Washington: According to a new study, Parents of children with congenital heart disease (CHD) want individualising, formal psychosocial support during their children in-hospital stays. The results of the study were published in the Journal of Pediatrics.
The study by researchers from Nemours Children's Health System outlines ways to optimise mental health for parents and mitigate the impact of stress on long-term outcomes for children and families. "The post-surgical recovery period for children with CHD is an incredibly stressful time for parents.
Uncertainty, communication challenges, and limited opportunities to engage in self-care can impact their mental health," said Erica Sood, PhD., senior author, and paediatric psychologist within the Nemours Cardiac Centre at Nemours/Alfred I. Dupont Hospital for Children.
"This research helps us understand how we can deliver the psychosocial supports parents need during stressful hospitalisations and after hospital discharge." CHD is the most common birth defect, often requiring extensive cardiac surgery in a child's first year of life. Children with CHD are at high risk for neurodevelopment and behavioural impairments, and researchers say promoting parental mental health can support positive outcomes for children with CHD and their families.
Using qualitative and quantitative methods to determine parental preferences for the goals and structure of psychosocial programs, researchers interviewed 34 parents (20 mothers and 14 fathers) of 21 young children with CHD.
Parents indicated that they want their child's medical team to support their psychosocial needs at each stage of care. Parents wanted psychosocial support to meet their unique needs through individualised programs delivered by nurses, physicians, psychologists, social workers, and peer mentors.
"Parental mental health programs are a critical component of CHD care to influence children's health outcomes, and families are interested in receiving this care in ways that support where they and their child are in their healing journey," said Colette Gramszlo, PhD, lead author and a paediatric psychology fellow at Nemours/Alfred I. Dupont Hospital for Children. "Hospitals should establish a formal process for offering this assistance to facilitate improved care, coordination and communication."
Parents recommended that psychosocial interventions should:
1) Support their partners in their child's care,
2) Promote their own self-care,
3) Facilitate communication with providers,
4) Prepare parents for challenges after hospitalisation,
5) Provide education about child neurodevelopment, and
6) Help parents engage with social support.
As a result of this research, the Nemours Cardiac Centre recently developed and tested a bedside tool to promote formal parent education and support in caring for their critically ill child. The tool provides a visual aide to empower parents to participate in their child's care through safe and developmentally appropriate activities.