Landscape of healthcare transition services in Canada: a multi-method environmental scan

BACKGROUND: Poorly supported transitions from pediatric to adult healthcare can lead to negative health outcomes for youth and their families. To better understand the current landscape of healthcare transition care across Canada, the Canadian Health Hub in Transition (the "Transition Hub", established in 2019) identified a need to: (1) describe programs and services supporting the transition from pediatric to adult healthcare across Canada; and (2) identify strengths, barriers, and gaps affecting the provision of transition services. METHODS: Our project included two iterative steps: a national survey followed by a qualitative descriptive study. Service providers were recruited from the Transition Hub and invited to complete the survey and participate in the qualitative study. The survey was used to collect program information (e.g., setting, clinical population, program components), and semi-structured interviews were used to explore providers' perspectives on strengths, barriers, and gaps in transition services. Qualitative data were analyzed using the Framework Method. RESULTS: Fifty-one surveys were completed, describing 48 programs (22 pediatric, 19 bridging, and 7 adult) across 9 provinces. Almost half of the surveyed programs were in Ontario (44%) and most programs were based in hospital (65%) and outpatient settings (73%). There was wide variation in the ages served, with most programs focused on specific diagnostic groups. Qualitative findings from 23 interviews with service providers were organized into five topics: (1) measuring transition success; (2) program strengths; (3) barriers and gaps; (4) strategies for improvement; and (5) drivers for change. CONCLUSIONS: While national transition guidelines exist in Canada, there is wide variation in the way young people and their families are supported. A national strategy, backed by local leadership, is essential for instigating system change toward sustainable and universally accessible support for healthcare transition in Canada

Identifying children who are struggling in school

Abstract : Introduction : School-age children with motor coordination challenges typically require formal referral for occupational therapy services and often experience lengthy wait times for one-to-one intervention. In a new service delivery model called Partnering for Change, therapists work collaboratively with educators in classrooms to observe, identify, and support children. This study describes children identified through a traditional referral process and compares them with children identified by occupational therapists through classroom observation and dynamic performance analysis. Methods : Participants included 246 children enrolled in a 2-year evaluative study of the Partnering for Change service delivery. Parents completed a demographic questionnaire, the Developmental Coordination Disorder Questionnaire, and the Strengths and Difficulties Questionnaire. Children’s educators completed the Strengths and Difficulties Questionnaire and the School Function Assessment. Children completed the Movement Assessment Battery for Children. Results : Children identified were significantly younger and more likely to be girls than those referred under the traditional model. Using observation and dynamic performance analysis, occupational therapists identified children who had equally marked difficulties as those who came from the waitlist. In the Partnering for Change model, waitlists for service were eliminated for all children. Conclusions : Occupational therapists can identify children who are experiencing significant challenges participating at school without the need for standardized assessment, formal referrals, and waitlists

Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health

Background: Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course. Main text: From its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential. Conclusions: To meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research

Building a culture of engagement at a research centre for childhood disability

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done

Psychometric properties and parental reported utility of the 19-item ‘About My Child’ (AMC-19) measure

Abstract Background ‘About My Child’ 19-item version (AMC-19) is a parent-report measure developed to assess the complexity of a child’s life due to biological, psychological, social and environmental issues, that can be completed in approximately 5 min. AMC measures two dimensions of complexity: parental concerns and impact on the child. This paper examines the psychometric properties and parent-reported utility of the AMC-19 for children with disabilities or special health care needs. Method Data were gathered from two Canadian studies at CanChild: the ‘AMC-19 Pilot’ study and the ‘Service Utilization and Outcomes (SUO)’ study. The AMC-19 Pilot study data allowed us to explore internal consistency and test-retest reliability, as well as parental responses to two open-ended questions on the utility of the AMC-19. The SUO study provided data for analyses of internal consistency and scale property validation with type of diagnosis and service needs. Results The test-retest ICC was r = 0.83 for concerns and r = 0.87 for impact. Cronbach’s alpha across both studies ranged from 0.80 to 0.90. Parents’ comments on the AMC-19’s utility indicated support for the AMC-19, in particular to identify therapy needs and goals. Conclusions The AMC-19 demonstrates strong psychometric properties supporting it as a valuable measure for describing the level of complexity among children with disabilities. We recommend using the AMC-19 in health services research and clinical settings to build dialogue between family and therapists due to its utility reported by parents

Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health

Abstract Background Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course. Main text From its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential. Conclusions To meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research.Plain English summary In the last two decades there has been a clear commitment in Canada (and the world) to include patients and their families in health research—a process called patient-oriented research or as we refer to it—family engagement in research. In 2011, the Canadian Institutes of Health Research introduced the Strategy for Patient-Oriented Research to make this happen. To support POR in neurodevelopmental disability and child health, CanChild Centre for Childhood Disability Research teamed up with Kids Brain Health Network and McMaster Continuing Education. Together, a team of family caregivers and researchers co-created the Family Engagement in Research (FER) Course, a 10-week online course. The purpose of the FER Course is for researchers and family partners to learn about family engagement principles and how to use them in research. The course covers core areas in family engagement including how to find each other, how families and researchers can work together, and ways to overcome common challenges in research partnerships. The course uses online group sessions, discussion boards, and various resources such as research papers and videos. Through a group project, family partners and researchers collaborate to create a resource on family engagement. Completing the FER Course researchers and family members earn a McMaster University micro-credential and become part of a growing global community of FER Course graduates. Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners from 20 countries. The course has strengthened capacity in family engagement and is building a worldwide community of researchers, trainees, self-advocates, and family partners who are dedicated to improving neurodevelopmental disability and child health research through meaningful engagement

Correlates of Mental Health in Adolescents and Young Adults with Cerebral Palsy: A Cross-Sectional Analysis of the MyStory Project

Background: It is important to gain a better understanding of mental health issues in adolescents and young adults (AYA) with cerebral palsy (CP). In this cross-sectional study, we explore if demographics, social and clinical questionnaire scores, and cortisol levels in hair samples from AYA with CP are associated with higher scores on anxiety and/or depression questionnaires. Methods: Data from a community-based sample of 63 AYA with CP (30 females; ages 16 to 30 (median age of 25)) were analyzed. Forty-one (65%) participants (20 females) provided a hair sample. Outcomes were assessed using bivariate linear regression analyses and hierarchical regression analyses. Results: Clinical depressive and anxiety symptoms were present in 33% and 31% of participants, respectively. Family functioning, B = 9.62 (95%CI: 5.49–13.74), fatigue, B = 0.15 (95%CI: 0.05–0.25), and pain, B = 1.53 (95%CI: 0.48–2.58) were statistically significant predictors of depressive symptoms. Fatigue, B = 0.24 (95%CI: 0.12–0.35) and pain, B = 1.63 (95%CI: 0.33–2.94) were statistically significant predictors of anxiety. Cortisol levels from hair samples were not found to be associated with depressive symptoms or anxiety. Conclusions: A high prevalence of mental health problems and co-occurring physical problems was found in AYA with CP. Integrating mental support into regular care for AYA with CP is recommended