Impact of Intermediate Cystic Fibrosis Classification on Parents’ Perceptions of Child Vulnerability and Protectiveness

Audrey Tluczek*, Hara Levy, Michael J. Rock, Cissy Ondoma, Roger L. Brown

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

This cross-sectional, mixed-method study examined factors associated with parent perceptions of child vulnerability and protectiveness in three groups: cystic fibrosis (CF-group, n = 40), intermediate CF classification (I-group, n = 20), and healthy (H-group, n = 50). A composite indicator structural equation (CISE) using Bayesian estimation tested two mediational models: psychological and biological. Significant results (p <.05) from the psychological model showed I-group and CF-group parents perceived their children to be more vulnerable than H-group parents but reported lower levels of protectiveness than H-group parents. Perceptions of vulnerability mediated protectiveness for CF- and I-groups. The biological model showed I-group children had significantly less severe genotype and phenotype, and lower sweat chloride levels than the CF-group; I-group parents had lower expectations about children developing CF symptoms. Both models showed negative associations between children’s ages and protectiveness. Psychological factors explained perceptions of child vulnerability and protectiveness; biological factors explained protectiveness. Parent perceptions of vulnerability and protectiveness are separate, independent constructs.

Original languageEnglish (US)
Pages (from-to)287-313
Number of pages27
JournalJournal of Family Nursing
Volume25
Issue number2
DOIs
StatePublished - May 1 2019

Keywords

  • cystic fibrosis
  • parent perceptions of child vulnerability
  • parent protectiveness

ASJC Scopus subject areas

  • Community and Home Care
  • Family Practice

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