Connectedness seems vital for positive outcomes in chronic conditions. People connect online everyday. For people with chronic lung diseases (CLD), connecting with other people, information, providers, and resources may be part of Health Co-Inquiry, with stakeholders activated toward person-centered collaborations, evidence-based practice, and integrated care. Using the Bifurcated (qualitative) Method, we studied publicly available (without a login/password) websites, blogs, and forums. Four major themes emerged from inductive, thematic analysis: providing information (100% saturation), social support/connectedness and/or connecting with a provider (35% saturation), personal stories (25% saturation), and advocacy (25% saturation). Furthermore, “asking questions” was an important element, cutting across themes and posts (40% saturation). We used a webcrawler as a cross-checking mechanism. This confirmed the most frequent words at the websites were related to lungs, health, CLD, COPD, and various symptoms, diseases, treatments, and stakeholders. Overall, organizations (whether for-profit, non-profit, or governmental) were the website hosts. Some sites allowed users to post, with persons with CLD posting most often. Recommendations include increasing connectivity by allowing stakeholders to post publicly or ask a question privately.

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Connections Online: Themes in Narratives of Stakeholders in Lung Disease

  • Camden L. Baucke,
  • Lauren S. Seifert

摘要

Connectedness seems vital for positive outcomes in chronic conditions. People connect online everyday. For people with chronic lung diseases (CLD), connecting with other people, information, providers, and resources may be part of Health Co-Inquiry, with stakeholders activated toward person-centered collaborations, evidence-based practice, and integrated care. Using the Bifurcated (qualitative) Method, we studied publicly available (without a login/password) websites, blogs, and forums. Four major themes emerged from inductive, thematic analysis: providing information (100% saturation), social support/connectedness and/or connecting with a provider (35% saturation), personal stories (25% saturation), and advocacy (25% saturation). Furthermore, “asking questions” was an important element, cutting across themes and posts (40% saturation). We used a webcrawler as a cross-checking mechanism. This confirmed the most frequent words at the websites were related to lungs, health, CLD, COPD, and various symptoms, diseases, treatments, and stakeholders. Overall, organizations (whether for-profit, non-profit, or governmental) were the website hosts. Some sites allowed users to post, with persons with CLD posting most often. Recommendations include increasing connectivity by allowing stakeholders to post publicly or ask a question privately.