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Parents of children with congenital heart disease want psychosocial support

Parents of children with congenital heart disease may benefit from psychosocial interventions, and these efforts may reduce the burden of parental mental health problems on child outcomes, according to results of a mixed-methods study published in The Journal of Pediatrics.

“The post-surgical recovery period for children with congenital heart disease is an incredibly stressful time for parents,” Erica Sood, PhD, pediatric psychologist at Nemours/Alfred I. duPont Hospital for Children’s Nemours Cardiac Center, said in a press release. “This research helps us understand how we can deliver the psychosocial supports parents need during stressful hospitalizations and after hospital discharge.”

According to Sood and colleagues, children with congenital heart disease are at an increased risk for behavioral and neurodevelopmental impairments that may impact quality of life, educational and occupational outcomes. Parents of this patient population experience a high prevalence of traumatic stress, depression and anxiety, and their overall mental health can serve as a potentially modifiable factor that can optimize outcomes for their children, the researchers noted.

Sood and colleagues collected data for 20 mothers and 14 fathers from a pediatric hospital in the Mid-Atlantic region. Participants’ children were aged between 1 and 3 years, diagnosed with congenital heart disease and underwent cardiac surgery at age 6 months or younger. They obtained qualitative data via excerpts from semi-structured interviews and based quantitative data on a card sort that determined parental priorities for the structure and goals of psychosocial programs.

Parents favored six broad themes regarding program goals, which they believed should incorporate the following:

• support partnerships in their child’s care;

• promote self-care;

• facilitate communication with providers;

• prepare parents for challenges after hospitalization;

• provide education about child neurodevelopment and

• help parents engage social support.

They also reported needing formalized support across care and brief intervention models, among several other interventions. A total of 94% of participants endorsed two or more goals and 27% endorsed all six goals, the researchers reported.

“Parental mental health programs are a critical component of congenital heart disease 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,” Colette Gramszlo, PhD, study author and pediatric psychology fellow at Nemours/Alfred I. duPont Hospital for Children, said in the release. “Hospitals should establish a formal process for offering this assistance to facilitate improved care, coordination and communication.” – by Joe Gramigna

Disclosures: The authors report no relevant financial disclosures.