What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities.

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.Implications for RehabilitationFamily-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare.However, parents continue to experiences aspects of care that are not family-centred.Parents of children with disabilities identified components of care that they want from healthcare services.New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities.

BACKGROUND: Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18-25) with NDD to enhance their knowledge, confidence, and skills as research partners. Our secondary objective was to identify the benefits and challenges of engaging youth with NDD in a POR approach. METHODS: Our team of four youth and one parent with lived experience [Youth Engagement in Research (YER) partners] and six researchers engaged in POR to investigate the primary objective via two phases: (1) individual interviews with youth living with NDD and (2) a two-day virtual symposium with focus groups with youth and researchers. Collaborative qualitative content analysis was employed to synthesize the data. Our secondary objective was assessed by asking our YER partners to complete the Public and Patient Engagement Evaluation Tool (PPEET) survey and participate in reflective discussions. RESULTS: Phase 1 participants (n = 7) identified various barriers and facilitators to their engagement in research and offered suggestions to meet their needs through minimizing barriers and integrating facilitators, which would subsequently enhance their knowledge, confidence, and skills as research partners. Informed by phase 1, phase 2 participants (n = 17) prioritized the following POR training needs: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. For delivery methods, participants stated the importance of youth representation, using Universal Design for Learning, and co-learning between youth and researchers. Based on the PPEET data and subsequent discussions, YER partners agreed that they were able to express views freely, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, ensuring multiple methods for engagement, and working under short timelines. CONCLUSION: This study identified important training needs for youth with NDD and for researchers to engage in meaningful POR, which can subsequently inform the co-production of accessible training opportunities with and for youth.

Partnerships between researchers and youth, known as patient-oriented research (POR), are needed to make sure research is meaningful to youth. Our main goal was to explore the training needs of youth (ages 18-25) with neurodevelopmental disabilities (NDD) to enhance their knowledge, confidence, and skills as research partners. To find out, our team of four youth and one parent with lived experience (YER partners) and six researchers completed this project in two parts: 1) interviews with youth and 2) a two-day virtual workshop with youth and researchers. Data from the two parts were reviewed to answer our question. We learned from Part 1 that the needs of participants can be met by providing support and reducing barriers in POR. From Part 2, the top three important topics in partnerships were: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. Participants in the workshop emphasized having different youth represented, using a framework that allows learning for everyone, and co-learning between youth and researchers in the creation of learning materials. Our second goal was to understand the benefits and challenges of our partnership. To assess, YER partners completed a survey and reflected about their experiences. YER partners agreed on being able to express views, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, providing multiple ways to partner, and working under short timelines. Overall, the study described important POR needs for youth and researchers, which can inform future training opportunities.

Implementation of the C-BiLLT, an accessible instrument to assess language comprehension in children with limited motor and speech function: an international clinician survey.

This study assessed implementation of the Computer-based Instrument for Low-motor Language Testing (C-BiLLT). The C-BiLLT is an accessible language comprehension assessment tool originally developed for children with cerebral palsy and complex communication needs. The purpose of the current study was to understand the clinical contexts in which the C-BiLLT is used in the Netherlands, Belgium, and Norway and assess barriers and facilitators to implementation. An online survey was distributed to rehabilitation clinicians working in the Netherlands, Dutch-speaking parts of Belgium, and Norway. A total of 90 clinicians reported their training in and use of the C-BiLLT; assessed its acceptability, appropriateness, and feasibility; and commented on perceived barriers as well as advantages of the tool. Acceptability, appropriateness, and feasibility were all rated highly. The C-BiLLT was used with various populations and age groups but most often with children who were younger than 12 years of age, and those with cerebral palsy. The main implementation facilitator was clinicians' motivation; the main barriers were related to resources and complexity of cases. Findings suggest implementation of new assessment tools is an ongoing process that should be monitored following initial training, in order to understand clinical contexts in which the tools are being used.

Psychometric properties of the English language version of the C-BiLLT evaluated in typically developing Canadian children.

PURPOSE: This study aimed to 1) investigate the convergent and discriminant validity, internal consistency, and test-retest reliability of the Canadian English version of the Computer-Based instrument for Low motor Language Testing (C-BiLLT-CAN), and 2) explore feasibility of the C-BiLLT assessment for children with cerebral palsy (CP) and complex communication needs in the Canadian health care context. METHODS: Eighty typically developing children between 1.5 and 8.5 years of age completed the C-BiLLT-CAN, the Peabody Picture Vocabulary Test-IV (PPVT-4), the receptive language sub-test of the New Reynell Developmental Language Scales (NRDLS), and/or the Raven's 2. Correlations between raw scores were calculated for estimates of convergent and discriminant validity. Internal consistency was calculated for all items and separately for items pertaining to vocabulary and grammar. To calculate the standard error of measurement (SEM) and intraclass correlation coefficient (ICC), 33 participants were re-tested with the C-BiLLT within three weeks. Feasibility was explored with nine participants with CP. RESULTS: C-BiLLT-CAN's convergent validity was good to excellent (Spearman's rho > 0.78) and discriminant validity was higher than hypothesized (Spearman's rho > 0.8). Internal consistency (Cronbach's alpha = 0.96), test-retest reliability (ICC > 0.9), and measurement error (SEM < 5%) were excellent. The feasibility study could not be fully completed due to the COVID-19 pandemic. Preliminary data demonstrated some technical and practical barriers for using the C-BiLLT in children with CP in Canada. CONCLUSION: The C-BiLLT-CAN showed good to excellent psychometric properties in a sample of typically developing children, indicating that it is an adequate test for measuring language comprehension in English-speaking Canadian children. Further research is needed to investigate the feasibility of the C-BiLLT-CAN in children with CP.

A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada.

There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada. This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub. Together, we identified the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. In this perspective paper, we will report on a dialogue with key informants and make recommendations for change in healthcare transition policies at the healthcare/community, provincial and/or territorial, and/or national levels.

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.

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.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.

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

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.

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability.

BACKGROUND: Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. OBJECTIVE: Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. METHODS: The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. RESULTS: The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. CONCLUSIONS: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.

A Balanced Protocol for Return to School for Children and Youth Following Concussive Injury.

BACKGROUND: Few protocols exist for returning children/youth to school after concussion. Childhood concussion can significantly affect school performance, which is vital to social development, academic learning, and preparation for future roles. The goal of this knowledge translation research was to develop evidence based materials to inform physicians about pediatric concussion. METHODS: The Return to School (RTS) concussion protocol was developed following the National Institute for Health and Care Excellence procedures. RESULTS: Based on a scoping review, and stakeholder opinions, an RTS protocol was developed for children/youth. This unique protocol focuses on school adaptation in 4 main areas: (a) timetable/attendance, (b) curriculum, (c) environmental modifications, and (d) activity modifications. CONCLUSION: A balance of cognitive rest and timely return to school need to be considered for returning any student to school after a concussion. Implementation of these new recommendations may be an important tool in prevention of prolonged absence from school and academic failure while supporting brain recovery.

Post-concussion return to play and return to school guidelines for children and youth: a scoping methodology.

PURPOSE: The objective of this study was to identify and describe management strategies to ensure safe return to activity (RTA) and return to school (RTS) of children with mild traumatic brain injury (MTBI) and determine whether they are evidence-based. METHODS: A scoping methodology was conducted using research published between 1990 and 2013, gray literature and clinical expertise. Once the data had been charted, an expert panel of physicians and clinicians was consulted to inform and validate study findings. An analytical and thematic framework was used to examine the study findings. RESULTS: A total of 400 potentially relevant published articles, 100 websites and 24 iPad Applications were found. Ten articles and three web-based resources met inclusion criteria and were included in the final review. Nine articles recommended a more conservative approach to RTA, as well as identified a step-wise or severity-oriented approach. General recommendations were also found regarding safe RTS. One study recommended a stepwise RTS protocol for children. CONCLUSIONS: This scoping methodology determined that the most comprehensive guidelines for management are focused on adults. Evidence concerning prolonged recovery patterns in children and the impact of concussion on the developing brain suggests that pediatric-specific guidelines are needed for RTA and RTS after MTBI/concussion. IMPLICATIONS FOR REHABILITATION: Although concussion in children is an increasing concern, it has been determined that the most comprehensive guidelines for management are focused on adults. These guidelines are primarily consensus-based and are not proven fact through quality research. Evidence concerning prolonged recovery patterns in youth and the impact of concussion on the developing brain suggest that pediatric guidelines should be more conservative than for adults. Therefore, pediatric-specific guidelines need to be developed for return to activity and return to school after MTBI/concussion.

Development of a conservative protocol to return children and youth to activity following concussive injury.

BACKGROUND: Consensus-based guidelines exist for adult athletes returning to play after concussion, but there are no protocols developed specifically for children. The goal of this knowledge translation research was to develop evidence-based materials to inform physicians about pediatric concussion. METHODS: A pediatric concussion protocol was developed based on the National Institute for Health and Care Excellence procedures. RESULTS: This return to activity protocol was developed to guide management when children/youth sustain a concussion. The protocol incorporated 3 main themes: (a) a protocol must include return to all activity, including sport and school; (b) existing consensus-based adult protocols are not appropriate for children; and (c) a more conservative protocol is needed. After pilot testing, the developed protocol is being used across Ontario. CONCLUSION: Implementation of these new pediatric recommendations is an important addition to prevention of subsequent concussions during vulnerable recovery periods, with potential to facilitate recovery by preventing prolonged symptomatology, and secondary sequelae.

Quality-of-life after brain injury in childhood: time, not severity, is the significant factor.

OBJECTIVE: Little is known about the impact of acquired brain injury (ABI) on the long-term quality-of-life (QoL) in children and youth. The objectives of this study were to illustrate the long-term QoL trajectories at 5 years post-ABI. METHODS: The QoL of children between 5-18 years (n = 94) admitted to McMaster Children's Hospital with ABI were assessed longitudinally for a minimum of 5 years post-injury using the Child Health Questionnaire. Independent t-tests were used to examine differences in QoL between the study cohort and a normative sample at different time points. Mixed-effects models were used to identify predictors for QoL. RESULTS: The QoL of children with ABI was significantly poorer (p < 0.05) than the normative data on all domains and at all-time points except at baseline. The CHQ physical summary score (PHSS) showed a significant decline immediately after injury and a significant recovery at 8 months post-injury; while the CHQ psychosocial summary score (PSSS) showed a significant immediate decline, which remained over the course of the study. Pre-morbid school record, time post-injury and mechanism of injury significantly predicted the CHQ PSSS. CONCLUSIONS: QoL is impacted by ABI regardless of severity. This impact is further affected by time post-injury.