Environment-based approaches to improve participation of young people with physical disabilities during COVID-19.

AIM: To examine the effects of the Pathways and Resources for Engagement and Participation (PREP) intervention during the COVID-19 pandemic on (1) activity performance and satisfaction, and (2) motor, cognitive, and affective body functions. METHOD: An interrupted time-series design with multiple baselines across 21 young people (13 females, eight males) aged 16 to 25 years (median = 21 years 5 months) with physical disabilities was employed. The young people engaged in an 8-week self-chosen leisure activity (e.g. football, piano, photography) at their home or community. The Canadian Occupational Performance Measure (COPM) assessed activity performance and satisfaction weekly. Mental health problems, including affective and cognitive outcomes, were assessed weekly using the Behavior Assessment System for Children, Third Edition. Motor functions (e.g. trunk control, reaching, strength) were assessed biweekly. Linear mixed-effects models were used. RESULTS: The intervention had large effects on activity performance (0.78) and satisfaction (0.88) with clinically significant change in COPM scores (2.6 [95% confidence interval {CI}: 2.0-3.2] and 3.2 points [95% CI: 2.4-3.9] respectively). Young people without mental health problems at baseline benefited more from the intervention (p = 0.028). Improvements in at least one domain of body function occurred in 10 young people especially for motor outcomes. INTERPRETATION: Results demonstrate the effectiveness of PREP during adverse times and suggest benefits going beyond participation, involving outcomes at the body-function level. WHAT THIS PAPER ADDS: Environmental-based interventions can improve participation even during adverse times such as the COVID-19 pandemic. Significant improvement with large effect sizes occurred in both activity performance and satisfaction. Intervention was effective for all; those without mental health problems benefited more. Improvements in body-function outcomes were partially observed, especially in motor-related outcomes. Body functions may improve through participation even if not targeted by the intervention.

Continuity of mental disorders in children with chronic physical illness.

Data on the chronicity of mental disorder in children with chronic physical illness (CPI) are limited. We examined the prevalence and predictors of homotypic and heterotypic continuity of mental disorder in children with CPI. A sample of 263 children aged 2-16 years with physician-diagnosed CPI were recruited from outpatient clinics (e.g., dermatology, respiratory) at a Canadian pediatric academic hospital and followed for 24 months. Parent and child-reported mental disorders (mood, anxiety, behavioral, attention-deficit hyperactivity disorder [ADHD]) were assessed using the Mini International Neuropsychiatric Interview for Children and Adolescents at baseline, 6, 12, and 24 months. Marginal regression models were computed to identify clinical, parent, and demographic factors associated with mental comorbidity over time. Mental disorder was observed in 24-27% of children with CPI based on child reports and 35-39% based on parent reports. Parent-reported models revealed significant homotypic continuity for all mental disorders (ORs = 4.2-9.5), and heterotypic continuity between mood and anxiety disorders (OR = 2.2), ADHD and behavioral disorders (OR = 5.1), and behavioral and each mental disorder (ORs = 6.7-8.4). Child-reported models revealed significant homotypic continuity for mood (OR = 8.8) and anxiety disorder (OR = 6.0), and heterotypic continuity between anxiety and mood disorders (OR = 12.4). Child disability (ORs = 1.3-1.5) and parent psychopathology (ORs = 1.2-1.8) were the most consistent predictors of both child- and parent-reported mental disorder over time. Mental comorbidity was prevalent and persistent in children with CPI with homotypic and heterotypic continuity common across informants. Child disability and parent psychopathology may be priority targets within integrated family-centered models of care to prevent mental comorbidity in children with CPI.

"Filling in the gap": A qualitative case study about identity construction of siblings of youth with a neurodisability.

INTRODUCTION: In families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims to understand the identity construction of young siblings who have a sibling with a neurodisability. METHODS: As part of a patient-oriented research program, we engaged with our Sibling Youth Advisory Council in Canada. In this qualitative case study, data from semi-structured interviews augmented by photo elicitation and graphic elicitation of relational maps were analyzed using reflexive thematic analysis. RESULTS: Nineteen sibling participants (median age = 19 years, range = 14-33 years) reflected on the uniqueness of their role during childhood. During adolescence and emerging adulthood, they became closer with their sibling with a neurodisability and increased communication with their parents about how to care for their sibling with a neurodisability. These experiences influenced how they explored and began to reconcile their sibling identity with their professional and social identities. CONCLUSION: Siblings of youth with a neurodisability discover their unique identity and require support in this developmental process. Future interventions could evaluate how supports for siblings can have an impact on the positive development of their identity.

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.

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood.

BACKGROUND: During the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision-making process of how siblings chose these roles. METHODS: In this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40 years old, had a sibling between 14 to 21 years with a childhood-onset neurodisability and spoke English. Semi-structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision-making process associated with these roles. Our team partnered with siblings with lived experience in all study phases. RESULTS: Nineteen participants (median age = 19 years, range = 14 to 33 years) from 16 unique families were interviewed. Six unique roles were described: friend, role model/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four-phase decision-making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings. CONCLUSIONS: Siblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.

Detecting Asymmetry of Upper Limb Activity with Accelerometry in Infants at Risk for Unilateral Spastic Cerebral Palsy.

AIMS: To examine whether accelerometry can quantitate asymmetry of upper limb activity in infants aged 3-12 months at risk for developing unilateral spastic cerebral palsy (USCP). METHOD: A prospective study was performed in 50 infants with unilateral perinatal brain injury at high risk of developing USCP. Triaxial accelerometers were worn on the ipsilateral and contralesional upper limb during the Hand Assessment for Infants (HAI). Infants were grouped in three age intervals (3-5 months, 5-7.5 months and 7.5 until 12 months). Each age interval group was divided in a group with and without asymmetrical hand function based on HAI cutoff values suggestive of USCP. RESULTS: In a total of 82 assessments, the asymmetry index for mean upper limb activity was higher in infants with asymmetrical hand function compared to infants with symmetrical hand function in all three age groups (ranging from 41 to 51% versus - 2-6%, p < 0.01), while the total activity of both upper limbs did not differ. CONCLUSIONS: Upper limb accelerometry can identify asymmetrical hand function in the upper limbs in infants with unilateral perinatal brain injury from 3 months onwards and is complementary to the Hand Assessment for Infants.

Accelerometer-measured physical activity, sedentary behavior, and sleep in children with cerebral palsy and their adherence to the 24-hour activity guidelines.

AIM: To measure and describe the 24-hour activities (i.e. physical activity, sedentary behavior, and sleep) and to examine adherence to the 24-hour activity guidelines among children with cerebral palsy (CP) using actigraphy. METHOD: Children's 24-hour activities were recorded over 7 days using hip- and wrist-worn ActiGraph wGT3X-BT accelerometers. RESULTS: In total, 362 days and 340 nights from 54 children with CP (Gross Motor Function Classification System [GMFCS] levels I-III; 44% females; median age [range] 6 years 6 months [3-12 years]) were included. Mean (SD) daily wear time was 746.2 (48.9) minutes, of which children spent on average 33.8% in light physical activity (251.6 [58.7] minutes per day), 5.2% in moderate-to-vigorous physical activity (38.5 [20.1] minutes per day), and the remaining 61.1% being sedentary (456.1 [80.4] minutes per day). Physical activity decreased while sedentary behavior increased with increasing GMFCS level. In total, 13% of all children met the physical activity recommendations, and 35% met the age-appropriate sleep duration recommendation. The proportion of children meeting the combined 24-hour guidelines for physical activity and sleep was low (5.9%), especially in those classified in GMFCS level III (0%). INTERPRETATION: The observed low 24-hour guideline adherence rates emphasize the importance of considering the entire continuum of movement behaviors in the care of children with CP, in efforts to promote healthy lifestyle behaviors and prevent negative health outcomes.

Self-reported quantity and quality of sleep in children and adolescents with a chronic condition compared to healthy controls.

To assess self-reported quantity and quality of sleep in Dutch children with a chronic condition compared to healthy controls and to the recommended hours of sleep for youth. Sleep quantity and quality were analyzed in children with a chronic condition (cystic fibrosis, chronic kidney disease, congenital heart disease, (auto-)immune disease, and medically unexplained symptoms (MUS); n = 291; 15 ± 3.1 years, 63% female. A subset of 171 children with a chronic condition were matched to healthy controls using Propensity Score matching, based on age and sex, ratio 1:4. Self-reported sleep quantity and quality were assessed with established questionnaires. Children with MUS were analyzed separately to distinguish between chronic conditions with and without an identified pathophysiological cause. Generally, children with a chronic condition met the recommended amount of sleep, however 22% reported poor sleep quality. No significant differences in sleep quantity and quality were found between the diagnosis groups. Children with a chronic condition and with MUS slept significantly more than healthy controls at ages 13, 15, and 16. Both at primary and secondary school, poor sleep quality was least frequent reported in children with a chronic condition and most often reported in children with MUS.  Conclusion: Overall, children with chronic conditions, including MUS, met the recommended hours of sleep for youth, and slept more than healthy controls. However, it is important to obtain a better understanding of why a substantial subset of children with chronic conditions, mostly children with MUS, still perceived their sleep quality as poor. What is Known: • According to the Consensus statement of the American Academy of Sleep medicine, typically developing children (6 to 12 years) should sleep 9 to 12 h per night, and adolescents (13 to 18 years) should sleep 8 to 10 h per night. • Literature on the optimal quantity and quality of sleep in children with a chronic condition is very limited. What is New: Our findings are important and provide novel insights: • In general, children with a chronic condition sleep according to the recommended hours of sleep. • A substantial subset of children with chronic conditions, perceived their sleep quality as poor. Although this was reported mostly by children with medically unexplained symptoms (MUS), the found poor sleep quality was independent of specific diagnosis.

A systematic scoping review on contextual factors associated with communicative participation among children with developmental language disorder.

BACKGROUND: Variations in communicative participation of children with developmental language disorder (DLD) cannot be wholly explained by their language difficulties alone and may be influenced by contextual factors. Contextual factors may support or hinder communicative participation in children, which makes their identification clinically relevant. AIMS: To investigate which contextual (environmental and personal) factors in early childhood are protective, risk or neutral factors for communicative participation among school-aged children with DLD, and to identify possible gaps in knowledge about this subject. METHODS & PROCEDURES: A scoping review was conducted based on a systematic search of studies published from January 2007 to March 2022 in Pubmed, Embase (without MEDLINE), CINAHL and PsycINFO. In total, 8802 studies were reviewed using predefined eligibility criteria, of which 32 studies were included for data extraction and critically appraised using the Critical Appraisal Skills Programme (2021) tools. MAIN CONTRIBUTION: The methodological quality of included studies was adequate to strong. Personal protective factors identified are being a preschool girl, reaching school age and being prosocial, while personal risk factors are becoming a teenager or adolescent, having low socio-cognitive skills and experiencing comorbid mobility impairment or behavioural problems. Gender after the preschool years and non-verbal abilities were not found to be of influence, and the role of socio-emotional skills is inconclusive. Receiving therapy is an environmental protective factor, while the association between socio-economical family characteristics with communicative participation is inconclusive. CONCLUSIONS & IMPLICATIONS: Limited research has been conducted on which risk and protective factors present in early childhood are associated with later communicative participation of children with DLD. The influence of co-occurring health conditions, social background variables, individual psychological assets, interpersonal relationships and attitudes of other people represent knowledge gaps. In addition, knowledge about the comparative effectiveness of different types of interventions and service delivery models, and the impact of administrative control, organizational mechanisms and standards established by governments on children's communicative participation is lacking. More longitudinal research is needed focusing on the identification of relevant personal and environmental factors and the interactions between them in relation to communicative participation outcomes. WHAT THIS PAPER ADDS: What is already known on this subject Children with DLD experience varying degrees of communicative participation restrictions. Insight into contextual factors that influence communicative participation can help to identify children at risk and inform family and child-centred therapy. Systematic research on contextual factors that facilitate or hinder communicative participation in children with DLD is currently lacking. What this paper adds to existing knowledge Knowledge of protective factors can guide the development of interventions for children and young people with DLD that boost resilience and facilitate communicative participation, while insight into the risk factors can help professionals identify the most vulnerable children and develop interventions that can lift or neutralize barriers present in the life of these children. Specific groups potentially at risk are young boys, children with co-morbid mobility impairment, children with conduct problems, and children reaching adolescence. In contrast, potentially protective factors are reaching school age and being prosocial. In addition, the development of socio-cognitive skills may be beneficial for the communicative participation of children with DLD. What are the potential or actual clinical implications of this work? To support communicative participation, it is important that professionals who work with children with DLD understand which groups are at risk for communicative participation restrictions, and which factors can foster resilience. In the absence of evidence-based instruments for the systematic assessment of personal and environmental factors, consulting parents and children on the contextual factors that they perceive as important remains critical.

Population-Based Teacher-Rated Assessment of Anxiety Among Canadian Kindergarten Children.

Despite anxiety being a prevalent mental health problem in children, little data exist on the pervasiveness and levels of anxiety symptoms in kindergarteners. Data from the Early Development Instrument, a teacher-completed, population-level measure of child development, were collected across Canada from 2004 to 2015. The final analytic sample consisted of 974,319 children of whom 2.6% were classified as "highly anxious". Compared to children who exhibited "few to none" anxious behaviors, highly anxious children were more likely to be male, have English/French as a second language, and have a special needs designation. Furthermore, compared with their less anxious peers, highly anxious children had between 3.5 and 6.1 higher odds of scoring below the 10th percentile cut-off in physical, social, language/cognitive and communication domains. Our findings suggest that anxious behaviors are related to children's overall health and illustrate the consistency and extensiveness of anxiety at a very young age among Canadian children.

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.

Physical rehabilitation interventions in children with acquired brain injury: a scoping review.

AIM: To synthesize the evidence about the characteristics (frequency, intensity, time, type) and effects of physical rehabilitation interventions on functional recovery and performance in daily functioning in children and young people with acquired brain injury (ABI), including traumatic brain injuries (TBI) and non-TBI, during the subacute rehabilitation phase. METHOD: Using scoping review methodology, a systematic literature search was performed using four databases. Articles were screened by title and abstract and data from eligible studies were extracted for synthesis. RESULTS: Nine of 3009 studies were included. The results demonstrated a variety of intervention characteristics: frequency varied between 1 and 7 days per week; time of intervention varied between 25 minutes and 6 hours a day; intervention types were specified in seven studies; and none of the included studies reported details of intensity of intervention. All studies reported positive results on the International Classification of Functioning, Disability and Health: Children and Youth (ICF-CY) levels of body function and activities after the intervention period, with study designs of included studies being cohort studies without concurrent controls (n=7) or case reports (n=2). INTERPRETATION: Inconsistency in results hampers generalizability to guide clinical practice. Physical interventions during subacute rehabilitation have potential to improve functional recovery with intervention characteristics as an important factor influencing its effectiveness. Future well-designed studies are indicated to gain knowledge and optimize rehabilitation practice in paediatric ABI and high-quality research including outcomes across all ICF-CY domains is needed.

A core outcome set for multimorbidity risk in individuals with cerebral palsy.

AIM: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels. METHOD: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min-max: 14-68y, 52.2% male) at four centres. Prevalence of multimorbidity risk and associations with GMFCS levels are described. RESULTS: Most participants rated physical behaviour, nutrition, sleep, and endurance as very important. Body composition, blood pressure, nutrition, and sleep were highly feasible since data were collected in 88% or more participants who consented to having the assessments. Physical behaviour, cardiorespiratory endurance, and blood draws were collected in less than 60% of participants. Total time sedentary (ρ=0.53, p<0.01) and endurance (ρ=-0.46, p<0.01) were significantly associated with GMFCS level. INTERPRETATION: The COS identified that most participants had poor sleep quality and endurance, did not have healthy diets, and showed increased sedentary behaviour. Individuals with CP valued these outcomes as most important, suggesting a need to assess these modifiable behaviours in this population. Objective measures of physical behaviour and cardiorespiratory endurance in the COS required additional personnel, time, and participant burden. We recommend that healthcare providers should perform a simpler first screen using questionnaire-based assessments and then focus the use of the remainder of the COS if required for the patient.

UM DESFECHO CENTRAL DEFINIDO PARA RISCO DE MULTIMORBIDADE EM INDIVÍDUOS COM PARALISIA CEREBRAL: OBJETIVO: (1) Investigar a importância dos instrumentos de medição de desfechos (IMD) dentro de um conjunto de desfechos principais (CDS) para risco de multimorbidade (pelo menos duas condições crônicas de saúde) em indivíduos com paralisia cerebral (PC); (2) Investigar a viabilidade de IMD dentro do CDS em cenários internacionais de pesquisa clínica em adolescentes e adultos com PC; e (3) Descrever as associações entre os dados do CDS e os níveis do Sistema de Classificação da Função Motora Grossa (GMFCS). MÉTODO: Oitenta e três indivíduos com PC completaram uma pesquisa sobre desfechos em saúde: comportamento físico, nutrição, sono, resistência, composição corporal, pressão arterial, lipídios no sangue e glicose. Um estudo transversal avaliou a viabilidade do COS em 67 adolescentes e adultos com PC (idade média de 30 anos, desvio padrão de 15 anos e 1 mês, min-max: 14-68 anos, 52,2% do sexo masculino) em quatro centros. São descritas a prevalência do risco de multimorbidade e as associações com os níveis de GMFCS. RESULTADOS: A maioria dos participantes classificou o comportamento físico, nutrição, sono e resistência como muito importantes. Composição corporal, pressão arterial, nutrição e sono foram altamente viáveis, uma vez que os dados foram coletados em 88% ou mais dos participantes que consentiram em realizar as avaliações. Comportamento físico, resistência cardiorrespiratória e coleta de sangue foram coletados em menos de 60% dos participantes. O tempo total de sedentarismo (ρ = 0,53, p < 0,01) e resistência (ρ = −0,46, p < 0,01) foram significativamente associados ao nível de GMFCS. INTERPRETAÇÃO: O CDS identificou que a maioria dos participantes tinha má qualidade e resistência do sono, não tinha dietas saudáveis e apresentava um comportamento sedentário aumentado. Indivíduos com PC valorizaram esses desfechos como mais importantes, sugerindo a necessidade de avaliar esses comportamentos modificáveis nessa população. Medidas objetivas de comportamento físico e resistência cardiorrespiratória no CDS exigiram pessoal adicional, tempo e sobrecarga do participante. Recomendamos que os profissionais de saúde realizem uma primeira triagem mais simples usando avaliações baseadas em questionários e, em seguida, concentrem o uso do restante do CDS, se necessário para o paciente.

Prevalence and Correlates of Physical-mental Multimorbidity in Outpatient Children From a Pediatric Hospital in Canada.

OBJECTIVE: The aim of this study was to estimate the six-month prevalence of mental illness in children with chronic physical illness (multimorbidity), examine agreement between parent and child reports of multimorbidity, and identify factors associated with child multimorbidity. METHOD: The sample included 263 children aged 2-16 years with a physician-diagnosed chronic physical illness recruited from the outpatient clinics at a pediatric hospital. Children were categorized by physical illness according to the International Statistical Classification of Diseases and Related Health Problems (ICD)-10. Parent and child-reported six-month mental illness was based on the Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID). RESULTS: Overall, 101 (38%) of children had a parent-reported mental illness; 29 (25%) children self-reported mental illness. There were no differences in prevalence across ICD-10 classifications. Parent-child agreement on the MINI-KID was low (κ = 0.18), ranging from κ = 0.24 for specific phobia to κ = 0.03 for attention-deficit hyperactivity. From logistic regression modeling (odds ratio [OR] and 95% confidence interval), factors associated with multimorbidity were: child age (OR = 1.16 [1.04, 1.31]), male (OR = 3.76 [1.54, 9.22]), ≥$90,000 household income (OR = 2.57 [1.08, 6.22]), parental symptoms of depression (OR = 1.09 [1.03, 1.14]), and child disability (OR = 1.21 [1.13, 1.30]). Similar results were obtained when modeling number of mental illnesses. CONCLUSIONS: Findings suggest that six-month multimorbidity is common and similar across different physical illnesses. Level of disability is a robust, potentially modifiable correlate of multimorbidity that can be assessed routinely by health professionals in the pediatric setting to initiate early mental health intervention to reduce the incidence of multimorbidity in children.

Exploring 10 years of dissemination of the F-words for Child Development: A multifaceted case study.

BACKGROUND: There is growing interest in exploring how to move research findings into practice. Since 2014, a team of families and researchers has been working to promote and study the dissemination of the "F-words for Child Development" (Function, Family, Fitness, Fun, Friends, and Future). This case study describes our dissemination strategies and uses the Diffusion of Innovation theory to understand the factors contributing to the uptake of the F-words-a function-promoting, strengths-based, and family-centred innovation in child health and development. METHODS: Between November 2011 and November 2021, we collected data from multiple sources: our dissemination strategies, including affiliated documents/artefacts (e.g., videos and presentations) and evaluation data (e.g., surveys and Google/video analytics). We used a two-step analysis: (1) a chronological time series to describe the processes involved along with indicators of dissemination over time (e.g., increase knowledge and awareness); and (2) Diffusion of Innovation theory to explore the factors that contributed to the uptake of the F-words. RESULTS: Multifaceted dissemination strategies were essential to raise awareness and increase families' and service providers' knowledge of the F-words. These included three primary strategies: (i) development and distribution of educational materials; (ii) presentations at educational meetings; and (iii) educational outreach visits. Additional strategies, such as the use of mass media, collaboration with early adopters/champions, and the involvement of family members further supported dissemination efforts. Diffusion of Innovation factors (innovation characteristics, time, social systems, and communication channels) all contributed to the uptake of this innovation. CONCLUSIONS: Purposeful planned dissemination practice, to increase knowledge and awareness of an innovation, is an important step in the knowledge translation process. Over a period of 10 years, through the use of multiple dissemination strategies conducted in partnership with families and service providers, the F-words have spread globally. Diffusion of Innovation theory has served to help understand how and why the F-words are being shared and adopted around the world.

Programmes to support paediatric to adult healthcare transitions for youth with complex care needs and their families: A scoping review.

BACKGROUND: An increasing number of children have complex care needs (CCN) that impact their health and cause limitations in their lives. More of these youth are transitioning from paediatric to adult healthcare due to complex conditions being increasingly associated with survival into adulthood. Typically, the transition process is plagued by barriers, which can lead to adverse health consequences. There is an increased need for transitional care interventions when moving from paediatric to adult healthcare. To date, literature associated with this process for youth with CCN and their families has not been systematically examined. OBJECTIVES: The objective of this scoping review is to map the range of programmes in the literature that support youth with CCN and their families as they transition from paediatric to adult healthcare. METHODS: The review was conducted in accordance with the Joanna Briggs Institute's methodology for scoping reviews. A search, last run in April 2021, located published articles in PubMed, CINAHL, ERIC, PsycINFO and Social Work Abstracts databases. RESULTS: The search yielded 1523 citations, of which 47 articles met the eligibility criteria. A summary of the article characteristics, programme characteristics and programme barriers and enablers is provided. Overall, articles reported on a variety of programmes that focused on supporting youth with various conditions, beginning in the early or late teenage years. Financial support and lack of training for care providers were the most common transition program barriers, whereas a dedicated transition coordinator, collaborative care, transition tools and interpersonal support were the most common enablers. The most common patient-level outcome reported was satisfaction. DISCUSSION: This review consolidates available information about interventions designed to support youth with CCN transitioning from paediatric to adult healthcare. The results will help to inform further research, as well as transition policy and practice advancement.

'This battle, between your gut feeling and your mind. Try to find the right balance': Parental experiences of children with spinal muscular atrophy during COVID-19 pandemic.

AIMS: Parents of children with spinal muscular atrophy (SMA) often struggle with the all-consuming nature of the demands of caring for a child with substantial physical needs. Our aim was to explore experiences, challenges and needs of parents of a child with SMA in a COVID-19 pandemic situation. METHOD: Nineteen parents of 21 children (15 months to 13 years of age) with SMA types 1-3 participated in semi-structured interviews in June to July 2020. The interviews were analysed using inductive thematic analysis. RESULTS: Parents mentioned the protection of the health and well-being of the child as the central perspective and driving force during the COVID-19 pandemic. Three subthemes were identified: (1) responsibility, (2) balancing vulnerability and resilience and (3) (in)security. Some parents focused on the positive aspects during the lockdown, such as continuation of nusinersen treatment and family life. Some parents described helpful and positive cognitions to cope with the situation. In general, parents described a need for information with regard to COVID-19 and their child with SMA and a need for discussing their dilemmas and insecurities with a healthcare professional. INTERPRETATION: Parents put the health and well-being of their children first during the pandemic. From this study, we learned that parents of children with SMA need information and value direct contact with a healthcare professional to share their dilemmas and insecurities. The dialogue can help to empower parents in the conflicts and decisions they have to make during a pandemic.

A call for action: Recommendations to improve transition to adult care for youth with complex health care needs.

Youth with complex health care needs, defined as those requiring specialized health care and services for physical, developmental, and/or mental health conditions, are often cared for by paediatricians and paediatric specialists. In Canada, the age at which provincial/territorial funders mandate the transfer of paediatric care to adult services varies, ranging between 16 and 19 years. The current configuration of distinct paediatric and adult care service boundaries is fragmentary, raising barriers to continuity of care during an already vulnerable developmental period. For youth, the lack of care integration across sectors can negatively impact health engagement and jeopardize health outcomes into adulthood. To address these barriers and improve transition outcomes, paediatric and adult care providers, as well as family physicians and other community partners, must collaborate in meaningful ways to develop system-based strategies that streamline and safeguard care for youth transitioning to adult services across tertiary, community, and primary care settings. Flexible age cut-offs for transfer to adult care are recommended, along with considering each youth's developmental stage and capacity as well as patient and family needs and circumstances. Specialized training and education in transitional care issues are needed to build capacity and ensure that health care providers across diverse disciplines and settings are better equipped to accept and care for young people with complex health care needs.

Appel à l'action : des recommandations pour améliorer la transition des jeunes ayant des besoins de santé complexes vers les soins aux adultes.

Les jeunes qui ont des besoins de santé complexes, définis comme ceux qui nécessitent des soins et services spécialisés en raison d'affections physiques, développementales ou mentales, sont souvent traités par des pédiatres et autres spécialistes en pédiatrie. Au Canada, l'âge auquel les bailleurs de fonds provinciaux et territoriaux exigent le transfert des soins pédiatriques aux soins pour adultes varie entre 16 et 19 ans. La délimitation actuelle entre les services de santé pédiatriques et aux adultes est fragmentaire, ce qui entrave la continuité des soins pendant une période déjà vulnérable du développement. Le peu d'intégration des soins entre les domaines peut nuire à l'engagement des jeunes en matière de santé et compromettre leur santé à l'âge adulte. Pour renverser ces obstacles et améliorer les résultats de la transition, les dispensateurs de soins pédiatriques et de soins aux adultes, de même que les médecins de famille et d'autres partenaires communautaires, doivent collaborer de manière satisfaisante à l'élaboration de stratégies systémiques qui rationalisent et préservent les soins aux jeunes en transition vers des soins aux adultes en milieu tertiaire, communautaire et primaire. Il est recommandé de privilégier des limites d'âge flexibles pour effectuer cette transition vers les soins aux adultes et de tenir compte de la phase de développement et de l'aptitude de chaque jeune, ainsi que des besoins et de la situation de chaque patient et de chaque famille. Une formation et un enseignement spécialisés sur les enjeux liés aux soins de transition s'imposent pour renforcer les capacités et s'assurer que les professionnels de la santé des diverses disciplines et des divers milieux soient mieux outillés pour accepter et traiter les jeunes qui ont des besoins de santé complexes.

24-hour activity for children with cerebral palsy: a clinical practice guide.

The association between physical activity and health has been clearly established, and the promotion of physical activity should be viewed as a cost-effective approach that is universally prescribed as a first-line treatment for nearly every chronic disease. Health care providers involved in the care for individuals with cerebral palsy (CP) are encouraged to take an active role in promoting their health and well-being. Balancing activity behaviours across the whole day, with improved physical activity, reduced sedentary time, and healthy sleep behaviours, can set up infants, preschool-, and school-aged children with CP for a healthy trajectory across their lifetime. However, most clinicians do not apply a systematic surveillance, assessment, and management approach to detect problems with physical activity or sleep in children with CP. Consequently, many children with CP miss out on an important first line of treatment. This article presents an evidence-informed clinical practice guide with practical pointers to help practitioners in detecting 24-hour activity problems as a critical step towards adoption of healthy lifestyle behaviours for children with CP that provide long-term health benefits.

La asociación entre la actividad física y la salud se ha establecido claramente, y la promoción de la actividad física debe verse como un enfoque rentable que se prescribe universalmente como tratamiento de primera línea para casi todas las enfermedades crónicas. Se alienta a los proveedores de atención médica involucrados en la atención de personas con parálisis cerebral (PC) a que tomen un papel activo en la promoción de su salud y bienestar. Equilibrar las conductas de actividad durante todo el día, con una mejor actividad física, una reducción del tiempo sedentario y conductas de sueño saludables, puede preparar a los bebés, niños en edad preescolar y escolar con PC para una trayectoria saludable a lo largo de su vida. Sin embargo, la mayoría de los médicos no aplican un enfoque sistemático de vigilancia, evaluación y manejo para detectar problemas con la actividad física o el sueño en niños con PC. En consecuencia, muchos niños con PC pierden una importante primera línea de tratamiento. Este artículo presenta una guía de práctica clínica basada en evidencia con consejos prácticos para ayudar a los profesionales a detectar problemas de actividad durante las 24 horas como un paso crítico hacia la adopción de comportamientos de estilo de vida saludables para niños con PC que brindan beneficios para la salud a largo plazo.

A associação entre atividade física e saúde tem sido claramente estabelecida,e a promoção de atividade física deve ser vista como abordagem custo-efetiva que é universalmente prescrita como tratamento de primeira linha para toda doença crônica. Profissionais da saúde envolvidos no cuidado para indivíduos com paralisia cerebral (PC) são encorajados a assumir um papel ativo na promoção da sua saúde e bem estar. Balancear comportamentos ativos ao longo de todo o dia, com melhora da atividade física, redução do tempo sedentário, e hábitos de sono saudáveis, pode preparar lactentes, pré-escolares e escolares com PC para uma trajetória saudável ao longo de sua vida. No entanto, a maior parte dos clínicos não aplica uma vigilância, avaliação e manejo sistemáticos para detectar problemas de atividade física ou sono em crianças com PC. Consequentemente, muitas crianças com PC deixam de receber uma importante primeira linha de tratamento. Este artigo apresenta um guia para prática clínica informado por evidências com pontos práticos para ajudar profissionais a detectar problemas de atividade física ao longo de 24 horas como um passo crítico em direção à adoção de comportamentos ativos de estilo de vida para crianças com PC que oferecem benefícios de longo prazo para a saúde.