P0558 - Perception of Fathers of Hospitalized Children with Advanced Heart Disease

Background: Although survival of children with advanced heart disease (AHD) has been improving, long-term morbidity remains high, leading to chronic conditions. There is little data on the perspectives of fathers caring for chronically ill children. This study describes the experience and prognostic awareness of fathers of hospitalized children with AHD.

Methods: Cross-sectional survey study of parents caring for children hospitalized with AHD (age 30 d - 19 yr) admitted for ≥ 7 d between 2/18-2/19. Inclusion criteria: single ventricle, pulmonary vein stenosis, pulmonary hypertension, length of stay >30 d, mechanical support, mechanical ventilation >14 d, or ≥3 admissions/yr. One parent per patient completed surveys, which included mothers(128) and fathers(27). Data from the fathers’ surveys were analyzed using descriptive methods.

Results: The 27 fathers enrolled at a median age of 34 yrs (range, 22 - 54) and 20/27 were married, with 70% identified as white. Median patient age was 2 yrs (IQR, 0-4) and 37% were in the CICU at time of survey. Diagnoses included single ventricle(10), pulmonary hypertension(5), other congenital(11), and transplant(1). All but one (96%) of the fathers surveyed thought they understood their child’s prognosis “extremely well” or “well,” and 59% thought that in the past week they were “very prepared” for the medical problems their child was experiencing. However, 56% of fathers wanted to know more about prognosis and 22% thought their child’s care team knew something about their child’s prognosis that they did not know. A little over half (52%) of fathers reported feeling unsure if their child was getting better or worse and 29% of fathers thought they received conflicting information from the healthcare team. Lifelong treatment for their child was felt to be necessary by 11 fathers, with physical activity restrictions noted by 7 and learning/development/behavior restrictions by 8. One third of fathers (35%) reported they had to tell health professionals medical details of their child’s condition because the health professionals did not seem to know. Of the 13 fathers who reported they had a conversation with their child’s healthcare team that included discussion of what would happen if their child got sicker, every father found this conversation helpful, although 9 (69%) reported it was “somewhat” or “a little” confusing. Nearly all felt that the conversation both allowed them to express their worries (95%) and that their worries were adequately addressed (95%).

Conclusion: Fathers report that they understand prognosis well, however, only half feel very prepared for the medical problems their child is experiencing. They feel supported in their worries, however many fathers consider lifelong limitations to be unlikely. Future research that explores potential differences in mothers and fathers will be beneficial in order to address specific educational needs of fathers.