Encouraging diversity in family engagement in research: Reflections on the development of knowledge translation tools.

BACKGROUND: Family engagement in research is crucial to generating relevant, impactful, and meaningful priorities and outcomes. Although there has been increased awareness and value for patient-oriented research, most patient partners in North America are from Western, educated, industrialized, rich and democratic societies. Encouraging underserviced and marginalized populations to join the partnerships is important. This project demonstrates the development of two knowledge translation tools created to encourage diversity in patient-family and researcher partnerships. CASE STUDY: Our diverse cross-Canadian team embodies the family-researcher partnership as it consists of two research personnel from non-Western origins with immigrant experiences, a parent with lived experience, and a project director. All group members have experience in the field of mental health and neurodevelopmental conditions. Four infographics were created: 3 patient-oriented ones (in English, Chinese, and Farsi) and 1 researcher-targeted one. Content for the infographics were generated to address common barriers to patient engagement identified from literature reviews, as well as key concepts discussed during the McMaster University Continuing Education Family Engagement in Research Certificate Course sponsored by CanChild & Kids Brain Health Network. Peer consultations helped to improve the infographics to be more culturally sensitive and appealing. The patient-oriented infographic presents concise bullet points about 5 main topics: (1) what is research, (2) reasons to join, (3) your role, (4) talking to researchers, and (5) how to join. The researcher-targeted infographic presents concise bullet points about 4 topics: 1) why team up with diverse patient partners, (2) ways to partner, (3) how to connect, and (4) talking to diverse partners. CONCLUSION: Infographics were co-designed to encourage diversity in family engagement in research. Lessons learned throughout the project include barriers encountered (e.g., team collaboration considerations, design limitations) and strategies that facilitated the project (e.g., online collaboration platforms). Future directions include translations into other languages, increased dissemination across agencies, and evaluating the effectiveness of the infographic tools.

Family partnership in research is important because it keeps the results relevant and useful to families. Yet, most families who partner with researchers are from rich, Western societies. This means that research does not often include a variety of people and points of view. So, it is important to build research partnerships with diverse people. For our project, we created two information posters. The posters promote diversity in partnerships between researchers, patients, and families. Our own cross-Canada research team is an example of the family-researcher partnership. We share how we created content and translated it into Chinese and Farsi. We also share what we learned during the project, what we found difficult, and what was helpful. Next, we plan to translate the posters into other languages and share them with more people. We will also test the benefit of these posters.

Virtual Delivery of Parent Coaching Interventions in Early Childhood Mental Health: A Scoping Review.

Parent-coaching interventions positively impact child development. Virtual delivery of such interventions is supported by literature reviews and a practice guideline, however, none of these focused on children under age six. A scoping review of virtually-delivered parent-coaching interventions for disruptive behaviour, anxiety, and parent-child relationship concerns in children under age six was conducted between Dec. 15, 2020 and April 22, 2021. Iterative searches of the databases PubMed, CINAHL, and PsycINFO were complemented by reference list searches and clinician expert review (N = 1146). After relevance screening and duplicate removal, collaboratively-developed inclusion criteria were applied to records, followed by data extraction from eligible articles (n = 30). Most literature documented behavioural-based interventions targeting disruptive behaviour which were delivered individually, by therapists, to White, non-Hispanic parents. Evidence supports feasibility and efficacy of virtually-delivered parent-coaching interventions to improve child disruptive behaviour (strong), anxiety (moderate), and parent-child relationship (weak). There is a significant gap in the literature regarding the virtual delivery of attachment-based parent-coaching interventions. In sum, virtual parent coaching can be an efficacious approach for children under age six, particularly for behavioural challenges.

Feasibility and Efficacy of the Alert Program® for Children with Attention-Deficit/Hyperactivity Disorder.

This study explored the feasibility and initial efficacy of a sensorimotor intervention to improve symptoms of attention-deficit/hyperactivity disorder (ADHD). Twenty-seven children (ages 8-12 years) with ADHD and their parents participated in an 8-week group intervention based on The Alert Program® for Self-Regulation (AP). Families were taught to recognize child arousal states and to use sensorimotor strategies to manage levels of alertness. Parent and teacher reports of child attention symptoms were collected at baseline, before and after intervention. Objective ratings of child problem behaviours and use of sensorimotor strategies during computerized tasks of visual and auditory attention were also coded before and after intervention. Parents and children endorsed high acceptability and satisfaction for the AP treatment. Parental ratings indicated increased knowledge and use of sensorimotor strategies, and decreased child ADHD symptoms at home from pre-AP to post-AP. However, no significant changes in child outcomes were reported by teachers. Unexpectedly, observed child problem behaviours during the visual attention task increased from pre-AP to post-AP. The AP was received positively by parents and children with improvements in regulation strategies and child attention at home, but more work needs to be done to generalize the effects to school and other peer settings.

Mindfulness-Enhanced Behavioral Parent Training for Clinic-Referred Families of Children With ADHD: A Randomized Controlled Trial.

Objective: This study evaluated the efficacy of a mindfulness-enhanced behavioral parent training (BPT) group program compared to standard BPT in families of children with ADHD. Method: Parents (N = 63) of children (aged 6-11) diagnosed with ADHD were randomly assigned to either mindful or standard BPT, and participated in 12 weekly 2-hr group sessions. Parents completed a series of questionnaires assessing mindful parenting, parenting stress, harsh discipline practices, behavioral dysregulation, and child ADHD symptoms, before and after completing the group intervention. Results: Parents in the mindful group had decreased harsh discipline practices and improved self-regulation compared to parents in the standard group. Both groups improved in parenting sense of competence and child ADHD symptoms. No significant group differences were found in mindful parenting or parenting stress. Conclusion: There are some important parental benefits to enhancing BPT with mindfulness.

Predicting Use of Medications for Children with ADHD: The Contribution of Parent Social Cognitions.

OBJECTIVE: To explore how well parental social cognitions, guided by the Theory of Reasoned Action (TRA), contribute to the uptake and continuation of stimulant medication for children with ADHD. No previous study has explored this model in predicting medication use in a clinical sample. METHOD: Sixty-nine parents of children aged 6-13 years presenting to a tertiary ADHD clinic completed questionnaires, and a clinician documented their medication usage. RESULTS: When controlling for medication status at baseline, both of the components of the TRA (i.e., attitudes and norms) predicted medication status following initial visit. Logistic regressions indicated that parents were more likely to enroll in or continue stimulant medication if they had lower stigma related to ADHD, a higher opinion of ADHD medications, and a greater knowledge of ADHD; this model classified 72.5% of the patients who started or continued stimulant medications. CONCLUSIONS: Findings suggest that the parents' knowledge about ADHD, opinion about treatment, and ADHD-related stigma are key factors to target in order to increase the uptake and continued use of evidence-based pharmacological interventions for children with ADHD.

OBJECTIF: Explorer à quel point les cognitions sociales parentales, guidées par la théorie de l'action raisonnée (TAR), contribuent à l'utilisation et à la continuation de médicaments stimulants pour les enfants souffrant du TDAH. Aucune étude précédente n'a exploré ce modèle pour prédire l'utilisation de médicaments dans un échantillon clinique. MÉTHODE: Soixante-neuf parents d'enfants de 6 à 13 ans qui se sont présentés à une clinique tertiaire du TDAH ont rempli des questionnaires, et un clinicien a documenté leur utilisation de médicaments. RÉSULTATS: Après contrôle de l'état des médicaments au départ, les deux composantes de la TAR (c.-à-d., les attitudes et les normes) prédisaient l'état des médicaments par suite de la première visite. Les régressions logistiques indiquaient que les parents étaient plus susceptibles de commencer ou de continuer les médicaments stimulants s'ils avaient moins de stigmates liés au TDAH, une meilleure opinion des médicaments du TDAH, et une meilleure connaissance du TDAH; ce modèle a classifié 72,5 % des patients qui ont commencé ou continué les médicaments stimulants. CONCLUSIONS: Les résultats suggèrent que les connaissances des parents au sujet du TDAH, leur opinion sur le traitement et les stigmates liés au TDAH sont des facteurs clés à cibler afin d'accroître l'utilisation nouvelle et continue des interventions pharmacologiques fondées sur des données probantes pour les enfants souffrant du TDAH.

Mixed methods study exploring parent engagement in child health research in British Columbia.

OBJECTIVES: The objective of this study was to explore parent perspectives of and interest in an interactive knowledge translation platform called Child-Sized KT that proposes to catalyse the collaboration of patients, families, practitioners and researchers in patient-oriented research at British Columbia Children's Hospital (BCCH). METHODS: An explanatory sequential mixed methods design was used over 1 year. Over 500 parents across BC completed an online survey, including a subsample of 102 parents who had accessed care at BCCH within the past 2 years. The survey explored parent perspectives about the value of their engagement at all stages of the research process and their interest in and concerns with using an online platform. Following the online survey, two focus groups were held with parents in the Vancouver area to explore themes emerging from the survey. RESULTS: Parents expressed keen interest in engaging in research at BCCH. Parents perceived benefit from their input at all stages of the research process; however, they were most interested in helping to identify the problem, develop the research question and share the results. Although parents preferred online participation, they had concerns about protecting the privacy of their child's information. CONCLUSIONS: Parents see value in their involvement in all stages of child health research at BCCH. Their input suggests that Child-Sized KT, a hypothetical online platform, would facilitate meaningful stakeholder engagement in child health research, but should offer a customised experience and ensure the highest standard of data privacy and protection.

A case-control study of sleep disturbances in pediatric obsessive-compulsive disorder.

BACKGROUND: Sleep disturbances, including delayed sleep phase disorder (DSPD) and disorders of sleep initiation and maintenance (DIMS), have repeatedly been identified in adult obsessive-compulsive disorder (OCD). These disturbances have not been well-characterized objectively in pediatric OCD. METHODS: Thirty OCD-affected youth (8-18 yrs, 40% male) and 30 age and gender-matched healthy controls (HCs) completed the Sleep Disturbances Scale for Children (SDSC), and one week of continuous actigraphy with concurrent sleep diary documentation. A subsample completed the Children's Sleep Hygiene Scale (CSHS) and Sleep Attitudes and Beliefs Scale (SABS). RESULTS: Seventy-two percent of OCD participants reported sleep disturbances versus 15% of HC participants (p < 0.001). Convergent actigraphy results suggested DIMS but not DSPD were common. DISCUSSION: The parents of OCD-affected children seem to be successfully controlling bedtimes, preventing circadian rhythm system disruptions. OCD status does adversely impact, however, the perisleep arousal system. These results have important clinical implications, suggesting sleep problems may be best managed through direct treatment of OCD symptoms. It is recommended that all pediatric OCD patients be screened for sleep disturbances to inform treatment plan development.

Visual Schedule System in Dental Care for Patients with Autism: A Pilot Study.

OBJECTIVES: A pilot study to test whether a visual schedule system using picture communication symbols can help children with autism have successful routine dental cleaning visits. STUDY DESIGN: 14 boys with autism between three- to eight-years-old presented to the dental clinic for four weekly consecutive dental appointments. Patients were randomly assigned to either the control group who received the tell-show-do method (i.e., standard of care), or the test group who received the tell-show-do method plus the visual schedule system. RESULTS: Patients in the test group completed an average of 1.38 more steps, at 35.52 seconds per step faster, and with 18.7% lower levels of behavioral distress than those in the control group. CONCLUSION: The use of a visual schedule system, along with repeated weekly visits, showed some promise in helping children with autism successfully complete more steps, progress at a quicker rate, and exhibit lower levels of behavioral distress within a dental appointment, compared to a traditional tell-show-do approach.

Parenting cognitions and treatment beliefs as predictors of experience using behavioral parenting strategies in families of children with attention-deficit/hyperactivity disorder.

We tested a model of mothers' parenting efficacy and attributions for child ADHD behaviors as predictors of experiences with behavioral treatment. The model proposed that mothers' beliefs regarding the acceptability and effectiveness of behavioral strategies would intervene between mothers' cognitions about parenting and child behavior and their treatment experiences. Participants were 101 mothers of 5- to 10-year-old children (82% male) with ADHD. Mothers reported their parenting efficacy and attributions for child behavior, and then received a single session of treatment teaching 2 behavior management strategies. Then, mothers reported their beliefs regarding the acceptability and effectiveness of these strategies. A follow-up phone interview 1 week later assessed mothers' experiences in using the behavioral strategies. The overall model fit the data. Attributions of child ADHD behavior as more pervasive, enduring, and within the child's control were related to seeing behavioral treatment as more acceptable, but neither attributions nor treatment acceptability predicted treatment experience. However, mothers with higher parenting efficacy viewed the behavioral strategies as more likely to be effective, and this pathway significantly predicted positive treatment experience. Implications for understanding the variables that contribute to parental decision-making and treatment participation for childhood ADHD are considered.

Parental social cognitions: considerations in the acceptability of and engagement in behavioral parent training.

Behavioral parent training (BPT) is a widely used, evidence-based treatment for externalizing child behaviors. However, the ability of BPT programs to be maximally effective remains limited by relatively low rates of acceptance, attendance, and adherence to treatment. Previous reviews have focused on a variety of demographic and mental health characteristics of parents and children that are predictive of poor outcomes in BPT. This paper focuses instead on consideration of parental social cognitions, and how incorporation of these cognitions may, or may not, be useful in advancing the effectiveness of BPT. We first review evidence suggesting limited incremental effects to incorporating parental cognitions within the context of BPT programs. Then, we examine the role of two particular types of parental social cognitions, attributions and parenting efficacy, in relation to the initial stages of accepting and engaging in BPT. We conclude by noting limitations in available research on the links between parental social cognitions and BPT, and we outline a number of potentially useful directions that may clarify whether or not parental social cognitions should be accorded greater attention either in the initial stages or throughout BPT programs.

Cultural variations in mothers' attributions: influence of child attention-deficit/hyperactivity disorder.

The attributions made by Chinese immigrant (n = 28) and Euro-Canadian (n = 27) mothers of 5- to 9-year-old boys regarding the causes of child prosocial and problem behaviors exhibited by children with and without attention-deficit/hyperactivity disorder (ADHD) were investigated. Mothers' attributions were elicited using audio-taped scenarios of child behavior. In one-half of the scenarios, the child was described as having ADHD. All mothers attributed less responsibility to the child or to the parent for problem behaviors when the child was described as having ADHD than when the child was described as not having a behavior disorder. Mothers also attributed prosocial child behaviors and the behavior of children without ADHD more to parental factors. In comparison to Euro-Canadian mothers, Chinese immigrant mothers saw children as less responsible for prosocial behavior. Mothers also completed a measure of beliefs about ADHD. Although there were some subtle cultural differences in these beliefs, mothers from both cultural groups endorsed generally accurate beliefs about ADHD. Implications for understanding the cultural uniqueness and similarities of maternal attitudes regarding child behavior and ADHD are discussed.