PREFERENCES FOR DISCLOSING ADVERSE CHILDHOOD EXPERIENCES FOR CHILDREN
AND ADULTS WITH CYSTIC FIBROSIS
Abstract
Introduction: The 2017-2018 National Survey of Children’s Health
estimates that 30 million (42%) US children have experienced at least
one adverse childhood experience (ACE), including abuse, neglect, and
household dysfunction. ACEs negatively impact long-term health, and
there has been no study of ACEs in cystic fibrosis (CF). We assessed
willingness to disclose ACEs experienced by children with CF by
surveying their parents and adults with CF. Methods: We anonymously
surveyed parents of children with CF and adults with CF at the
Northwestern University/ Lurie Children’s CF Center to determine their
willingness to disclose ACEs. Results: The survey was completed by
46/157 (29%) parents and 36/105 (34%) adults with CF. Few parents
(22%) and adults (17%) were willing to discuss most or all specific
ACEs, more were willing to disclose the number of ACEs experienced in a
category (57% parents, 47% adults), and the majority were willing to
participate in anonymous research about ACEs (76% parents, 67%
adults). Most parents (63%) and adults (50%) would prefer to have ACEs
screened separately from their CF appointment, and most parents (63%)
and adults (56%) wanted to learn more about ACEs from a member of their
care team. Conclusions: Participants preferred to disclose the number of
categorical ACEs rather than specific ACEs and most were open to
participating in anonymous ACEs research. More research is needed before
widespread adoption of ACE screening in CF.