Exploration of the Lived Experiences and Needs of Individuals with Adult-Diagnosed Cystic Fibrosis

Abstract

Background: Most cases of cystic fibrosis (CF) are diagnosed in infancy, however rates of adult-diagnosed CF are increasing with 5-10% of CF cases being diagnosed in adulthood [1]. Our limited understanding of this subset of the CF population is based on dated literature [2-3] and an up-to date understanding of the experiences and needs of those diagnosed in adulthood is required in order to develop age-appropriate supports to navigate the disease [4]. The purpose of present study was to examine the lived experiences and needs of those diagnosed with CF in adulthood from multiple vantage points (i.e., those with CF and CF health care providers). Methods: A qualitative research design was used. Participants (n = 16) included adults with CF (n = 8, Mage = 41.71, SD = 14.47), and interdisciplinary CF health care providers (n = 8, Mage = 46.29, SD = 7.93) recruited from CF clinics and chapters in Western Canada. Participants completed a brief demographic questionnaire and a semi-structured interview. Individual interviews ranged from 30-60 minutes in length. Interview questions included general introductory questions about informational and service needs, as well as specific questions about the benefits and drawbacks of an Internet-based resource. All interviews were audio-recorded and transcribed verbatim. Results: A thematic content analysis was completed, and five major themes were uncovered: (1) CF information needs (i.e., limited information available, limited understanding of CF); (2) challenges of having CF (i.e., diagnosis challenges, treatment challenges, social challenges); (3) emotions related to CF and coping (i.e., feeling overwhelmed, angry, worried, guilty); (4) health service needs (i.e., access, physical health, mental health); (5) online resource considerations (i.e., benefits, drawbacks, key components). Conclusions: The results highlight that those diagnosed with CF in adulthood require tailored information in crucial areas (i.e., disease knowledge, challenges, emotions, coping strategies, resources). The results also indicate that individuals with adult-diagnosed CF are in favor of information provision via an Internet-delivered resource. Information gathered from the study will be employed to inform the development of a tailored resource to address information and support needs. Acknowledgements: Supported by the Social Sciences and Humanities Research Council (SSHRC) and the SK Centre for Patient-Oriented Research (SCPOR).