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PREFERENCES FOR DISCLOSING ADVERSE CHILDHOOD EXPERIENCES FOR CHILDREN AND ADULTS WITH CYSTIC FIBROSIS
  • +1
  • Wadsworth Williams,
  • Manu Jain,
  • Theresa Laguna,
  • Susanna McColley
Wadsworth Williams
Northwestern University Feinberg School of Medicine
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Manu Jain
Northwestern University
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Theresa Laguna
Ann and Robert H Lurie Children's Hospital of Chicago
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Susanna McColley
Ann & Robert H.Lurie Children's Hospital of Chicago
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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.

Peer review status:ACCEPTED

11 Oct 2020Submitted to Pediatric Pulmonology
12 Oct 2020Submission Checks Completed
12 Oct 2020Assigned to Editor
12 Oct 2020Reviewer(s) Assigned
06 Dec 2020Review(s) Completed, Editorial Evaluation Pending
06 Dec 2020Editorial Decision: Revise Minor
11 Dec 20201st Revision Received
12 Dec 2020Submission Checks Completed
12 Dec 2020Assigned to Editor
12 Dec 2020Reviewer(s) Assigned
20 Dec 2020Review(s) Completed, Editorial Evaluation Pending
21 Dec 2020Editorial Decision: Accept