Parenting stress and parental post-traumatic stress disorder in families after pediatric heart transplantation

Background: There has been little research on the stress experienced by parents of children who have undergone heart transplantation. Methods: Parents of 52 consecutive pediatric heart transplant recipients completed questionnaires assessing illness-related parenting stress and post-traumatic stress symptoms,at a routine clinic visit. Medical charts were reviewed retrospectively to gather peri- and post-operative information. Results: The average age of patients at transplant was 12 years (range I to 18 years), and participation occurred 3 months to 10 years post-transplant (median 2.5 years). Nearly 40% of parents indicated moderately severe to severe post-traumatic stress symptoms. Ten of the 52 participating parents met DSM-IV-TR clinical diagnostic criteria for current post-traumatic stress disorder. Parents also identified significant levels of illness-related parenting stress in the areas of communication around the child's illness, emotional distress, managing the child's medical care, and balancing role functions. Conclusions: Illness-related parenting stress and post-traumatic stress symptoms are significant concerns among parents of pediatric heart transplant patients. Parents' psychologic functioning post-transplant should be routinely assessed and addressed by transplant teams.