App targets mental health after prenatal diagnosis of congenital heart disease
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A psychosocial intervention delivered via a mobile app reduced distress and helped prepare pregnant women and their partners after a fetal diagnosis of congenital heart disease, according to data from a pilot study.
A prenatal diagnosis of congenital heart disease often leads to anxiety, depression and traumatic stress in expectant parents, with long-term implications for the child and family, Erica Sood, PhD, a pediatric psychologist in the Nemours Cardiac Center at Nemours Children’s Hospital, Delaware, and director of the Nemours Cardiac Learning and Early Development (LEAD) Program, and colleagues wrote in an abstract presented at NeoHeart 2022. To address mental health concerns, Sood and colleagues worked with parent stakeholders to develop an accessible psychosocial intervention delivered via mobile app.
“Pregnancy is a vulnerable time for mental health in general, with higher rates of anxiety and depression, and when a fetus is diagnosed with a congenital heart defect, we see those rates double or even triple,” Sood told Healio. “My research has focused on the needs of parents of children with congenital heart disease. We have heard repeatedly that families feel they receive excellent medical care, but the emotional aspects are not a focus.”
Connecting families, addressing stressors
In a pilot study, Sood and colleagues analyzed data from 33 pregnant women with a fetus diagnosed with complex congenital heart disease, recruited from Nemours Children’s Health in Delaware and Florida. The HEARTPrep app was delivered in English and Spanish via Nemours App, a mobile app for telehealth and patient education.
HEARTPrep consists of three modules: adjusting to news of a diagnosis; connecting with support networks; and preparation, with a focus on stressors families are likely to face once the infant is born. Each module has six elements, including normalizing common emotions after a diagnosis, the role of cultural beliefs and faith and peer-to-peer support, Sood said. The intervention was delivered through one-on-one telehealth sessions and a series of videos featuring other parents discussing their experiences.
“We worked with parents from diverse backgrounds across the United States to determine what do we need to do during the pregnancy to impact those long-term outcomes,” Sood said in an interview.
Completers participated in at least three of 12 telehealth sessions and rated acceptability and feasibility through a Likert scale (0 “not at all,” to 4 “very”) and open-ended questions.
Within the cohort, 30 parents enrolled and 25 completed the HEARTPrep program; half of partners (52%) also participated.
Most parents (95%) reported they “very” much liked using an app for psychosocial intervention, felt comfortable participating, and would recommend HEARTPrep to others.
Reduced distress, isolation after intervention
Most reported that HEARTPrep “very” much helped them feel less distressed (80%), less isolated (90%), more prepared (95%) and more hopeful (90%), according to the researchers.
Responses indicated the opportunity to process emotions, develop coping skills, navigate relationships and connect with peer support were most impactful, Sood said.
“Because this is something not commonly done in fetal cardiology, we wanted to know, do families find this acceptable?” Sood told Healio. “We found that people were happy with the program; our mean score was 3.79 out of 4. Participants appreciated the ability to just talk to someone who knew about congenital heart disease and guide them through the emotional aspects and the ability to connect with other parents via the video series.”
Sood said next steps include further testing of HEARTPrep, developing a custom HEARTPrep dashboard with parent feedback, and a randomized controlled trial comparing HEARTPrep with standard fetal care, assessing immediate and long-term outcomes like anxiety and posttraumatic stress.
“There is a lot of interest in this approach within the field of fetal cardiology,” Sood said.
The American Heart Association recently addressed the psychological needs of people with congenital heart disease in a scientific statement published in July. As Healio previously reported, the authors wrote that the onus on accessing psychological care after a diagnosis of congenital heart disease should not be placed solely on the shoulders of patients and families.
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Sood E. HEARTPrep: A virtually delivered psychosocial intervention for mothers expecting a baby with congenital heart disease. Presented at: NeoHeart 2022; Aug. 3-6, 2022; Anaheim, California (hybrid meeting).
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