Descriptions of the Pain Experience in Adults and Adolescents with Cystic Fibrosis

Background: People living with cystic fibrosis experience pain that is associated with decreased quality of life, poorer health outcomes, and increased mortality. Though pain is highly prevalent as a symptom, it is currently unknown how persons with CF describe their pain experiences or the ways those experiences impact their lives. Aims: To explore and describe ways adolescents and adults with CF experience pain. Design/Setting/Subjects/Methods: An exploratory descriptive design was implemented to perform interviews with 10 individuals with CF and self-reported moderate to severe pain. The interviews explored their pain experiences within five domains: Pain Characteristics, Activities, Relationships, Work/School Life, and Health Care Team. Transcribed interviews underwent a content analysis with team-based constant comparisons. Results: Individuals with CF identify the disease as being painful; express how pain negatively affects all aspects of their lives, including loss of functionality and productivity; and are able to disclose their pain to those with whom they have relationships. Adolescents feel an emotional toll from the loss of socialization as a result of pain and feel their health care team adequately supports their pain. Adults express a unique emotional pain component to CF and feel stigmatized and unsupported by their health care team when asking for pain management solutions. Conclusion: There are differences in how pain is perceived by adolescents and adults with CF that have otherwise not been reported in the current literature. Further explorations of pain across the lifespan and health care provider attitudes toward pain management are needed to guide the development of effective pain management interventions for those with CF.