Publication Date

2015-12-02

Availability

Embargoed

Embargo Period

2017-05-25

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PHD)

Department

Psychology (Arts and Sciences)

Date of Defense

2015-11-05

First Committee Member

Alexandra Quittner

Second Committee Member

Neena Malik

Third Committee Member

Matthias Salathe

Fourth Committee Member

Rebecca Shearer

Fifth Committee Member

Brian Doss

Abstract

Poor treatment adherence is a significant challenge for patients, parents, and healthcare providers. Treatment adherence is a serious concern for adolescents with cystic fibrosis (CF), a life-limiting genetic disorder affecting multiple organ systems. Although some barriers to adherence have been documented in CF, little is known about how these barriers interact at an individual level. The purpose of this study was to conduct a mixed-methods analysis of barriers to adherence reported by adolescents and young adults with CF and their parents. This study utilized qualitative interviews and quantitative measures of adherence and psychosocial functioning to identify key barriers in relation to adherence behaviors. Interviews were conducted with 18 adolescents/young adults with CF and 17 of their caregivers (17 dyads). Participants were asked to rate the severity of the barriers they generated immediately after the interviews. Patients completed a 3-day phone diary to capture treatment adherence. Patients and parents completed quantitative measures of family conflict, depression, anxiety, and health-related quality of life. Interviews were analyzed utilizing grounded theory method; six major themes emerged during the analysis. There were important differences between the most frequently occurring barriers and the barriers identified as most severe. This study highlighted the range of barriers to adherence for adolescents/young adults with CF and the importance of capturing barrier frequency and severity separately.

Keywords

cystic fibrosis; adherence; adolescents; young adults; barriers

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