Browsing by Author "Dollimount, Anna"

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Open Access
Exploration of the Lived Experiences and Needs of Individuals with Adult-Diagnosed Cystic Fibrosis
(2023-11) Dollimount, Anna; Ram, Malina; Power, Hilary, A.; McKay, Corinne; Afseth, Niki; Genoe, Rebecca; Switzer, Heather; Tam, Julian; Wright, Kristi, D.
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).
Open Access
Explorations of the lived experiences and needs of individuals with adult-diagnosed Cystic Fibrosis
(Faculty of Graduate Studies and Research, University of Regina, 2023-08) Dollimount, Anna; Wright, Kristi; Klest, Bridget; Gallant, Natasha; Baydoun, Mohamad
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.