Evaluation of a Video-Based Education Intervention for Parents of Children Undergoing Fontan Surgery: A Cluster Randomized Controlled Trial.

Background: Fontan surgery is performed at 2-4 years of age and is the third planned surgical intervention for children with a univentricular heart. Major challenges for children and parents after Fontan include (a) psychological distress, (b) prolonged pleural drainage, and (c) the need for postoperative anticoagulation. The aim of this study was to evaluate a pre-Fontan video-based intervention for parents to address these challenges. Methods: This study is a single-centre mixed-methods cluster randomized controlled trial. The intervention consisted of 3 brief whiteboard videos offered online from preadmission clinic to 1 month postoperatively. The parent's State Trait Anxiety Inventory score and the child's Post Hospital Behaviour Questionnaire score were measured 1 week and 1 month postoperatively. Semistructured interviews were conducted to obtain parental feedback on the videos. Results: We enrolled 26 children (13 female patients; 16 intervention group) and 1 parent per child. Mean State Trait Anxiety Inventory scores were similar between groups at both 1 week (52.8 vs 55.5, P = 0.25) and 1 month postoperatively (50.9 vs 53.9, P = 0.25). Post Hospital Behaviour Questionnaire scores were in the maladaptive range but did not differ between groups. Parents agreed or strongly agreed that the videos were helpful but should be provided earlier in the preoperative process. The main value of the videos was recognized as being a method for standardizing information provided to parents. Conclusions: A video-based education intervention did not impact State Trait Anxiety Inventory or Post Hospital Behaviour Questionnaire scores. However, the majority of parents agreed that the videos were helpful.

Contexte: L'opération de Fontan est réalisée à l'âge de 2 à 4 ans et constitue la troisième intervention chirurgicale planifiée chez les enfants qui présentent un ventricule unique. Les enfants et leurs parents font face à des défis importants après une opération de Fontan, dont a) la détresse psychologique, b) le drainage pleural prolongé et c) la nécessité de recourir à une anticoagulothérapie après la chirurgie. Notre étude visait à évaluer une intervention éducative préopératoire sous forme de vidéos présentées aux parents afin de leur permettre de mieux relever ces défis. Méthodologie: Nous avons mené un essai monocentrique à méthodes mixtes et à répartition aléatoire par grappes avec groupe témoin. L'intervention éducative consistait en une série de trois courtes vidéos sur tableau blanc disponibles en ligne à partir de la consultation clinique de préadmission et jusqu'à un mois après la chirurgie. Les scores des parents à l'inventaire d'anxiété situationnelle et de trait d'anxiété (State Trait Anxiety Inventory) et les scores des enfants à l'évaluation du comportement suivant l'hospitalisation (Post Hospital Behaviour Questionnaire) ont été mesurés une semaine et un mois après l'opération. Des entrevues semi-dirigées ont été réalisées afin de recueillir les commentaires des parents au sujet des vidéos. Résultats: Nous avons recruté 26 enfants (dont 13 filles; 16 enfants ont été affectés au groupe d'intervention éducative) et un parent pour chacun des enfants. Les scores moyens obtenus au State Trait Anxiety Inventory étaient comparables entre les deux groupes une semaine (52,8 vs 55,5, p = 0,25) et un mois (50,9 vs 53,9, p = 0,25) après l'opération. Les scores obtenus au Post Hospital Behaviour Questionnaire se situaient dans la fourchette des comportements mésadaptés, mais ne différaient pas entre les groupes. Les parents étaient d'accord ou fortement d'accord pour dire que les vidéos étaient utiles, mais qu'elles auraient dû être offertes plus tôt dans le processus préopératoire. La valeur principale des vidéos était selon eux qu'il s'agissait d'un moyen d'uniformiser l'information transmise aux parents. Conclusions: Une intervention éducative sous forme de vidéos n'a pas eu d'incidence sur les scores obtenus au State Trait Anxiety Inventory ou au Post Hospital Behaviour Questionnaire. Toutefois, la majorité des parents ont trouvé que les vidéos étaient utiles.

Strategies to maintain a family-centered care approach in the era of COVID-19: Experiences of a Canadian pediatric cardiology program.

The COVID-19 pandemic has resulted in strict provincial guidelines to prevent its spread. Physical distancing requirements, the postponement of elective pediatric cardiac surgeries and non-invasive cardiac interventions, and hospital visitor restrictions have significantly impacted services provided by our pediatric cardiac program. Rapid modifications to current inpatient and outpatient practices were required to maintain a family-centered care approach. Strategies our team used to maintain a family-centered care approach focused on six key areas including inpatient care, outpatient pediatric cardiology clinics, family meetings, discharge planning and teaching, the connection of inpatient pediatric patients to the outside world, and social support. The majority of our strategies are adaptable to other pediatric cardiology programs and some may prove useful after the pandemic and as restrictions lift. These strategies each have their own limitations and challenges that must be considered when adapting them to other pediatric cardiology programs and continuing their use after the pandemic has resolved.

Parental Vigilance in Caring for Their Children with Hypoplastic Left Heart Syndrome.

Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving treatments. Parents experience numerous challenges as they learn to parent a child with complex care requirements. The following research question guided this qualitative study: Is the parenting process among parents of a child with HLHS characterized by exaggerated vigilant parental action, and if so, how does this influence parental response? Situated within a larger program of pediatric cardiology research, this study included data from two grounded theory studies with parents of children with HLHS. This secondary analysis involved a thematic content analysis using sensitizing concepts of uncertainty, protectiveness, support, and mastery of complex care. Transcribed data from 55 interviews with 24 mothers and 17 fathers of young children with HLHS were analyzed for relevant and recurring themes. In mastering skills required to care for their child with HLHS, parents contrasted what was in their hands with what was out of their hands. Vigilant parental actions were evident as parents became skilled at providing complex care. Parents said they were sometimes excessive in their vigilant actions. In retrospect they viewed this vigilance as appropriate in some situations but exaggerated in other situations. Understanding parents' vigilant actions in response to their child's complex care can guide health care providers' interactions with families. Long-term follow up, both clinically and through research, is needed to assess the long-term consequences of exaggerated vigilant parental action on the child, parent, and family, and to determine and evaluate appropriate and timely intervention.