Nemours/Alfred I. duPont Hospital for Children, Delaware
Dr. Erica Sood, Primary Investigator
Research Project: Incorporating parent perspectives in the development of a family-based psychosocial intervention in a pediatric cardiac center
For the 15,000 infants each year in the United States who require cardiac surgery, the ﬁrst months of life involve emergent admissions to the cardiac intensive care unit, invasive procedures and prolonged hospitalizations during which parents may not be able to feed, comfort or even hold their baby. Parents of infants with congenital heart disease (CHD) live with tremendous stress and, for many, this stress persists well beyond the time of diagnosis and surgery. Parental medical traumatic stress, a set of psychological and physical responses (i.e., intrusive thoughts, avoidance, negative mood, hyperarousal) to the child's illness, medical procedures, and frightening treatment experiences, can have serious and lasting effects on the family environment, placing already vulnerable children at even higher risk for developmental and behavioral problems.
No studies have identiﬁed the speciﬁc psychosocial needs of families in the months following infant cardiac surgery, and structured programs targeting the unique needs of families of infants with CHD have never been developed or tested. Evidence-based, culturally-competent, psychosocial interventions are needed to optimize the outcomes of these medically fragile children and their families. By engaging parent stakeholders in the process of intervention development, the resulting intervention will be feasible, acceptable and meaningful to families of diverse backgrounds and can lead to necessary improvements in child and family psychosocial health. The proposed study will 1) document parent perspectives on the psychosocial needs of families of infants with CHD and the potential impact of a family-based psychosocial intervention, and 2) develop and pilot a brief psychosocial intervention for parents of infants with CHD to prevent medical traumatic stress and enhance family functioning. Twenty parents of children with CHD will participate in qualitative interviews regarding the psychosocial needs of families following infant cardiac surgery and the potential impact of a psychosocial intervention. Purposive sampling will ensure representation of both mothers and fathers from diverse backgrounds. Themes from the analyzed interview data will be used to develop a psychosocial intervention to prevent medical traumatic stress and enhance family functioning. The intervention will be piloted with eight families in the weeks following infant cardiac surgery to evaluate preliminary feasibility and acceptability. This project will result in a psychosocial intervention for families of infants with CHD that can be further tested through a randomized clinical trial and then disseminated for use across hospitals in order to improve family-centered care and enrich the lives of children with CHD and their families.