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 implementing screening. Educating patients, parents, and providers about ACEs and appropriate interventions when ACES are identified is needed for both research and clinical applications of ACEs screening.

journal_name

Pediatr Pulmonol

journal_title

Pediatric pulmonology

authors

Williams WA 2nd,Jain M,Laguna TA,McColley SA

doi

10.1002/ppul.25243

subject

Has Abstract

pub_date

2020-12-26 00:00:00

eissn

8755-6863

issn

1099-0496

pub_type

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