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Introduction: In Australia, children with cerebral palsy and complex disability receive funded supports through the National Disability Insurance Scheme (NDIS). This individualised funding scheme requires parents to navigate and advocate on behalf of their child, supported by expert reports, recommendations, and allied health services. Supports aim to enable participation in all areas of daily life, which may be otherwise largely inaccessible to children with complex disability and their families. This study aimed to explore the experiences of families of children with complex disability after 3 years accessing the NDIS. Methods: A qualitative research design with a demographic questionnaire and in‐depth interview was undertaken. Purposive sampling was used to recruit participants from one organisation providing occupational therapy and other allied health services. Data analysis implemented Braun and Clarke's thematic approach to examine the experiences of participants. Consumer and Community Involvement: This research was conducted with a registered National Disability Insurance Scheme provider to give voice to parent consumers who raise children with complex disability. Findings: Seven mothers and one father (N = 8) of children with complex disability were interviewed. Most parents reported increased success and satisfaction navigating the scheme. Five overall themes were generated from the data: pivotal roles of families, parental empowerment, life‐changing equipment, the fallibility of the scheme, and a critical scheme. Conclusion: Parents reported reliance on the scheme for their child's basic daily care and a more enriched life for their child and family. Parents were grateful for the scheme but experienced inconsistencies, navigation difficulties, and variable choice and control. Most parents had fears about the sustainability of the scheme, translating into uncertainty about their child's future. Allied health professionals, including occupational therapists, are key advocates for children with complex disability and their families. Collaboration through sharing knowledge and skills to support children, their families, and carers is key to empowering parents to navigate the NDIS. PLAIN LANGUAGE SUMMARY The National Disability Insurance Scheme (NDIS) provides funding for people with permanent and significant disability. Children with cerebral palsy (and other complex disability) are lifetime users of the NDIS. For children with complex disability, their families are crucial to ensuring that their daily needs are being met, including providing medication. Previous research indicated that parents rely on the NDIS to support their children; however, there have been various challenges such as long wait times for equipment and difficulty understanding how to use the scheme. This study explored the experiences of families of children with complex disability, after more than 3 years of being an NDIS participant. Eight parents from one therapy service provider completed a short questionnaire about themselves, their child, and their family, followed by an interview with the first author. Four authors (occupational therapists) worked together to design and implement this study. The findings highlighted several key points: the important role of parents as caregivers; parents became more knowledgeable and confident to navigate the NDIS with time; equipment funded by the NDIS was life‐changing; the NDIS has ongoing issues; and the crucial nature of the NDIS. Occupational therapists can be extremely important to families, including with supporting families to navigate the NDIS and advocating for them. Occupational therapists must stay current with their knowledge of the NDIS as they provide lifetime support, including prescribing equipment, technology, and home modifications. [ABSTRACT FROM AUTHOR]

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. [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. [ABSTRACT FROM AUTHOR]

Purpose: This study describes the development of four age-based item code sets from WHO's International classification of functioning disability and health, children and youth version (ICF-CY). Given the continuing goal of universal implementation of the ICF-CY, a reduced set of codes was identified from more than 1600 codes to facilitate the use of the classification for clinical, research and policy applications of the ICF-CY Methods: The ICF-CY developmental code sets were developed by consensus using the Delphi method. A multi-disciplinary group of international experts representing 27 countries from 5 WHO world regions completed a series of iterative online surveys to rate categories of child functioning essential for inclusion in the respective age-based code set. Results: Four age-based code sets covering 37, 52, 60 and 57 codes across four domains of the ICF-CY were successfully derived with a high level of participant consensus. The code sets align with developmental theory and represent essential indicators of functioning defining key stages of child development. Conclusion: The ICF-CY developmental code sets offer a common, universal language of childhood functioning and disability with global application for multidisciplinary research, clinical practice and policy. IMPLICATIONS FOR REHABILITATION: Broad umbrella terms, such as children with disabilities, neurodiversity and neurodevelopmental disabilities are widely used in the literature but not defined in a consistent, universal language. Codes from the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) offer a universal language of health and functioning. ICF-CY item codes were developed by consensus for four age groups of children, providing a universal language of disability for: epidemiological studies of disability prevalence screening and assessment tools documenting intervention goals and outcomes [ABSTRACT FROM AUTHOR]

Aim: Studies have demonstrated that family centeredness, or family involvement in decision-making and care provision, is crucial for achieving the best results in pediatric rehabilitation and is also directly associated to parental/caregiver satisfaction with rehabilitation services. This study aimed to explore the potential determinants of parents'/caregivers' satisfaction with rehabilitation services based on the various elements of family centeredness. Material and Method: Authors included the parents/caregivers of 120 children with physical disabilities aged 5-18 years (mean 10.14 years, SD 4.17). The Measure Process of Care-20 (MPOC-20) was used to assess parents'/caregivers' perceptions of the family centeredness in provision of rehabilitation services and therefore parental/caregiver satisfaction with rehabilitation service delivery to children. Results: Service-related and child-related factors accounted for 78% and 67% of the variances in the parents'/caregivers' satisfaction with being provided opportunities for them to make decisions about rehabilitation services (MPOC-20-Enabling and Partnership subscale), respectively. Parental/caregiver satisfaction with service delivery in the context of sharing information about child's progress was correlated with service-related, child-related, and parent/caregiver-related factors (adjusted R2=0.75, 0.71, and 0.68, respectively). Satisfaction with service delivery regarding coordinated and comprehensive care was significantly influenced by the service provider and the parent/caregiver-related variables (R2=0.63 and R2=0.59, respectively). Finally, in the event of satisfaction with services in terms of respectful and supportive care, each factor accounted for a small and approximately equal amount of variance in the mean score of relevant MPOC-20 subdomain (range of adjusted R2=0.10-0.18). Conclusion: Factors or determinants identified in the current study as having the potential to increase parents'/caregivers' satisfaction with rehabilitation services should be considered when providing rehabilitation services. [ABSTRACT FROM AUTHOR]

Childhood cancers are increasingly recognised as disorders of tissue growth and development, through early life into adulthood. A rising proportion are currently considered to be related to a familial predisposition or associated with identified genetic mutations in predisposition genes. Their threat to life and risk of associated serious disability at diagnosis and need for complex life saving therapies makes them a research priority. Inadequate progress has been made in diagnosing childhood cancers earlier within global health systems, which means that their clinical presentations are either missed altogether or constitute high risk emergencies. Whilst knowledge of tumour biology has improved dramatically over the last decade due to the expansion in research technologies directed at innovative approaches to prognostication and treatment. A concerted research initiative to apply this knowledge to making the diagnosis of childhood cancers at earlier points in tumourgenesis has not developed. The risk for a child getting a cancer by the age of 5 is equivalent to the risks of the conditions selected as part of newborn population screening for rare inherited health conditions and is nearly 3 times that at age 18 years. We are proposing that research directed at accelerating cancer diagnosis for children by focussing upon feasibility and acceptability of linking targeted surveillance with population screening for all childhood cancers. This would be supported by enhanced public and professional awareness of a child’s risks of cancer and the range of clinical presentations. We suggest this must now be a top priority for research because of the potential for improving outcomes for treatment of all types of cancer and reducing the burden of disability and late effects of therapy.

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. Lack of collaboration between the community and health services may lead to entrenched pessimistic views of what can be done to support children with disabilities - generating a greater mistrust and low parental take-up of vital health services. If parents do not receive help at the community and clinic level, then, there is a need to move away from trying to provide a 'specific diagnosis' to working more on a level of assessing the child's functioning in terms of what their limitations are and how they can be addressed. Any identification and referral programme needs to consider the varying local beliefs, the stigma of having a child with a disability and feelings of blame, right from the start. A stepwise, incremental approaches, ranging from the provision of basic information, such as using brief materials highlighting 'red flag' milestones and conditions which are linked to guidance for support to families, community health workers, as well as higher levels of medical services, are likely to work best. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONTo explore the impact of the online ENVISAGE program for parents of children with neurodevelopmental disabilities (NDD) on parents’ perception of themself, their child with a disability, and their family, as well as to explore experiences of participating in the program in Croatia.In this before-after discourse analysis study, participants took part in the five-week ENVISAGE program. There were two semi-structured interviews for each participant: within one month before and after participating in the program. The proportions of positive, neutral, and negative sentences about themself, their child, and their family from two interviews were compared on an individual and group level. The perceived changes and experiences with the program were also analyzed qualitatively.Data from thirteen participants were included. From the three pre-determined discourse categories (self, child, and family), most changes were observed in parents’ perception of self (average increase in positive views of 8.8% and decrease in negative of 5.3%). Qualitative results showed multiple positive self-perceived impacts on parents’ lives. Participants’ experiences with ENVISAGE were consistently positive; all believed they benefited from the program.The results support our assumption that participation in ENVISAGE positively affects multiple areas of life, particularly parents’ views of themself.ENVISAGE is an online, 5-week empowerment program for parents of children with neurodevelopmental disabilities that was tested for the first time in Croatia in this study.Results show that ENVISAGE mostly led to the improvements in the perception of self and their child with a disability.For all parents, ENVISAGE was a positive experience and a program they would recommend to other parents.ENVISAGE is an online, 5-week empowerment program for parents of children with neurodevelopmental disabilities that was tested for the first time in Croatia in this study.Results show that ENVISAGE mostly led to the improvements in the perception of self and their child with a disability.For all parents, ENVISAGE was a positive experience and a program they would recommend to other parents. [ABSTRACT FROM AUTHOR]

Introduction: To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities. Methods: A protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched. Results: Eight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined a priori or a posteriori in any of the included studies. The concept of selfcompassion was explicitly defined only for parents of youth with childhoodonset disabilities in three studies a priori. The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt. Discussion: There is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers. [ABSTRACT FROM AUTHOR]

Purpose: To strengthen the translation of evidence to actionable policy, stakeholder engagement is necessary to synthesize, prioritize and contextualize the academic research content into accessible language. In this manuscript we describe a multi-level evidence-based stakeholder consultation process and related outcomes proposed to promote awareness of and foster cross-sectorial collaborations towards human rights-based approaches for children with disabilities. Methods: Mixed-methods participatory action research done in three steps: (1) A literature review of peer-reviewed evidence on rights-based approaches in childhood disabilities; (2) Consultation with researchers in diverse fields, grassroot organizations, caregivers, and youth with disabilities; (3) A constructive dialogue with decision makers at federal and provincial levels in Canada to discuss consultations results. Results: Stakeholders value human rights approaches that can have a direct impact on practical aspects of their daily living. Organizations give high importance to adopting rights-based approaches to measure policy outcomes, while parents value service provision and youth emphasize accessibility. Conclusion: The implementation of rights-based approaches in childhood disabilities can support policy, services, and daily lives of children with disabilities and the ecosystems around them. It can also guide research priorities, and create a common language to foster collaborations across sectors and interested parties. [ABSTRACT FROM AUTHOR]

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality. [ABSTRACT FROM AUTHOR]

Background: There exists a dearth of research on the psychological experiences of childhood communication disorders. Caregivers of these children are one source who can provide us with this information since the child exists within a system. Literature on the experiences of caregivers of children with communication disorders, specifically in the South African city context, is lacking. Objectives: The article presents the reported experiences of six parental caregivers raising a child with a communication disorder within Johannesburg. Method: Data were collected via semi-structured interviews and underwent an interpretative phenomenological analysis. Results: Five themes are presented: feeling out of control; barriers to accessing services; caregivers left speechless; a misunderstood disability; and relinquishing control: ‘I needed to be a mommy’. Conclusion: The caregivers relayed an initially negative experience in raising a child with a communication disorder, marred with worry and fear for the future. In accessing services, they narrated their experiences of multiple barriers to access, including an overreliance on the private sector, financial barriers, time constraints, limited resources and poor information on available resources. Eventually, the caregivers were able to identify strengths, skills and capabilities within their children and themselves that allowed for adjustment and coping. Contribution: The findings highlight the importance of considering how barriers to care may marginalise and seclude parental caregivers. Over time, the caregivers were able to empower themselves through building their own knowledge and reformulating their narratives by challenging assumptions and retitling the source of disability as a product of the failure of society.

IntroductionTo examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities.MethodsA protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched.ResultsEight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined a priori or a posteriori in any of the included studies. The concept of self-compassion was explicitly defined only for parents of youth with childhood-onset disabilities in three studies a priori. The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt.DiscussionThere is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers.Systematic review registrationhttps://doi.org/10.17605/OSF.IO/2GRB4.

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.

This study examined the relationship between having a child with a disability or developmental delay and early impacts of the COVID-19 pandemic on family environments that influenced early childhood development and health in the Maritime provinces of Canada. This was a mixed method cross-sectional survey involving 256 primary caregivers of children with disabilities or developmental delays and 1720 primary caregivers of typically developing children aged 0–8 years. A Family access to resources and social support, parenting Abilities and self-care, and home Routines and Environments change scale (FARE Change Scale) was produced from the survey to assess the early impacts of the pandemic on family environments that influenced early childhood development and health. Open-ended questions provided in-depth description of the early impacts of the pandemic on family environments. Pooled bivariate and multivariate regression coefficients revealed that having a child with a disability or developmental delay significantly decreased a caregiver's score on the FARE Change Scale by 1.95. The open-ended questions were thematically analyzed. Caregivers of children with disabilities or developmental delays discussed positive and negative impacts of the pandemic on their family environments. Overall, the study findings indicate that the early impacts of the pandemic on family environments that influenced early childhood development and health of children with disabilities or developmental delays were mixed and context-specific. The study findings inform the development of context-specific policies and programs to adequately support families of children with disabilities or developmental delays in public health crises similar to the pandemic. Highlights: Early impacts of the pandemic on families of children with disabilities or developmental delays in the Maritime provinces of Canada were mixed and context-specific. Measures to mitigate public health crises similar to the pandemic should take into consideration the needs of families of children with disabilities or developmental delays. Positive experiences associated with the pandemic discussed by some families in our study offer important directions to adequately address some unmet needs that families experienced before the pandemic into the future. [ABSTRACT FROM AUTHOR]

Objective To know the status of childhood disabilities among middle 一 aged and old people in China and its influence, and to provide basis for prevention and rehabilitation of childhood disability. Methods The data were from the China Health and Retirement Longitudinal Study. The middle - aged and old people who participated in the baseline survey in 2011 and the newly visited middle - aged and old people who were included in the follow - up in 2013, 2015 and 2018 were selected as the research objects. The disability rate during their childhood was described, and the difference of education level, marriage, daily living ability between disability during childhood and adult were analysed. Results Among the middle - aged and old people in China, the childhood disability rate was 20. 36%q, and the rates of physical disability, intellectual disability, visual disability, hearing disability and speech disability were 8. 47%q, 4. 36%q, 3. 57%q, 5. 58%q, and 2. 01%°, respectively. The number of childhood disabilities accounted for 12. 2% of the total number of disabled people in the middle 一 aged and elderly. Among the people with disabilities in the childhood period, the proportion of males was higher than females, accounting for 54. 1%. Most of the disabled people in the childhood period are from 0 to 6 years old, accounting for 58. 2% of the disabled people from 0 to 17 years old. Compared with those with disabilities during childhood, those with disabilities in adulthood, with physical, intellectual, hearing, and speech disabilities had a higher proportion of impaired ADL in middle and old age. Those with visual, hearing, and speech disabilities in adulthood had a higher proportion of depressive symptoms in middle and old age. The differences were statistically significant by 2 test（P <0. 05）. Conclusion About 2% of the middle 一 aged and elderly people in China suffer from disability during their childhood. The impact of childhood disability runs through the whole life cycle. It is of great significance to take active prevention and rehabilitation measures for the childhood disabilities. [ABSTRACT FROM AUTHOR]

Background: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. Objective: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). Methods: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). Results: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. Conclusions: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities. [ABSTRACT FROM AUTHOR]

Purpose: To develop the Family Needs Questionnaire—Pediatric Rehabilitation (FNQ‐PR) version and evaluate the reliability and concurrent validity of this self‐report measure for caregivers of children with disabilities who receive pediatric rehabilitation services. Materials/Methods: The 39‐item FNQ‐PR was developed through a modified Delphi Technique. For test–retest evaluation, parents completed the FNQ‐PR twice through an online REDCap survey, 1–3 weeks apart. Concurrent validity data (parent‐report Impact on Family Scale [IFS‐15] and Measure of Processes of Care [MPOC‐20]) were collected at baseline. Reliability analyses included ICCs (95%CI) and internal consistency evaluation. Results: Twenty‐five caregivers of children ages 2–18 years (mean age 12.2 years) with a disability completed the FNQ‐PR at baseline, and 21 completed the retest. FNQ‐PR total score demonstrated excellent test–retest reliability (ICC = 0.84); internal consistency was high. The FNQ‐PR total score was strongly negatively associated with IFS‐15 total score (r = −0.62) and showed fair to strong association with MPOC subscale scores (0.45 ≤ r ≤ 0.70). Participants did not identify issues with the online format or FNQ‐PR item rating. Conclusions: The FNQ‐PR demonstrated excellent overall reliability and strong evidence of validity. It fills a gap in clinical care of families of children with disabilities, providing a systematic way for families to identify the extent to which their needs are perceived to have been met. Clinicians can use this tool to target unmet needs that are most important to families. FNQ‐PR use in future research will support exploration of the impact of specific child and family factors on family needs. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic and response changed clinical service delivery and practice for speech and language therapists (SLTs) in the United Kingdom. SLTs work with children with neurodisability regarding both difficulties with their communication and eating and drinking skills (oropharyngeal dysphagia). This survey aimed to specifically explore the impact of the COVID‐19 pandemic on SLT practice for school‐aged children with dysphagia. Methods: UK‐based SLTs working with school‐aged children with neurodisability and oropharyngeal dysphagia were recruited to share their perceptions on the impact of COVID‐19 on practice. Four questions focusing on COVID‐19 impact were part of a larger online survey exploring SLT clinical practice regarding mealtime management of children with neurodisability and oropharyngeal dysphagia, which included demographic information, service delivery, assessment and intervention practices. COVID‐19 impact questions were a mixture of multiple choice and free text responses. The survey was disseminated using professional networks and social media, between 14 May and 30 July 2021. Data were analysed using descriptive statistics and qualitative content analysis. Results: One hundred and two participants answered at least one of the four COVID‐19 questions. Eighty‐two per cent of SLTs either agreed or strongly agreed that COVID‐19 impacted on service delivery to children and families. Negative impacts on service delivery included school absences/closures, home visiting restrictions, families declining input and/or having barriers to telehealth use and the impact of mask wearing on interactions. Positive impacts included increased telehealth access and skills, increased contact with families and focus on children's eating and drinking function within the home environment. Participants aimed to maintain the increased contact with families alongside a hybrid service delivery approach of in‐person and virtual appointments. Conclusions: This survey provides novel information capturing SLT practice change across two waves of COVID‐19 and return to in‐person practice for UK children with neurodisability. [ABSTRACT FROM AUTHOR]

Introduction: Prior to the COVID-19 pandemic, children's therapy appointments provided by Ontario's publicly-funded Children's Treatment Centre (CTCs) primarily occurred in-person. With COVID-19 restrictions, CTCs offered services via telerehabilitation (e.g., video, phone), which remains a part of service delivery. CTC data shows that families experience barriers in attending telerehabilitation appointments and may need supports in place to ensure service accessibility. Our study aimed to co-design innovative solutions to enhance access and engagement in ambulatory pediatric telerehabilitation services. This manuscript reports the co-design process and findings related to solution development. Methods: This research project used an experience based co-design (EBCD) approach, where caregivers, clinicians and CTC management worked together to improve experience with telerehabilitation services. Interview data were collected from 27 caregivers and 27 clinicians to gain an in-depth understanding of their barriers and successes with telerehabilitation. Next, 4 interactive codesign meetings were held with caregivers, clinicians and CTC management to address priorities identified during the interviews. Using qualitative content analysis, data from the interviews and co-design meetings were analyzed and findings related to the solutions developed are presented. Findings: Four topics were identified from the interview data that were selected as focii for the co-design meetings. Findings from the co-design meetings emphasized the importance of communication, consistency and connection (the 3C's) in experiences with telerehabilitation. The 3C's are represented in the co-designed solutions aimed at changing organizational processes and generating tools and resources for telerehabilitation services. Discussion: The 3C's influence experiences with telerehabilitation services. By enhancing the experience with telerehabilitation, families will encounter fewer barriers to accessing and engaging in this service delivery model. [ABSTRACT FROM AUTHOR]

Background: Historically, in South Africa (SA), single motherhood has been part of the landscape and continues to increase. Disability in children is also increasing, yet it remains under-researched. Mothers are often left to raise their children with a disability alone, yet their voiced maternal experiences continue to largely be unheard, particularly in SA. Objectives: This study aimed to explore the lived experiences of single mothers raising a child with a disability in SA. Furthermore, the aim was to explore how these mothers navigate their complex realities and practice of mothering, and to amplify the voices of mothers. Finally, the study sought to shed light on the particular contextual factors that affect single maternal experiences in caring for a child with a disability. Method: Twelve South African single mothers raising a child with a disability between the ages of 7 years and 18 years were individually interviewed in this exploratory interpretivist study. Thematic analysis was utilised on the data. Results: The four themes highlight the complex, multi-level strain of raising a child with a disability, which has had a significant impact on the social, financial and emotional facets of single mothers' lives. Conclusion and contribution: The findings of the study are important for developing a thorough understanding of the needs of single mothers in this specific context as well as their daily experiences as mothers of children with disabilities. These needs include the necessity of psychosocial support and equipping single mothers with accurate knowledge about their child's disability so that they can make better accommodations for themselves and their child. [ABSTRACT FROM AUTHOR]

Abstract Background In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation. Methods The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation. Results Sixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants’ knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use. Conclusions The simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions.

Abstract There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research partnerships; however, less is known about the benefits of, and challenges to, engaging organizations as partners in research. The purpose of this commentary is to reflect on successful organizational partnership experiences from the perspectives of researchers at an internationally-recognized childhood disability research centre (CanChild), and to identify and share key ingredients for developing partnerships between organizations and academic institutions. A companion study is underway to examine partnership experiences with CanChild from the partners’ perspective. Four CanChild researchers and two co-facilitators participated in a collaborative auto-ethnography approach to share experiences with organizational research partnerships and to reflect, interpret, and synthesize common themes and lessons learned. The researchers and facilitators met virtually via Zoom for 105 min. Researchers were asked to discuss the following: the formation of their organizational partnerships; if/how partnerships evolved over time; if/how partnerships were sustained; and lessons learned about benefits and challenges to building research partnerships with organizations. The meeting was recorded, transcribed verbatim, and analyzed by the facilitators to identify and synthesize common experiences and reflections. Multiple rounds of asynchronous reflection and feedback supported refinement of the final set of analytic themes. Researchers agreed that partnerships with organizations should be formed through a mutual interest, and that partnerships evolved by branching to include new organizations and researchers, while also involving trainees. Researchers identified the importance of defining roles and responsibilities of key individuals within each partnering group to sustain the partnership. Lessons learned from organizational partnerships included reciprocity between the partnering organization and academic institution, leveraging small pockets of funds to sustain a partnership over time, and building a strong rapport with individuals in a partnership. This commentary summarized lessons-learned and provided recommendations for researchers and organizations to consider when forming, growing, and sustaining research partnerships over time.

IntroductionPrior to the COVID-19 pandemic, children's therapy appointments provided by Ontario's publicly-funded Children's Treatment Centre (CTCs) primarily occurred in-person. With COVID-19 restrictions, CTCs offered services via telerehabilitation (e.g., video, phone), which remains a part of service delivery. CTC data shows that families experience barriers in attending telerehabilitation appointments and may need supports in place to ensure service accessibility. Our study aimed to co-design innovative solutions to enhance access and engagement in ambulatory pediatric telerehabilitation services. This manuscript reports the co-design process and findings related to solution development.MethodsThis research project used an experience based co-design (EBCD) approach, where caregivers, clinicians and CTC management worked together to improve experience with telerehabilitation services. Interview data were collected from 27 caregivers and 27 clinicians to gain an in-depth understanding of their barriers and successes with telerehabilitation. Next, 4 interactive co-design meetings were held with caregivers, clinicians and CTC management to address priorities identified during the interviews. Using qualitative content analysis, data from the interviews and co-design meetings were analyzed and findings related to the solutions developed are presented.FindingsFour topics were identified from the interview data that were selected as focii for the co-design meetings. Findings from the co-design meetings emphasized the importance of communication, consistency and connection (the 3C's) in experiences with telerehabilitation. The 3C's are represented in the co-designed solutions aimed at changing organizational processes and generating tools and resources for telerehabilitation services.DiscussionThe 3C's influence experiences with telerehabilitation services. By enhancing the experience with telerehabilitation, families will encounter fewer barriers to accessing and engaging in this service delivery model.

This commentary examines the provisions for early childhood development (ECD) in the global action plan for rehabilitation published by the World Health Organisation (WHO) within the context of the United Nations' Sustainable Development Goal (SDG) for inclusive education. The meeting reports of the WHO Rehabilitation 2030 for 2017 and 2019 and the related documents were reviewed along with ECD policy documents from WHO, UNICEF, UNESCO, and the World Bank. The importance of a life-course approach to rehabilitation for the health and wellbeing of persons with disabilities was highlighted in the Rehabilitation 2030. However, the critical and foundational role of rehabilitation in ECD for children with disabilities to facilitate inclusive education, especially in low- and middle-income countries as envisioned by the SDG 4.2, was not clearly addressed. Children under 5 years with developmental delays and disabilities who are not developmentally on track in health and psychosocial wellbeing require timely rehabilitation to ensure that they benefit from inclusive education. The culture and practice of rehabilitation should be nurtured from infancy as an indispensable component of ECD to adequately prepare children with developmental disabilities for inclusive education and ensure effective rehabilitation services over the life course. Rehabilitation is an integral and critical component of early childhood development to optimise school readiness for children with developmental disabilities. Routine newborn screening, developmental assessment, and surveillance of children from birth are foundational to any effective rehabilitation in early childhood. Global investment to promote and support rehabilitation services from early childhood within the health systems and across all levels of service delivery including community settings is warranted to achieve the sustainable development goals for children with disabilities. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems. Objective: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies. Method: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic. Findings: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID‐19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID‐19 restrictions by advocating for families and managing uncertainties. Recommendations Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies. [ABSTRACT FROM AUTHOR]

Purpose: The study assessed the relationship between the level of disability amongst school-aged children with Down Syndrome and overall caregiver burden, and the potential moderating effects of social support and external service access on the caregiver/child relationship in Sri Lanka. Method: Caregivers were recruited to complete the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) assessment, the Caregiver Difficulties Scale (CDS), and to answer questions regarding resource use. A subset of 15 surveyed caregivers were also invited to participate in semi- structured interviews. Regression analyses were used to investigate the impact of resource usage on the association between level of disability and caregiver burden. Results: Lower perceived levels of child disability were related to less caregiver burden. Thirty-seven percent of caregivers reported receiving assistance from external sources. The relationship between the child's level of disability and caregiver burden was attenuated by family support for caregiving and by school attendance in a general class in a mainstream public primary school. Conclusion: External sources of support reduce caregiver burden but may not be available to many caregivers. [ABSTRACT FROM AUTHOR]

Duchenne muscular dystrophy (DMD) is a severe, progressive and incurable X-linked genetic disorder. The article presents 18 children with DMD admitted between 2016-2022 in the Pediatric Clinic II, Emergency County Hospital in Craiova. The study looked at: the distribution according to residence, the average age when they walked, when they were diagnosed and when they walked in a wheelchair, heredocollateral and pathological antecedents, clinical manifestations, nutritional status, genetic tests and the evolution of these patients.

Abstract 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.

There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research partnerships; however, less is known about the benefits of, and challenges to, engaging organizations as partners in research. The purpose of this commentary is to reflect on successful organizational partnership experiences from the perspectives of researchers at an internationally-recognized childhood disability research centre (CanChild), and to identify and share key ingredients for developing partnerships between organizations and academic institutions. A companion study is underway to examine partnership experiences with CanChild from the partners' perspective. Four CanChild researchers and two co-facilitators participated in a collaborative auto-ethnography approach to share experiences with organizational research partnerships and to reflect, interpret, and synthesize common themes and lessons learned. The researchers and facilitators met virtually via Zoom for 105 min. Researchers were asked to discuss the following: the formation of their organizational partnerships; if/how partnerships evolved over time; if/how partnerships were sustained; and lessons learned about benefits and challenges to building research partnerships with organizations. The meeting was recorded, transcribed verbatim, and analyzed by the facilitators to identify and synthesize common experiences and reflections. Multiple rounds of asynchronous reflection and feedback supported refinement of the final set of analytic themes. Researchers agreed that partnerships with organizations should be formed through a mutual interest, and that partnerships evolved by branching to include new organizations and researchers, while also involving trainees. Researchers identified the importance of defining roles and responsibilities of key individuals within each partnering group to sustain the partnership. Lessons learned from organizational partnerships included reciprocity between the partnering organization and academic institution, leveraging small pockets of funds to sustain a partnership over time, and building a strong rapport with individuals in a partnership. This commentary summarized lessons-learned and provided recommendations for researchers and organizations to consider when forming, growing, and sustaining research partnerships over time. Plain English summary: Researchers and people who use research findings are partnering to create research projects and share results. There are examples of children with disabilities and their families participating in research partnerships, but less is known about the involvement of healthcare organizations and community organizations as research partners. The purpose of this article is to share successful examples of partnership between organizations and a childhood disability research centre from the perspective of researchers. Four researchers and two facilitators met to reflect on their experiences with organizational research partnerships. They met online for 105 min using Zoom software. The researchers were asked to talk about how their partnerships with organizations were formed, how they grew over time, and how they were maintained. The meeting was recorded, and the facilitators took the researchers' experiences and summarized them into common messages. Everyone then read the summary on their own and added their ideas. This happened three different times until everyone agreed on one set of ideas. The researchers agreed that partnerships with organizations should be formed through common goals, that they should grow to include new partners and junior researchers, and that clear roles and responsibilities were needed to keep the partnership going. The experiences shared in this article are valuable to other researchers and organizations that are interested in forming research partnerships. [ABSTRACT FROM AUTHOR]

Background: In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation. Methods: The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation. Results: Sixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants' knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use. Conclusions: The simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions. Plain English summary: In 2019, our team of researchers, family members, and youth worked together to design and develop four digitally recorded simulation videos that can be used to train youth, caregivers/families, trainees, and researchers to engage with each other in research so that all parties feel supported and valued. This paper describes how the four simulation videos were packaged in the training and then delivered to 16 participants (researchers, trainees, and caregivers/families). We used multiple ways to evaluate the videos and training, including a survey before and after the training, focus groups with participants after the training, and written reflections shared by the training facilitators after the training was finished. We found that the simulation videos increased participants' knowledge on engagement and their self-reported ability to engage in authentic and meaningful patient-oriented research. Participants rated their belief in engagement and their intent to engage in collaborative research highly at the pre-test and this remained consistent at the post-test. Participants liked that the simulations focused on challenges in research engagement and that the training was offered to researchers and family partners together. They provided valuable feedback on what we should change about the simulations, including the content, which should have less exaggerated lessons and to add more topics. They also suggested it would be helpful if stakeholders other than just the research team complete the training in the future, especially those who are in higher positions of academic power. [ABSTRACT FROM AUTHOR]

Investigation of the perspectives of paediatric health care professionals (PHCPs) in Switzerland regarding factors that influence participation in physical activity programs for children and adolescents with disabilities or chronic conditions (CADCCs). Evaluation of self-reported exercise counselling behavior of those professionals. A cross-sectional survey was used to collect the opinions of 171 PHCPs working with CADCCs using a structured questionnaire. The information obtained was evaluated by performing a combined quantitative and qualitative statistical analysis. PHCPs in Switzerland think that CADCC do not get enough physical activity and see the underlying reasons in lacking information/knowledge and organizational factors. We found that the level of knowledge about disability sports opportunities among PHCPs has a positive influence on their exercise counselling behaviour. We propose three approaches to increase the level of physical activity in CADCC: Establishing personalized exercise counseling, intensifying information about disability sports programmes towards PHCPs, and improving inclusion and integration in PE lessons or regular sports clubs. [ABSTRACT FROM AUTHOR]

Plain English summary Researchers, patients, and families who collaborate in childhood disability research can benefit from training on how to engage with each other authentically and meaningfully, i.e., where all parties feel supported and valued. We used a codesign approach to identify aspects of the research process where challenges might arise between researchers, patients, and families and then developed four videos with scenarios that mimic these challenges. Codesign is a collaborative approach in which different perspectives and relationships are prioritized while working to achieve a common aim. First, researchers, youth with disabilities, families, and trainees each identified challenges they had previously experienced in research engagement and used those to create one common scenario as the premise of each video. In follow up interviews, we asked a subset (7 people) of those who took part (13 people) about their experience in the co-design process and about what it means to engage in research where all parties feel supported and valued. Participants said that being invited to partner on research teams needed to be more than just a ‘tick box’ and even when invited onto research teams, they often lacked ways to contribute in a way where they felt valued. Engagement felt like a ‘rubber stamp’ when they were asked to contribute in a narrow way that did not align with the fullness of their lived experience, skills, and interests. Clear communication and mutual expectations were important for engagement to happen in a way that felt supportive and valuable. We suggest that researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together.

Abstract Background Childhood disability remains a lowly prioritized and funded international health concern in the world today. Exacerbated by poverty, a lack of bureaucratic support, and societal discrimination, rehabilitation services are not readily accessible for Filipino families who happen to have a child with disability. This article intends to determine the perceived barriers of Filipino service users when it comes to accessing rehabilitation services for children with special needs in Cagayan de Oro City and to propose suggestions to improve the access to rehabilitation services from an international health perspective. Methods The study utilized the four‐phased Q methodology, a mixed‐method research design with an exploratory sequential approach: (1) creating and validating the Q‐sort statements, (2) Q‐sorting administration, (3) factor analysis, and (4) interpreting factors. Results After going through the four phases of Q methodology, the following factors, called “viewpoints” emerged: systemic discrimination based on differences in culture and ethnicity (Viewpoint 1), socioeconomic factors such as affordability and accessibility (Viewpoint 2), and predisposed health beliefs and lack of trust to health professionals (Viewpoint 3). Discussion Barriers to accessing rehabilitation services in the Philippines go beyond the lack of individual resources. These perceived barriers can be mitigated by employing participatory and collaborative approaches in developing rehabilitation programs for children and their families, viable strategies such as integrating telehealth in the rehabilitation process, and cultural competence in recognizing folkloric beliefs as a way to build trust toward health‐care professionals. Conclusion This article determined contextualized barriers when accessing health and rehabilitation services based on service users themselves, which in turn hopes to promote inclusive, justice‐oriented, and culturally focused rehabilitation services underpinned by international health principles.

Importance: The field of childhood disability has undergone a sea‐change in the past two decades. Remarkably, 70 years ago, the ideas now taking root were expressed with poignant clarity by Ireland's Christy Brown, providing lessons that were there to be learned, illustrating why 'My Left Foot' remains a singular contribution to the literature about child development and disability. Objective of this essay: The World Health Organization's 2001 reconsideration of 'disability' (the International Classification of Functioning, Disability and Health or ICF) has spawned considerable uptake and adaptation of contemporary concepts, notably with the 'F‐Words for Childhood Disability' (now the 'F‐words for Child Development'). Published in 1954, Christy Brown's ground‐breaking poetic autobiography 'My Left Foot' resonates today with messages that bring the ICF to life vividly and memorably. Review The author, a developmental paediatrician, has refracted the themes of 'My Left Foot' through an ICF lens to illustrate that concepts now considered modern have long been in plain sight, but sadly ignored. Christy Brown's first‐person narrative animates ideas and messages for all who work in the field of childhood disability. Findings This essay is a personal reflection that draws together both contemporary 21st century concepts and ideas from the time that Christy Brown was a young author reporting his perspectives and perceptions on living with 'disability'. Conclusions and Relevance: The lessons Christy Brown generously shared 70 years ago should be heeded today. In the context of modern thinking and action regarding 'childhood disability', we need an approach to all we do that sees and respects children with 'disabilities' as whole people, that situates them in the context of family and community, that identifies and promotes their strengths and aspirations within both the health professional community and the community at large and enables them to 'become' and to 'belong'. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Introduction: Due to the increased risk of obesity for boys with Duchenne muscular dystrophy (DMD), recent guidelines recommend that dietary intake is carefully managed. Parents play an important role in the development of their child's eating behaviours and patterns. However, despite what is known about the increased risk of obesity for children with DMD, little is known about parental feeding behaviours in this population. The objective of this study was to qualitatively explore the experiences of parents of children with DMD around their child's weight management and understand what influences their feeding behaviours. Methods: This paper reports a secondary data analysis. Semi‐structured, individual interviews were conducted and analysed using qualitative description. Results: Thirteen parents were interviewed for the study. Three themes were developed: (1) parent responses to healthcare provider interactions, (2) mixed emotions contributing to feeding approach and (3) variable parenting feeding styles. Within the third theme, two subthemes arose including (1) control and preoccupation and (2) striking a balance. Conclusion: Given the potential impact of higher weights on the progression of DMD, it is important that healthcare providers explore feeding behaviours with families. However, it is essential that healthcare providers consider the impact of these conversations on parents, as well as the broader issues that may place additional pressure on the lives of families. [ABSTRACT FROM AUTHOR]

BackgroundMental health concerns in children with disabilities are common and have a significant and negative impact. Clinicians have reported high demand for this population to receive early, targeted, and family-centred mental health interventions.ObjectiveWe sought to map out and describe existing pediatric mental health services/resources for children with disabilities and their families across clinical sites and local and online communities.MethodsUsing a mixed-method triangulation study design, we outreached to clinical managers at the participating clinical sites and conducted a rapid online search of local in-person, telehealth, and web-based information. The nature, access method, admission criteria, target, focus, and other pertinent information were recorded and analyzed using descriptive statistics and a narrative synthesis approach.ResultsEighty-one (n = 81) services/resources (in-person, n = 48; telehealth, n = 10; web-based information, n = 33) were identified. Few (n = 6, 13%) in-person services had a method of care access through an online booking portal. Nearly half of in-person resources (n = 23, 47%) had admission criteria specific for children with disabilities (e.g., diagnosis, age limit), and many (n = 32, 67%) required a formal referral. A small number of in-person and telehealth services targeted the mental health concerns of the entire family (n = 23, 47%; n = 2, 20%). Very few (n = 13, 16%) services incorporated follow-up support. Important gaps emerged for certain populations (e.g., children with cerebral palsy). Practitioners’ inadequate training when intervening with co-existing mental health demands of children with disabilities was noted by clinical managers.ConclusionFindings could be used to create a user-friendly database to easily identify suitable services and to advocate for services/resources that are lacking.

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. [ABSTRACT FROM AUTHOR]

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). 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. 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. 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. Using 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. [ABSTRACT FROM AUTHOR]

Fathers in families with childhood disability have an important role in fostering coping and resilience in children. Insight into men's thoughts about fathering is necessary to provide family-centered interventions. The purpose of this study was to explore men's experience of being a father in families with childhood disability. Qualitative interviews were conducted with seven fathers in families with childhood disability. Content analysis was applied to analyze the data. The participants described their thoughts about children's needs; mastery, secure attachment, clear boundaries, positive emotions, and role models. Creating a father-child unity, being active, playful, fearless, and sometimes restraint was described as fathering behaviors aiming to meet these needs. However, personal, family, and social factors were described as influencing fathers' behaviors. Fathers' psychological wellbeing was described to be affected by the childhood disability to different degrees, and emotional triggers related to the disability were described. Participants described using a variety of emotion regulation strategies, but somewhat restraint support seeking behavior. We conclude that the health and social welfare system should involve fathers in the provision of services to children, empower them in their role as fathers, and provide support tailored to their needs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This Australian study compared perspectives of family quality of life (FQOL) of parents of preschool children attending early childhood intervention services (ECIS) with parents of school‐aged children with disability. It examined the relationships between disability‐related services, parent occupations, and FQOL. Two mixed‐methods studies with 122 participants and 24 in‐depth interviews were conducted. The first study included 72 parents attending ECIS. The second study included 50 parents of school‐aged children with disability. The quantitative aspect (N = 122) used the Beach Center FQOL survey and a demographic questionnaire. Twelve semistructured interviews were conducted for each study. Spearmann's Rho correlations for quantitative data analysis and thematic analysis for qualitative data were used for each study. A two‐way analysis of variance along with a qualitative comparative analysis were conducted to compare the findings from both studies. Results indicated lower scores on FQOL in parents with school‐aged children when compared with the ECIS group. Loss of work, lack of time for caregiver health, lack of respite, and interim residential care had detrimental impacts on parents' long‐term well‐being. Based on the results, it can be concluded that the hardships and challenges of caregiving increase as the child gets older; however, positive adaptations, beliefs, and positive transformations help FQOL. Family‐centered care and supportive practitioners assist FQOL and are highly recommended. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]