a result, we still know little surrounding the socio-economic attainment of disabled children and young people. Drawing on Next Steps data, this research note highlights stark overlooked inequalities between disabled and non-disabled young people's activity status and social mobility in early adulthood. We specifically focus on the importance of social class for disabled young people's outcomes, emphasizing the need for intersectional analyses of disability inequalities. We also outline longitudinal survey data enhancements necessary for life-course research on childhood disability and its intersections., (© 2022 The Authors. The British Journal of Sociology published by John Wiley & Sons Ltd on behalf of London School of Economics and Political Science.)

Highlights: [•] Examined household task participation of youth with cerebral palsy (CP), Down syndrome (DS) and typical development (TD). [•] DS and CP groups were similar on task performance and assistance; CP group had a higher independence index. [•] Patterns of household participation show that children and adolescents with CP and DS are actively engaged in a number of daily self-care and family-care tasks. [•] All parents agreed on importance of household tasks participation. [Copyright &y& Elsevier]

Highlights: [•] We assess the trends in the prevalence of childhood disability in Taiwan. [•] We obtained data on cases 3–17 years of age from the national disability registry. [•] We calculated the prevalence and the proportion in all disabilities combined for each disability category. [•] The prevalence of all disabilities combined increased constantly from 2000 to 2011. [•] Intellectual disability contributed most cases, and autism spectrum disorders is an emerging problem. [Copyright &y& Elsevier]

Psychosocial determinants of children's out of school participation were examined, using secondary analyses of data from 427 children with physical disabilities (from 12 service locations in Ontario Canada) and 354 children without disabilities, ages 6 to 14. For both groups of children, hierarchical regression analyses indicated that psychosocial variables added significant incremental variance (6% to 14%) to the prediction of active physical intensity and social activity enjoyment, beyond that accounted for by family income, child age and sex, and physical functioning. As well, there were significant psychosocial determinants, with medium to large effect sizes. Athletic competence and hyperactivity had specific effects on active physical activities and social activities, respectively, for both groups of children. Disability-specific determinants included social acceptance, emotional functioning, and peer difficulties (only significant for children with disabilities). It was concluded that psychosocial variables play an important role in children's enjoyment and intensity of participation in leisure activities. [ABSTRACT FROM AUTHOR]

Background: Despite a high prevalence of disability, Aboriginal Australians access disability services in Australia less than non-Aboriginal Australians with a disability. The needs of Aboriginal children with disability are particularly poorly understood. They can endure long delays in treatment which can impact adversely on development. This study sought to ascertain the factors involved in accessing services and support for Aboriginal children with a disability. Methods: Using the focus group method, two community forums, one for health and service providers and one for carers of Aboriginal children with a disability, were held at an Aboriginal Community Controlled Health Service (ACCHS) in the Sydney, metropolitan area of New South Wales, Australia. Framework analysis was applied to qualitative data to elucidate key issues relevant to the dimensions of access framework. Independent coding consistency checks were performed and consensus of analysis verified by the entire research team, several of whom represented the local Aboriginal community. Results: Seventeen health and social service providers representing local area government and non-government-funded health and social service organisations and five carers participated in two separate forums between September and October 2011. Lack of awareness of services and inadequate availability were prominent concerns in both groups despite geographic proximity to a major metropolitan area with significant health infrastructure. Carers noted racism, insufficient or non-existent services, and the need for an enhanced role of ACCHSs and AHWs in disability support services. Providers highlighted logistical barriers and cultural and historical issues that impacted on the effectiveness of mainstream services for Aboriginal people. Conclusions: Despite dedicated disability services in an urban community, geographic proximity does not mitigate lack of awareness and availability of support. This paper has enumerated a number of considerations to address provision of disability services in an urban Australian Aboriginal community including building expertise and specialist capacity within Aboriginal Health Worker positions and services. Increasing awareness of services, facilitating linkages and referrals, eliminating complexities to accessing support, and working with families and Aboriginal community organisations within a framework of resilience and empowerment to ensure a relevant and acceptable model are necessary steps to improving support and care for Aboriginal children with a disability. [ABSTRACT FROM AUTHOR]

This review summarizes research findings to date on neurological and health outcomes following preterm birth, tools to identify children at risk for neurodevelopmental impairment and interventions to prevent preterm birth and improve outcomes. We bring together findings from research in high- and low-income countries, with an aim to provide a global perspective on the issues. Around the world, preterm birth is rising in importance as a cause of under-five morbidity and mortality, and we project that this trend will continue over time, particularly given the lack of interventions to prevent the condition. With the development of improved screening instruments, further identification and scale up of cost-effective interventions to optimize early childhood development and accelerated research on the underlying biological mechanisms, we have an opportunity to reduce rates of neurodevelopmental impairment, particularly in countries with the highest burden. [ABSTRACT FROM AUTHOR]

This study explores eldercare in families of disabled children. Qualitative analysis of interviews with eight mothers simultaneously caring for elders and children with extended care needs suggests that (a) elders who need care may have previously been a critical source of support; (b) resources needed for one type of care may be depleted by the other; (c) family members may feel mothers are too burdened to care for elders; (d) the skills acquired in the process of parenting children with disabilities can transfer to eldercare; and (e) bonds between children with disabilities and elders may help mothers cope with convergent caregiving. [ABSTRACT FROM AUTHOR]

Introduction The concept of participation was introduced by the World Health Organisation in the International Classification of Functioning, Disability and Health, 2001. Instruments to measure participation have been developed for children and adults, but none specifically for adolescents. Adolescence is a life stage with distinct patterns of participation, and previous research has shown that young people with disabilities have poorer participation than the general population. The aim of this study was to develop a measure of participation frequency, covering all major domains, for young people with cerebral palsy ( CP). CP was chosen as an exemplar because it is a significant cause of disability in young people, with affected individuals experiencing a range of different impairments of varying severity. Methods A pool of 88 items was developed using the published literature, existing measures and qualitative data from young people. The item pool was revised following expert review by 17 experts. Cognitive interviews on the items were carried out with 12 young people and 12 carers; field-testing was then undertaken with 107 young people with CP aged 13-21 years, and 540 young people from the general population to enable item reduction and to examine reliability and construct validity. Results The content review resulted in a 92-item draft questionnaire, content validity index of 93%. Cognitive interviews led to further wording changes. Following field-testing, the questionnaire was shortened to 45 items. Known-groups validity was demonstrated by correlation with impairment severity. Test-retest reliability was satisfactory for all domains. Internal consistency varied between domains. Conclusion This is the first instrument developed specifically to measure frequency of participation across multiple domains for young people with disability. Use of the questionnaire in research and clinical work will enable its properties to be better understood and its generalizability to wider groups to be clearer. [ABSTRACT FROM AUTHOR]

Objective The Child and Adolescent Scale of Participation ( CASP) parent report is a brief and valid measure for use with children and youth with chronic conditions/disabilities that has been shown to have good coverage at the chapter level of the ' Activities and Participation' component of the International Classification of Functioning, Disability and Health. The purpose of this research was to assess the psychometric properties of a CASP youth self-report version, to further validate the parent report, and to compare parent and youth reports of youths' activity and participation. Methods Baseline data from a longitudinal study examining predictors of changes in quality of life for youth with chronic conditions/disabilities were used. CASP data were collected on 409 youth aged 11-17 with various conditions/disabilities using youth and parent reports. Internal consistency and factor structure were examined for both versions using Cronbach's alpha and exploratory factor analyses. Inter-rater agreement and magnitude of differences between youth and parent report were evaluated using intraclass correlation coefficients and paired t-tests respectively. Gender, age and condition/disability group differences in youth report CASP scores were examined using independent t-tests or analyses of variance. Results Strong internal consistency and internal structure validity was demonstrated for the CASP youth and parent report. The youth report factor structure was similar to the parent report in this and other studies. Youth reported their activity/participation to be significantly higher than did their parents. Significant differences in CASP scores were found among condition/disability groups. Conclusions Findings show that, from a psychometric standpoint, the youth version of the CASP is a promising new self-report measure of activity and participation. As youth perceive their activity and participation levels differently than their parents, it is important to collect data from both sources to obtain a more comprehensive understanding of this aspect of youths' lives. [ABSTRACT FROM AUTHOR]

Résumé: Cet article présente une analyse du non-emploi parmi les mères d’enfant en situation de handicap en France. S’appuyant sur les données d’un registre du handicap et d’une enquête auprès de familles d’enfants avec une paralysie cérébrale, les relations entre le non-emploi et les caractéristiques de l’enfant et de la famille ont été étudiées. Les résultats montrent que le niveau d’études de la mère, la situation d’emploi du père et la présence d’une déficience intellectuelle sévère chez l’enfant sont les principaux déterminants du non-emploi de ces mères. La déficience intellectuelle semble réclamer plus de vigilance dans l’accompagnement quotidien. Dans les familles d’enfant présentant une déficience sévère, tout se passe comme si ces familles devaient s’occuper d’un enfant de moins de trois ans. Le non-emploi apparaît plus fréquent chez les mères d’enfant porteur d’une déficience sévère qu’en population générale. Mais la similitude des taux de non-emploi des mères pour les enfants avec paralysie cérébrale et pour la population générale suggère l’importance du niveau de déficience sur le non-emploi des mères. [Copyright &y& Elsevier]

Purpose: To examine geographical variation in the leisure participation of children/youth with cerebral palsy (CP), using Children's Assessment of Participation and Enjoyment (CAPE) data from Australia, Canada (Ontario and Quebec) and the US. Method: Data from 1076 children/youth ages 6-20 years with CP were included. Analyses examined CAPE diversity scores in activity types as a function of region, age group and Gross Motor Function Classification System (GMFCS) group, controlling for family income, education and child gender. Results: There were only two substantial geographical differences: children/youth from the US took part in the fewest active physical activities; those from Ontario took part in the most self-improvement activities. The youngest age group took part in the most recreational activities, and those in GMFCS level IV/V had the lowest levels of participation in recreational, active physical and self-improvement activities, confirming previous findings. Conclusions: There were more similarities than differences in participation patterns for the three countries. [ABSTRACT FROM AUTHOR]

Aim This article presents a four-part model of community-focused therapeutic recreation and life skills services for children's rehabilitation centres. Method and Results The model is based on 15 years of clinical and management practice in a Canadian context combined with evidence from the literature on community-focused service delivery. The model incorporates an ecological approach and principles from models of therapeutic recreation, community capacity building, and health promotion, as well as client/family-centred care. The four pillars of the model reflect a set of integrated services and principles designed to support the participation of children and youth with disabilities in community activities. The pillars involve providing community outreach services, providing community development services, sharing physical and educational resources with community partners, and promoting the organization as a community facility that provides adapted physical space and specialized instruction. The lessons learned in implementing the model are discussed, including the importance of ensuring the sustainability of community recreation programmes. Conclusions The model will be of use to managers and service organizations seeking to develop an integrated programme of community-focused therapeutic recreation and life skills services based on a collaborative capacity-building approach. [ABSTRACT FROM AUTHOR]

Background Children living with juvenile idiopathic arthritis (JIA) have swollen, painful and stiff joints, which may have an impact on all spheres of their life, as well as their family. While children diagnosed in their preschool years may be at risk for worse physical outcomes than children diagnosed later in life, it is not clear whether they have worse psychological outcomes and whether these outcomes have an impact on their everyday life. The aim of this study was to examine the association between age at diagnosis and health outcomes in families of children with JIA. Methods Parents of children with JIA ( n = 182) who attended rheumatology clinics at the Montreal Children's Hospital and British Columbia Children's Hospital completed measures assessing socio-demographic attributes, their child's health status, health-related quality of life and pain level, as well as their own level of psychological distress and coping behaviours. Regression models explored the association between age at diagnosis and health outcomes while adjusting for sex, age, severity and duration of the disease. Results Parents of children diagnosed with JIA before 5 years of age found their child to have a better health-related quality of life in terms of psychosocial functioning than parents of children diagnosed later [β = −0.91 (−1.63, −0.19)]. Children diagnosed younger were also found to be less limited in schoolwork or activities with friends because of emotional or behavioural problems than children diagnosed later [odds ratio = 0.07 (0.01, 0.42)]. Conclusions Children diagnosed younger seem to show good psychosocial adjustment, which may also be true for their caregivers. Perhaps more attention to psychosocial adjustment should be given to families of children who are diagnosed with the disease at an older age. [ABSTRACT FROM AUTHOR]

Self-efficacy - the belief in one's capability to cope with life's challenges and achieve goals - is an important service objective in family centered practice with parents of children with disability. Yet, limited attention has been given to parental self-efficacy and overall adjustment of families of children with a disability in the research literature. This study explores maternal general self-efficacy as a cognitive coping resource in these families. We employed longitudinal tracking over a 1-year period to examine maternal general self-efficacy as a predictor of family adjustment in households with children with serious disability. A computer assisted telephone survey gathered psychological, family, and demographic information from 154 mothers in AB, Canada. Hierarchical regression analysis indicated that even when controlling for family adjustment at time 1, as well as mother's age and parenting stress at time 2, general self-efficacy made an independent contribution to predicting family adjustment at time 2. [ABSTRACT FROM AUTHOR]