Identifying Factors that Facilitate Treatment Adherence in Cystic Fibrosis: Qualitative Analyses of Interviews with Parents and Adolescents
Cystic fibrosis (CF) is a progressive, genetic disease affecting multiple organ systems. Treatments are complex and take 2–4 h per day. Adherence is 50% or less for pulmonary medications, airway clearance, and enzymes. Prior research has identified demographic and psychological variables associated with better adherence; however, no study has extensively identified facilitators of treatment adherence (e.g., adaptive behaviors and cognitions) in a sample of parents and adolescents. Forty-three participants were recruited from four CF centers as part of a larger measurement study. Participants included 29 parents (72% mothers; 72% Caucasian) and 14 adolescents (ages 11–20, 64% female, 71% Caucasian). Participants completed semi-structured interviews to elicit barriers to adherence. However, facilitators of adherence naturally emerged, therefore indicating need for further exploration. Interviews were audiotaped, transcribed and content-analyzed in NVivo to identify those behaviors and beliefs that facilitated adherence, using a phenomenological analysis. Frequencies of these themes were tabulated. Nine themes emerged, with individual codes subsumed under each. Themes included social support, community support, organizational strategies, “intrinsic characteristics,” combining treatments with pleasurable activity, flexibility, easier or faster treatment, prioritizing treatments, and negative effects of non-adherence. Results demonstrated the importance of identifying strategies that positively affect adherence. Interventions that are strength-focused, build on prior success, and utilize positive models generated by those who have successfully integrated CF treatments into their lives are more likely to be efficacious.
KeywordsCystic fibrosis Facilitators Adherence Adolescents Parents
This study was funded by a CF Foundation Therapeutics grant to Alexandra Quittner (QUITTN14QI0).
Compliance with Ethical Standards
Conflict of interest
The authors Christina J. Nicolais, Ruth Bernstein, Estefany Saez-Flores, Katherine A. McLean, Kristin A. Riekert, and Alexandra L. Quittner declare that they do not have any conflict of interest.
All procedures were in accordance with the ethical standards of the institutional research committees and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- Barker, D. H., Driscoll, K. A., Modi, A. C., Light, M. J., & Quittner, A. L. (2012). Supporting cystic fibrosis disease management during adolescence: The role of family and friends. Child: Care, Health and Development, 38(4), 497–504.Google Scholar
- Cystic Fibrosis Foundation (CFF) (2016). Patient Registry Annual Data Report 2015. Bethesda, MD.Google Scholar
- Madan, A. S., Alpern, A. N., & Quittner, A. L. (2014). Transition from paediatric to adult cystic fibrosis care: A developmental framework. European Respiratory Monograph, 64, 272–285.Google Scholar
- McLean, K. A., Alpern, A. N., Madan, A., Riekert, K. A., & Quittner, A. L. (2015, October). Barriers to Treatment Adherence in Adolescents with CF and Their Parents: Qualitative Coding of Contextual Factors. The 29th Annual North American Cystic Fibrosis Conference, Phoenix.Google Scholar
- The Building Adherence to Live With and Navigate my Cystic Fibrosis (CF) Experience (BALANCE) study. (2014). Retrieved from http://clinicaltrials.gov/ct2/show/ NCT01013896. (Identification No. NCT01013896).