title: Spontaneously published illness stories on a website for young women with breast cancer: do writers and themes reflect the wider population?
abstract: This study examined writer characteristics and themes written about in a set of 167 spontaneously published stories on a Dutch website for young women with breast cancer. The stories were coded for 6 disease characteristics and 16 themes. Coding results were compared with the characteristics of young women with breast cancer in a hospital cancer register and to the frequency of problems among young breast cancer patients participating in quantitative studies. We found that writer characteristics were diverse. Yet, logistic regression showed that women were more likely to be a writer if they were diagnosed at a younger age (OR 0.82; 95% CI (0.78, 0.85)), underwent a mastectomy (OR 4.63; 95% CI (2.59, 8.26)), or were in the first treatment period (OR 2.83; 95% CI (1.44, 5.58)). All 16 themes were present in the stories, but some themes were addressed less often than their frequency among participants of quantitative studies suggested. The findings indicate that a set of spontaneously published stories might not completely reflect the characteristics and themes of the wider population of young women with breast cancer. Websites with spontaneously published stories should inform readers about this.
authors.affiliation: Clinical Informatics Group, Leiden University Medical Center, Leiden, The Netherlands. roverberg@ggdkennemerland.nl
authors.forename: Regina
authors.initials: R
authors.lastname: Overberg
authors.forename: Andries
authors.initials: A
authors.lastname: De Man
authors.forename: Ron
authors.initials: R
authors.lastname: Wolterbeek
authors.forename: Wilma
authors.initials: W
authors.lastname: Otten
authors.forename: Bertie
authors.initials: B
authors.lastname: Zwetsloot-Schonk
mesh_terms: D000328:Adult; D001319:Authorship; D001943:Breast Neoplasms / Q000523:psychology* / Q000628:therapy; D016001:Confidence Intervals; D005260:Female; D006801:Humans; D020407:Internet; D016015:Logistic Models; D008875:Middle Aged; D009426:Netherlands; D016017:Odds Ratio; D063545:Personal Narratives as Topic