Building I-INTERACT-North: Participatory Action Research Design of an Online Transdiagnostic Parent-Child Interaction Therapy Program to Optimize Congenital and Neurodevelopmental Risk.

To adapt an existing virtual family-based mental health intervention learning platform (I-InTERACT-North), using participatory action research design, to meet the needs of parents and children with congenital, neonatal, and neurodevelopmental conditions that impact development. A purposive sample of parent knowledge users recruited from a large pediatric hospital (n = 21) and clinician stakeholders (n = 16) participated in one interview. An iterative process was adopted to implement feedback in the adaption of the learning platform. Qualitative thematic analysis was used to examine themes across participant feedback. Initial satisfaction with the adapted website was high. Qualitative results revealed four themes: acceptability, usability, recommendations, and dissatisfaction. Addressed with iterations, technical difficulties, wanting more information on content, resources, and intended audience were areas of dissatisfaction. This study reflects the importance of participatory action research methods in informing virtual mental health interventions. Future directions to improve the learning platform are discussed.

Pandemic Perils and Promise: Implementation of a Virtual Parenting Intervention during COVID-19 among Children with Early Neurological Conditions.

OBJECTIVE: In this study, we examined feasibility, acceptability, and preliminary efficacy of a telepsychological positive parenting intervention (I-InTERACT-North, Internet-basedInteracting Together Everyday: Recovery After Childhood Traumatic Brain Injury) during the COVID-19 pandemic among Canadian families of children at-risk for neurodevelopmental challenges given congenital or neonatal conditions. I-InTERACT-North was developed to improve behavioral and emotional outcomes in children with neurological conditions by utilizing and adapting parenting strategies from several established family-focused programmes. METHODS: A pragmatic prospective pre-post single-site pilot study design was used to assess feasibility, acceptabilty, and preliminary efficacy of I-InTERACT North during the COVID-19 pandemic. RESULTS: Thirty-five families of children ages three to nine years were referred between March 2020 and January 2021. Eighteen families enrolled, and 12 (67% adherence) completed the programme. Parents reported strong therapeutic alliance and programme acceptability with barriers due to competing time demands. Therapists reported high acceptability but perceived parental burnout. Parenting confidence (d = 0.70), and child behavior (d = 1.30) improved following the intervention. CONCLUSIONS: Results demonstrate the programme's value to families during the pandemic, while underscoring unique participation barriers. Future research and clinicial implications are discussed.

[Formula: see text]Examining parent and clinician views of a hospital-based pediatric neuropsychological service: a Canadian perspective.

Understanding how pediatric neuropsychological evaluations support families and the child's medical team is an important component of ensuring evidence-based care. For the first time within a Canadian context, we investigated the impact of neuropsychological assessments on parent knowledge, advocacy, and stress and the role of socioeconomic factors in parents' perceptions of the assessment. Responses from referring clinicians were also examined. As part of a hospital quality improvement project, 91 parents of children between the ages of 3 and 17 years (M = 8y7m; SD = 4y1m) and 45 clinician consumers (clinical staff who use neuropsychological services) completed one of two online questionnaires in English: Parent Overall Assessment of Supports and Testing, or Clinician Overall Assessment of Supports and Testing. Most parents indicated the neuropsychological evaluation promoted understanding of their child's cognitive profile and improved their ability to support their child at home and at school or in the community. Families characterized as being at higher social risk indicated that the evaluation led to more changes in how they approached their child at home than families with lower social risk status. Referring clinicians indicated neuropsychological reports were effective in communicating findings to them and patients/families. The most valuable sections of the report according to referring clinicians included the diagnosis/impression and recommendations sections. Parents and referral providers reported many benefits from the neuropsychological evaluation but also identified areas for service delivery improvement. Parent perceptions varied based on family and socio environmental factors, offering important targets for future research and clinical consideration.

COVID-19 mental health impact among children with early brain injury and associated conditions.

This study describes the impact of COVID-19 among a clinical research sample of children with early brain injury and associated conditions. Between March 2020 and March 2021, 64 children and their parents participated. Children ranged in age between 3 and 14 years (M = 6 years, 3 months; SD = 2 years, 4 months) with a range of diagnoses (i.e., neonatal stroke, hypoxic ischemic encephalopathy (HIE), congenital heart disease (CHD) and preterm birth (<32 weeks)). The abbreviated CoRonavIrus Health Impact Survey (CRISIS) was completed by parents as part of their child's routine intake for neuropsychological services. Questions included COVID-19 specific ratings of child mental health impact, child, and parent stressors, with open-ended questions regarding negative and positive COVID-19 related changes. Over 40% of parents described moderate to extreme influence of COVID-19 on their child's mental health. Common child stressors reported included restrictions on leaving the home and social isolation. Among parents, the most common stress reported was caring for their child's education and daily activities. Children's mental health impact was associated with social isolation, parent mental health, COVID-19 economic concern, and number of siblings in the home. Child's age, sex, brain injury severity, or intellectual functioning were not associated with reported COVID-19 mental health impact. Some COVID-19 positives were identified, namely increased quality family time. Findings reflect the significant pandemic mental health impact among neurologically at-risk children and their families. Implications to future clinical needs and considerations for neuropsychological practice are discussed.

The association between parent stress, coping and mental health, and neurodevelopmental outcomes of infants with congenital heart disease.

Caring for the complex needs of a child with congenital heart disease (CHD) can place significant burden on the family. Parent mental health and coping have important influences on resilience and neurodevelopmental outcomes in children with CHD. Objectives: To describe the uptake of a cardiac neurodevelopmental program (CNP), examine parent mental health and coping specific to parenting a child with CHD, and explore the relationship between parent mental health and child neurodevelopmental outcomes. Method: Implementation and uptake of the CNP was examined, and forty-four parents of children with CHD completed the DASS and RSQ-CHD. Results: The CNP showed significant uptake in follow-up and interventions offered including 100% completed brain MRIs of eligible patients, 35% increase in neonatal neurology consults, and 100% of families counselled on neurodevelopmental outcomes. A significant proportion of parents endorsed moderate/severe levels of anxiety (25%), depression (20%), and CHD-specific stress. Parents predominantly engaged in secondary control engagement coping (F(2,64)=75.04, p<.001, ηp2=.70). Secondary control engagement coping was associated with lower parent total stress (r=-.48, p=.006) and anxiety (r=-.47, p=.009). Higher parent stress was associated with higher anxiety (r=.45, p=.016), depression (r=.37, p=.05), more severe types of CHD (r=.35, p=.048), older child age (t(30)= -2.33, p=.03), and lower child cognitive scores (r=-.37, p=.045). More severe types of CHD were associated with lower language scores (F(3,35)=3.50, p=.03). Conclusions: This study highlights the relationship between parent mental health and early child cognitive outcomes in CHD and helps inform models of psychological care to reduce family burden and improve child outcomes.

Intervention experiences among children with congenital and neonatal conditions impacting brain development: patterns of service utilization, barriers and future directions.

OBJECTIVE: The current study examined reported patterns of utilization and barriers to early and school-age interventions, as well as directions for future care, among families of children with congenital or neonatal conditions with known-risk for poor neurocognitive development. The impact of the child's severity of injury, condition and adaptive functioning, as well as family sociodemographic factors were considered. METHODS: The sample included 62 parents (53 mothers, 5 fathers, 4 mother-father pairs) of children diagnosed with neonatal stroke, hypoxia ischemic encephalopathy (HIE), and congenital heart disease (CHD) ranging in age between 3 to 9 years (mean age = 4.5 years, SD = 1.82). RESULTS: In this sample, approximately 80% of children were reported to have had utilized one or more therapies. The most frequent services utilized included: (a) speech and language therapy, (b) occupational therapy, and (c) physical therapy. Less than 10% of sample reported utilizing any psychological therapies. Common family barriers to all interventions included time off work, lack of childcare, and transportation. Parents of children with more severe injury or condition reported that their children were utilizing a greater number of interventions and also perceived a greater number of barriers. Over half of the parents expressed a need for more parent support groups, remote psychosocial services, and individualized psychological therapy for themselves or their family. CONCLUSIONS: Findings highlight patterns of utilization and perceived gaps in early and school-age interventions for children with congenital or neonatal conditions that impact neurodevelopment. Direction for clinical care and improved intervention opportunities are discussed.

Transdiagnostic feasibility trial of internet-based parenting intervention to reduce child behavioural difficulties associated with congenital and neonatal neurodevelopmental risk: introducing I-InTERACT-North.

OBJECTIVE: We examined feasibility and acceptability of an adapted telepsychological parent-child intervention to improve parenting skills and reduce emotional and behavioural difficulties in Canadian families of children at-risk for poor neurodevelopment given congenital or neonatal conditions. Preliminary program efficacy outcomes are also described. METHODS: Twenty-two families of children between the ages of 3-8 years with histories of neonatal stroke, hypoxic ischemic encephalopathy (HIE) and serious congenital and neonatal conditions [(congenital heart disease (CHD) or prematurity)] consented to participate in an adapted telepsychological parenting skills training program (I-InTERACT-North). The program helps parents develop positive parenting skills to improve parenting competence and child behaviour through 7 online psychoeducational modules completed independently and 7 videoconference sessions with a therapist. Videoconference sessions include live coaching to support application of skills. Feasibility (i.e., number of participants eligible, consented, refused), adherence (i.e., completion time, retention rates), acceptability (i.e., website experience questionnaire, therapist and parent semi-structured interviews), and preliminary efficacy (i.e., observational coding of parenting skill, self-reported parent competence, parent-reported child behaviour) data were collected. RESULTS: Nineteen of the 22 families (86%) enrolled completed the program in an average of 10 weeks (range: 6-17 weeks). Parents and therapists reported high overall satisfaction with the program (100%), including acceptability of both the online modules (95%) and the videoconference sessions (95%). Parenting confidence (d = 0.45), parenting skill (d = 0 .64), and child behaviour (d = 0.50) significantly improved over the course of the intervention. CONCLUSIONS: Findings provide preliminary evidence for the feasibility, acceptability, and efficacy of I-InTERACT-North for parents of children with neonatal brain injury.

The Response to Stress Questionnaire for Parents Following Neonatal Brain Injury.

OBJECTIVE: The Response to Stress Questionnaire-Brain Injury (RSQ-BI) was adapted utilizing a patient-oriented approach, exploring parental stress, coping, and associated mental health outcomes in parents of children with neonatal brain injury. The contributions of social risk, child adaptive functioning, and brain injury severity were also explored. METHODS: Using a mixed-method design, this study explored adapted stressor items on the RSQ-BI. Parents and clinicians engaged in semistructured interviews to examine key stressors specific to being a parent of a child with neonatal brain injury. The adapted RSQ-BI was piloted in a parent sample (N = 77, child mean age 1 year 7 months) with established questionnaires of social risk, child adaptive functioning, severity of the child's injury, coping style, and parent mental health. Descriptive statistics and correlations examined parent stress, coping, and their association with parent mental health. RESULTS: The final RSQ-BI questionnaire included 15 stressors. Factor analysis showed stressors loaded onto two factors related to (a) daily role stressors and (b) brain injury stressors. Using the RSQ-BI, parents reported brain injury stressors as more stressful than daily role stressors. When faced with these stressors, parents were most likely to engage in acceptance-based coping strategies and demonstrated lower symptoms of parent depression and anxiety. CONCLUSIONS: The RSQ-BI provides a valuable adaptation to understand both stressors and coping specific to being a parent of a child with neonatal brain injury. Relevant interventions that promote similar coping techniques are discussed for future care and research.