FOCUSING ON THE UNIQUE LIFE-CYCLE: SOCIAL WORK KNOWLEDGE IN PROMOTING INDIVIDUAL LIFE CHANGES AND HUMAN RIGHTS

The Experience of Receiving a Diagnosis of Cystic Fibrosis After Age 20: Implications for Social Work

Eileen Widerman, PhD, MSW

SUMMARY. 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, ...

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