“I am not CF, I have CF”: Social Connection and Isolation During Young Adulthood With Cystic Fibrosis

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Doctor of Social Work (DSW)
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cystic fibrosis
social connection
social isolation
chronic illness
young adulthood
qualitative research
grounded theory
Clinical and Medical Social Work
Social and Behavioral Sciences
Social Work
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Historically, individuals living with cystic fibrosis (CF) gathered strength and support attending summer camps, support groups, and community events. However, in 2003, medical guidelines recommended stringent separation of individuals with CF to reduce the risk of cross-infection and disease progression. This study seeks to examine the impact of these recommendations on the social experiences of young adults with CF. A qualitative, exploratory, grounded theory approach was employed to understand the experience of young adults living with CF, with specific emphasis on the impact of social connection and isolation on their lives. Semi-structured individual interviews were conducted with ten young adults aged 18 – 25 diagnosed with CF. An interview guide was used to elicit information about how individuals with CF understand, experience, and perceive contact and social isolation from others with CF, ways in which they experience their social worlds, and the impact isolation from others with CF has on their medical and psychosocial development during the young adult years. Interviews were digitally recorded, transcribed verbatim, and coded using grounded theory’s constant comparative method. Analysis identified the importance of social connection and isolation as a common theme, supported by young adults’ use of social media, familiarity with the infection prevention and control guidelines, relationships with their siblings, the value of their friendships, and supported autonomy. Participants struggled to define normal in their daily lives. Increased social work practitioners’ awareness of ways to support young adults with chronic illness to engage with the CF community may improve health and mental health outcomes.

Allison Werner-Lin, PhD
Maya Doyle, PhD
Michael S. Schwartz, MD
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