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

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

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

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

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

Background: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions., Aims: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery., Methods and Procedures: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis., Results: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized., Conclusions: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service., Competing Interests: Declaration of Competing Interest The authors have no conflict of interest to report., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0)., Methods: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis., Results: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling., Conclusions: This article identifies components of healthcare that families find helpful and desirable.

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

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

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

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

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

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

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