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Parenting Children with Cystic Fibrosis: Developmental Acquisition of Expertise

Audrey Tluczek1, Rachel Grob2, Emily Warne2

  • 1University of Wisconsin-Madison, School of Nursing.

Journal of Developmental and Behavioral Pediatrics : JDBP
|May 18, 2022
PubMed

Insights

Parents managing children with cystic fibrosis (CF) develop expertise, but clinicians often overlook invisible caregiving tasks. This highlights needs for better support and recognition in pediatric chronic illness management.

Area of Science:

  • Pediatric Healthcare
  • Family Caregiving
  • Chronic Illness Management

Background:

  • Cystic Fibrosis (CF) requires extensive daily management by parents.
  • Understanding parental experiences is crucial for improving care quality and identifying service gaps.

Purpose of the Study:

  • To explore parents' experiences managing children's CF needs.
  • To identify potential gaps in services for families affected by CF.

Main Methods:

  • Grounded dimensional analysis of anonymous survey data.
  • Utilized data from the Patient and Family Experience of Care (PFEC) survey.
  • Included 80 parents/caregivers of children with CF (under 18) from 125 US CF centers.

Main Results:

  • Parents' expertise grows with their child's development and health changes.
  • Parental expertise in managing CF is not always recognized by clinicians.
  • Visible expertise includes at-home treatments; invisible expertise encompasses emotional and social support.

Conclusions:

  • Findings enhance understanding of parental CF experiences across childhood.
  • Results guide future quality improvement and research in pediatric chronic conditions.
  • Online surveys are effective for identifying unmet needs in families with chronic childhood illnesses.
Abstract

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