'I have cystic fibrosis': an analysis of web-based disclosures of a chronic illness.
OBJECTIVE
This study examined instances where individuals with cystic fibrosis disclosed their illness on the World Wide Web, better understand their experiences and needs across stages of the lifespan.


BACKGROUND
Disclosing one's chronic illness is typically done purposefully, so examining those disclosures allows a naturalistic window into individuals' experiences and needs. This study is unique to Internet-based studies of chronic illness in that data are not limited to interactions at health-related websites, but include disclosure instances gathered across a variety of Internet contexts.


METHODS
Qualitative content analysis with a summative component was used.


METHODS
A web-based search engine was used to identify all web pages containing the phrases 'I have cystic fibrosis' and 'I have cf' (n = 277). Constant comparative analysis methods were used to identify thematic categories of context. Quantitative methods were used to examine age-related differences in the distribution of those disclosure statements. Findings were interpreted within a framework of Erikson's lifespan psychosocial theory.


RESULTS
Adolescents (13-18 years) most frequently expressed psychosocial concerns and enlisted social support. Emerging adults (19-25 years) tended to present cystic fibrosis as just one of many self-characteristics. Adults (>25 years) tended to reach out to support others with cystic fibrosis.


CONCLUSIONS
The study identified age-related differences in the types of illness disclosures found among individuals with cystic fibrosis. It also demonstrated that web-based research into chronic illness need not be limited to analysis of illness-specific online communities.


CONCLUSIONS
Findings suggest that psychosocial interventions for individuals with cystic fibrosis across the lifespan might focus on (a) facilitating social support and incorporating illness into one's emerging identity among adolescents, (b) supporting emerging adults in presenting and incorporating themselves into larger social networks and (c) partnering with adults who wish to mentor others living with cystic fibrosis.
Assistant Professor, Human Development and Family Studies, University of Missouri, Columbia, MO, USABlumenthal Fellow, Human Development and Family Studies, University of Missouri, Columbia, MO, USA.
Russell D
RD
Ravert
Assistant Professor, Human Development and Family Studies, University of Missouri, Columbia, MO, USABlumenthal Fellow, Human Development and Family Studies, University of Missouri, Columbia, MO, USA.
Toni L
TL
Crowell
D000293:Adolescent; D000328:Adult; D002908:Chronic Disease; D003550:Cystic Fibrosis / Q000523:psychology*; D030881:Disclosure; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D012944:Social Support; D055815:Young Adult
chronic illness; development; psychosocial adjustment