Ravert Russell D, Crowell Toni L
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.
J Clin Nurs. 2008 Nov;17(11c):318-28. doi: 10.1111/j.1365-2702.2008.02581.x.
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.
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.
Qualitative content analysis with a summative component was used.
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.
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.
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.
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.
本研究调查了囊性纤维化患者在万维网上披露自身疾病的情况，以更好地了解他们在整个生命周期各阶段的经历和需求。
披露自身慢性病通常是有目的的，因此研究这些披露情况能为了解个人经历和需求提供一个自然的窗口。本研究在基于互联网的慢性病研究中具有独特性，因为数据不仅限于与健康相关网站的互动，还包括在各种互联网环境中收集到的披露情况。
采用带有总结性成分的定性内容分析。
使用基于网络的搜索引擎识别所有包含短语“我患有囊性纤维化”和“我患有cf”的网页（n = 277）。采用持续比较分析方法确定背景的主题类别。运用定量方法研究这些披露声明分布中的年龄相关差异。研究结果在埃里克森生命周期心理社会理论框架内进行解读。
青少年（13 - 18岁）最常表达心理社会方面的担忧并寻求社会支持。新兴成年人（19 - 25岁）倾向于将囊性纤维化仅视为众多自我特征之一。成年人（>25岁）倾向于向其他囊性纤维化患者提供支持。
该研究确定了囊性纤维化患者在疾病披露类型上的年龄相关差异。它还表明，基于网络的慢性病研究不必局限于对特定疾病在线社区的分析。
研究结果表明，针对不同年龄段囊性纤维化患者的心理社会干预可能侧重于：（a）在青少年中促进社会支持并将疾病纳入其新兴身份认同；（b）支持新兴成年人展示自我并融入更大的社交网络；（c）与希望指导其他囊性纤维化患者的成年人合作。
