title: The experience of receiving a diagnosis of cystic fibrosis after age 20: implications for social work.
abstract: Using the phenomenological approach of Van Manen, this study explored the lived experience of receiving a diagnosis of cystic fibrosis as an adult. Ten essential themes were generated from the stories of 36 participants: Awareness of Death, Change, Difference, Distraction, Family Indifference, Intrusion, Isolation, Normalizing, Time, and Uncertainty. Themes associated with gender, illness severity, and medical care were also developed. Although themes were similar to those in the chronic illness literature, late-diagnosis of CF was found to be a unique experience. Participants sought personal relationships with caregivers and educational materials targeted to their needs. Implications for social work are discussed.
authors.affiliation: Temple University, School of Social Administration, 1301 Cecil B. Moore Avenue, Ritter Annex, 5th Floor, Philadelphia, PA 19122-6091, USA. eileen.widerman@temple.edu
authors.forename: Eileen
authors.initials: E
authors.lastname: Widerman
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000523:psychology*; D005260:Female; D006801:Humans; D008016:Life Change Events; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D012737:Sex Factors; D012947:Social Work; D014342:Truth Disclosure; D014481:United States