“If You Have CF, I Will Eat My Shoe”: Lived experiences and needs of individuals with adult-diagnosed cystic fibrosis

Abstract

RATIONALE: Cystic Fibrosis (CF) is a genetic, multisystem disease 1 that can be diagnosed in both childhood and adulthood. Diagnosis of CF during childhood is well-documented in the literature, and there is substantial information available for the parents of children with CF. 2 However, there is less known about the experiences of those with adult-diagnosed CF coupled with limited to no tailored resources for those who receive a later CF diagnosis. 3 , 4 OBJECTIVES The current study examined the lived experiences and information needs of individuals with adult-diagnosed CF in Canada, as well as attitudes toward receiving CF-related education via the Internet. METHODS Eight individuals diagnosed with CF as adults (M age = 41.71, SD = 14.47) and 9 health care providers (HCP; M age = 45.35, SD = 7.91) completed a brief demographic questionnaire, consent form, and individual semi-structured interview either via Zoom or telephone. Thematic analysis was used to analyze the data collected for each participant group. MAIN RESULTS: Five major themes were generated from both participant groups: (1) CF information needs; (2) challenges; (3) emotions and coping; (4) health service needs; and (5) Internet-delivered resource considerations. CONCLUSIONS The findings highlight the unique experiences and challenges faced by those diagnosed with CF in adulthood. Information from the current study will be used alongside the empirical literature to inform the development of an evidence-based, Internet-delivered resource for this population.