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.

'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.

Cohort Profile: Multimorbidity in Children and Youth Across the Life-course (MY LIFE) Study.

OBJECTIVE: This manuscript serves to provide an overview of the methods of the Multimorbidity in Children and Youth across the Life-course (MY LIFE) study, profile sample characteristics of the cohort, and provide baseline estimates of multimorbidity to foster collaboration with clinical and research colleagues across Canada. METHOD: MY LIFE is comprised of 263 children (2-16 years) with a physical illness recruited from McMaster Children's Hospital, their primary caregiving parent, and their closest-aged sibling. Participants are followed with data collection at recruitment, 6, 12, and 24 months which includes structured interviews, self-reported measures, and biological samples and occur in a private research office or at participants' homes. Post-COVID-19, data collection transitioned to mail and telephone surveys. RESULTS: At recruitment, children were 9.4 (4.2) years of age and 52.7% were male. The mean duration of their physical illness was 4.5 (4.1) years; 25% represent incident cases (duration <1 year). Most (69.7%) had healthy body weight and intelligence in the average range (73.5%). Overall, 38.2% of children screened positive for ≥1 mental illness according to parent report (24.8% screened positive based on child self-report). Compared to 2016 Census data, the MY LIFE cohort overrepresents families of higher socioeconomic status. CONCLUSIONS: Multimorbidity is common among children and these baseline data will serve to measure relative changes in the mental health of children with physical illness over time. MY LIFE will provide new information for understanding multimorbidity among children, though underrepresentation of lower socioeconomic families may have implications for the generalizability of findings.

OBJECTIF: Le présent manuscrit sert à présenter un aperçu des méthodes de l'étude sur la multimorbidité chez les enfants et les jeunes tout au long de la vie (MA VIE), à esquisser des caractéristiques d'échantillon de la cohorte et à fournir des estimations de base de la multimorbidité pour faciliter la collaboration avec les collègues cliniques et chercheurs du Canada. MÉTHODE: MA VIE comprend 263 enfants (de 2 à 16 ans) souffrant d'une maladie physique recrutés à l'hôpital pour enfants de McMaster, leur principal parent aidant, et leurs frères et sœurs les plus rapprochés en âge. Les participants sont suivis par une collecte de données lors du recrutement, à 6, 12, et 24 mois, ce qui comporte des entrevues structurées, des mesures auto-déclarées, et des échantillons biologiques qui sont prélevés dans un bureau privé de la recherche ou au domicile de participants. La collecte de données post-COVID-19 a effectué une transition par la poste et les sondages par téléphone. RÉSULTATS: Lors du recrutement, les enfants avaient 9,4 (4,2) ans et 52,7 % étaient de sexe masculin. La durée moyenne de leur maladie physique était de 4,5 (4,1) ans; 25 % représentaient des cas incidents (durée < 1 an). La plupart (69,7 %) avait un poids corporel sain et une intelligence dans la moyenne (73,5 %). En général, 38,2 % des enfants avaient un dépistage positif pour ≥ 1 maladie mentale selon le rapport des parents (24,8 % avaient un dépistage positif selon l'auto-déclaration des enfants). Comparativement aux données du recensement de 2016, la cohorte MA VIE surreprésente les familles de statut socio-économique plus élevé. CONCLUSIONS: La multimorbidité est commune chez les enfants et ces données de départ serviront à mesurer les changements relatifs de la santé mentale des enfants souffrant de maladie physique avec le temps. MA VIE fournira de nouvelles informations pour comprendre la multimorbidité chez les enfants, quoique la sous-représentation des familles au faible statut socio-économique puisse avoir des implications pour la généralisabilité des résultats.

COVID-19-Related Psychological and Psychosocial Distress Among Parents and Youth With Physical Illness: A Longitudinal Study.

Despite the initial thrust of research aimed at understanding the impact of the COVID-19 pandemic on youth with physical illness and their parents, knowledge gaps in the literature remain, providing the impetus for additional investigation. This study described changes in psychological distress from prior to during the COVID-19 pandemic for parents and youth with physical illness, compared parent-proxy and youth self-reported perceptions of COVID-19-related psychosocial health, and modeled factors associated with psychological and psychosocial distress. There were 147 parent-youth dyads (2-16 years) from MY LIFE-a longitudinal study of youth with physical illness. The Kessler-6 (K6) measured psychological distress for the time before the COVID-19 lockdown (December 19 to March 20) and during the pandemic (December 20 to March 21) among parents and youth. COVID-19-related psychosocial health was measured using the CRISIS. Parents and youth reported increases in K6 scores (d = 0.62 and 0.38). Parent-proxy reports on the K6 were lower vs. youth self-reports prior to and during the pandemic (d = 0.63 for both). In contrast, parents reported lower proxy CRISIS scores for worries (d = 0.38) and effects of social restrictions (d = 0.52). Pandemic parent K6 scores were associated with age, combined in-person and online schooling for youth, COVID-19-related worries, and effects of social restrictions. For youth, only COVID-19-related worries and effects of social restrictions were associated with K6 scores. Parent worries were associated with youth sex, parental stress, family functioning, online and combination learning, and social restrictions. Parental depression and worries were associated with effects of social restrictions. Youth worries were associated with online and combination learning, and social restrictions. Youth disability, online learning, and worries were associated with effects of social restrictions. Few clinical factors are associated with COVID-19-related psychological and psychosocial distress. Instead, parent/family factors and youth learning environment have prominent roles in predicting outcomes and have implications for the health, education, and social services systems.

The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review.

Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands. Search strategies were approved by a research librarian and were conducted in peer-reviewed and gray literature databases between May 2020 and February 2021. Additional resources were solicited through author networks and social media. All articles were published between December 2019 and February 2021. Article summaries were charted, and a thematic analysis was conducted with confirmation of findings with our knowledge users. Twenty-three published articles and 14 pieces of gray literature were included in the review. The majority of articles characterized and highlighted the increase in demands on caregivers of autistic children and youth during the pandemic globally. Both quantitative and qualitative studies suggest that parents have experienced an increase in stress and mental health-related symptoms during lockdown measures. Findings suggest that families are employing coping strategies, but there no evidence-based supports were identified. The review highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people, and pointed to a need for the rapid development and evaluation of flexible and timely support programs. LAY SUMMARY: Caregivers and families of autistic children and youth have faced increased demands due to pandemic-related lockdown measures. We reviewed the literature to outline sources of stress, links to their influence on caregiver mental health, and if support programs have emerged to help them. Our findings suggest a number of demands have increased caregivers' risk to mental health challenges, and their potential impact on family wellbeing. Ongoing development of evidence-based supports of all families of autistic children and youth are needed.

CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth.

INTRODUCTION: Youth with brain-based disabilities (BBDs), as well as their parents/caregivers, often feel ill-prepared for the transfer from paediatric to adult healthcare services. To address this pressing issue, we developed the MyREADY TransitionTM BBD App, a patient-facing e-health intervention. The primary aim of this randomised controlled trial (RCT) was to determine whether the App will result in greater transition readiness compared with usual care for youth with BBD. Secondary aims included exploring the contextual experiences of youth using the App, as well as the interactive processes of youth, their parents/caregivers and healthcare providers around use of the intervention. METHODS AND ANALYSIS: We aimed to randomise 264 youth with BBD between 15 and 17 years of age, to receive existing services/usual care (control group) or to receive usual care along with the App (intervention group). Our recruitment strategy includes remote and virtual options in response to the current requirements for physical distancing due to the COVID-19 pandemic. We will use an embedded experimental model design which involves embedding a qualitative study within a RCT. The Transition Readiness Assessment Questionnaire will be administered as the primary outcome measure. Analysis of covariance will be used to compare change in the two groups on the primary outcome measure; analysis will be intention-to-treat. Interviews will be conducted with subsets of youth in the intervention group, as well as parents/caregivers and healthcare providers. ETHICS AND DISSEMINATION: The study has been approved by the research ethics board of each participating site in four different regions in Canada. We will leverage our patient and family partnerships to find novel dissemination strategies. Study findings will be shared with the academic and stakeholder community, including dissemination of teaching and training tools through patient associations, and patient and family advocacy groups. TRIAL REGISTRATION NUMBER: NCT03852550.