Explorations of the lived experiences and needs of individuals with adult-diagnosed Cystic Fibrosis

Abstract

Cystic Fibrosis (CF) is a genetic, multisystem disease (Elborn, 2016) 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 (Edwards et al., 2018). However, those with adult-diagnosed CF have highlighted that the supplied information tends to be targeted towards parents of children with CF, brief in nature, dated, and geographically limited (Widerman, 2002; Widerman, 2004). The current study examined the lived experiences and needs for individuals with adult-diagnosed CF. Participants (n = 17) included eight individuals diagnosed with CF as adults (Mage = 41.71, SD = 14.47) and nine health care providers (Mage = 45.35, SD = 7.91) recruited from CF clinics and chapters in Canada. Participants completed a brief demographic questionnaire, consent form, and individual semi-structured interview either via Zoom or telephone. Thematic content analysis was used to analyze the data collected for each participant group. Five major themes emerged from both patient and health care provider responses: (1) CF information needs; (2) challenges; (3) emotions and coping; (4) health service needs; and (5) Internet-delivered resource considerations. The findings highlight the unique experiences and challenges faced by those diagnosed with CF in adulthood. Information from the current study will be later used alongside the empirical literature to inform the development of an evidence-based, Internet-delivered resource for this population.