Examining the impact and implementation of the ENabling VISions And Growing Expectations (ENVISAGE) program in Croatia: a discourse analysis pilot study.

PURPOSE: To 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Experiences of identifying pre-school children with disabilities in resource limited settings - an account from Malawi, Pakistan and Uganda.

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.

Understanding the need for pediatric neurodevelopmental services among households in western Kenya: A population-based study.

Introduction: Existing estimates of rates of childhood disability in Kenya are based on data with important limitations. Individual-level data on childhood disability at the local level is also lacking, leaving critical knowledge gaps for clinical and programmatic development. Objectives: We aimed to estimate the rates of children at-risk for disability, examine the external factors related to risk of childhood disability, and gain a better understanding of the challenges experienced by children at-risk for disabilities and their families within western Kenya. Methods: We conducted a small, cross-sectional randomized community survey to assess the rates of childhood disability across six administrative locations in Uasin Gishu County, Kenya, and to understand the experiences of these children and their caretakers. Results: Rate of childhood disability in Uasin Gishu county was estimated to be 5%, with the most common disabilities being mood disorders. Caretakers reported several barriers to accessing treatment for their children at-risk of having disabilities, including financial concerns and lack of transportation. Conclusions: Our findings suggest a need for improved access to care in this region, including addressing significant barriers to accessing care such as stigma and socioeconomic challenges. These community-level data will inform the development of future infrastructure and programming for this population.

The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme.

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.

Conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities: a scoping review.

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 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. 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. Systematic review registration: https://doi.org/10.17605/OSF.IO/2GRB4.

Evidence-informed stakeholder consultations to promote rights-based approaches for children with disabilities.

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.

What supports and services post COVID-19 do children with disabilities and their parents need and want, now and into the future?

Introduction: Children 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. Methods: This 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. Results: Families' 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. Discussion: Implications for policy and practice are outlined.

The lived experiences of play and the perspectives of disabled children and their parents surrounding brain-computer interfaces.

Brain-computer interfaces (BCI) offer promise to the play of children with significant physical impairments, as BCI technology can enable disabled children to control computer devices, toys, and robots using only their brain signals. However, there is little research on the unique needs of disabled children when it comes to BCI-enabled play. Thus, this paper explored the lived experiences of play for children with significant physical impairments and examined how BCI could potentially be implemented into disabled children's play experiences by applying a social model of childhood disability. Descriptive qualitative methodology was employed by conducting four semi-structured interviews with two children with significant physical impairments and their parents. We found that disabled children's play can be interpreted as passive or active depending on one's definition and perceptions surrounding play. Moreover, disabled children continue to face physical, economic, and technological barriers in their play, as well as play restrictions from physical impairments. We urge that future research should strive to directly hear from disabled children themselves, as their perspectives may differ from their parents' views. Also, future BCI development should strive to incorporate video games, recreational and entertainment applications/platforms, toys and switch-adapted toys, and power wheelchairs to better support the play of children with significant physical impairments.Implications for RehabilitationAssistive technology research should strive to examine the social, infrastructural, and environmental barriers that continue to disable and restrict participation for disabled children and their families through applying a social model of childhood disability and other holistic frameworks that look beyond individual factorsFuture research that examines the needs and lives of disabled children should strive to directly seek the opinions and perspectives of disabled children themselvesBrain-computer interface development should strive to incorporate video games, recreational and entertainment applications/platforms, toys and switch-adapted toys, and power wheelchairs to better support the play of children with significant physical impairments.

Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators.

BACKGROUND/OBJECTIVE: Infants who survive prematurity and other critical illnesses and require continued invasive mechanical ventilation (IMV) postdischarge (at home) are at high risk of developmental delays and disabilities. Studies of extremely preterm cohorts (<28-week gestation) demonstrate rates of 25% for intellectual disability (ID) and 7% for autism spectrum disorder (ASD). Rates of ASD and ID in children with IMV are unknown. This study aimed to determine neurodevelopmental disability risk in a cohort of children with postdischarge IMV. DESIGN/METHODS: A consecutive series of children with IMV were assessed 1 month, 6 months, and 1 year after discharge. Cognitive, social, and communicative domains were assessed by a Developmental and Behavioral Pediatrician using (1) clinical adaptive test/clinical linguistic and auditory milestone scale (CAT/CLAMS) of the capute scales; (2) pediatric evaluation of disability inventory computer adaptive test (PEDI-CAT); and (3) modified checklist for autism in toddlers, revised (MCHAT-R). Red flag signs and symptoms of ASD using DSM-V criteria were noted. Longitudinal testing was reviewed. Expert consensus impressions of evolving ASD and/or ID were determined. RESULTS: Eighteen children were followed for 1 year; at 1 year, the median age (range) was 23 (17-42) months. Children were 44% male, 33% non-Hispanic White, 39% non-Hispanic Black, and 28% Hispanic. Fifteen (83%) children were prematurity survivors. Median (range) developmental quotients (DQs): full-scale DQ 59 (11-86), CAT DQ 66.5 (8-96), and CLAMS DQ 49.5 (13-100). Twelve (67%) children were highly suspicious for ASD and/or evolving ID. CONCLUSIONS/SIGNIFICANCE: This cohort of children with at-home IMV demonstrates a higher risk of ASD and ID than prior premature cohorts. Larger investigations with longer follow-up are needed.

How can we reach long-lasting inclusive participation for all? A vision for the future.

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.

Health, Wellbeing and Empowerment E-workshops for Mothers of Children with Disabilities: A Non-randomised Comparison Study.

Mothers of children with disabilities can experience compromised health. Targeted interventions require investigation to determine effectiveness. Healthy Mothers Healthy Families (HMHF) is a health, wellbeing and empowerment program that addresses mothers need to protect, and or, recover their own health due to caregiving impacts. This study compared the effectiveness of HMHF e-workshops online compared to no intervention. The HMHF e-workshops were delivered to 290 mothers across the 2020-2022 Covid-19 pandemic and 172 participated in research. The HMHF e-workshops included 3 online 2- hour workshops facilitated by credentialled peer-facilitators, closed online group chat, e-workbook and online learning package. Participants in both groups completed surveys pre and post the workshops (or control) over 8-10 weeks. Mothers who participated in HMHF significantly increased health help seeking behaviours (p < .001), and improved mental health and health behaviors over time: health behavior (p < .001), positive wellbeing (p < .004) and depression (p < .001) and stress symptoms (p = .005). Compared to controls, HMHF e-workshop participants significantly improved health behaviours (p < .001) and self-reported symptoms of depression (p = .002) and stress (p = .005) over 8-10 weeks. E-workshops were accessible and effective for mothers of children with high care needs and family responsibilities across the COVID-19 pandemic. Compared to no intervention, the HMHF intervention was more effective for improving healthy behaviours and mental health.

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study.

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.

Defining childhood disability: ICF-CY developmental code sets.

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.

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 prevalencescreening and assessment toolsdocumenting intervention goals and outcomes.

Development and evaluation of the Family Needs Questionnaire for Pediatric Rehabilitation.

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.

Impact of COVID-19 on clinical practice of UK-based speech and language therapists working with school-aged children with neurodisability and oropharyngeal dysphagia: A survey.

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.

South African single mothers' experiences of raising a child with a disability.

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.

Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities.

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes 'child-centric', wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs.

Perspectives of Swiss Paediatric Health Care Professionals on Factors Influencing Physical Activity Participation in Children with Disabilities.

AIM: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.

Establishing and sustaining authentic organizational partnerships in childhood disability research: lessons learned.

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.

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.

Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research.

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.

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.