Misunderstandings, misperceptions, and missed opportunities: Perspectives on adherence barriers from people with CF, caregivers, and CF team members

Cyd K. Eaton, Sara Beachy, Katherine A. McLean, Christina J. Nicolais, Ruth Bernstein, Estefany Sáez-Clarke, Alexandra L. Quittner, Kristin A. Riekert

Research output: Contribution to journalArticle

Abstract

Objective: To identify differences in perspectives of people with cystic fibrosis (PwCF) and caregivers versus healthcare providers on adherence barriers. Mismatched perspectives may lead to miscommunication and missed opportunities to reduce barriers and improve CF outcomes. Methods: PwCF, caregivers, and CF providers completed audio-taped, semi-structured interviews about adherence barriers. Interviews were transcribed and coded for themes. Themes were reviewed to identify when PwCF-caregiver perspectives differed from providers’. Results: Participants included 14 adolescents with CF (mean age = 15.89 years, 64 % female, 71 % Caucasian), 14 adults with CF (mean age = 30.03 years, 64 % female, 57 % Caucasian), 29 caregivers (76 % female; 72 % Caucasian), and 42 providers. Four barriers were identified that could generate miscommunication between PwCF-caregivers and providers: Tired = Fatigued/Sleepy versus Tired = Burnout, Vacation and Travel, Knowledge and Skills About CF Regimen, and Daily Habits or Routines. PwCF and caregivers used similar words as providers, but conceptualized barriers differently. PwCF and caregivers discussed barriers pragmatically, however, providers viewed certain barriers more abstractly or unidimensionally, or did not discuss them. Conclusions: PwCF-caregivers and providers may not align in how they discuss barriers, which may contribute to miscommunication about adherence challenges. Practice implications: Patient-centered communication strategies may enhance providers’ understandings of PwCF-caregiver perspectives on barriers and facilitate adherence interventions.

Original languageEnglish (US)
Pages (from-to)1587-1594
Number of pages8
JournalPatient Education and Counseling
Volume103
Issue number8
DOIs
StatePublished - Aug 2020

Keywords

  • Adherence
  • Barriers
  • Caregivers
  • Cystic fibrosis
  • Patients
  • Providers
  • Qualitative themes

ASJC Scopus subject areas

  • Medicine(all)

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