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  P3.24 - Poster Session 3 - Supportive Care (ID 160)

  • Event: WCLC 2013
  • Type: Poster Session
  • Track: Supportive Care
  • Presentations: 1
  • Moderators:
  • Coordinates: 10/30/2013, 09:30 - 16:30, Exhibit Hall, Ground Level

  • 12854

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    P3.24-001 - Online support: Content analysis of a "safe" online haven for individuals affected by lung cancer (ID 38)

    09:30 - 09:30  |  Author(s): S. McClement
    • Abstract

    Background
    Smoking-related stigma may increase psychological distress and result in isolation and lack of communication, complicating attempts to mitigate stigma’s harmful effects felt by individuals dealing with lung cancer. However, monitored on-line communities ensure anonymity, foster positive coping through mutual support and negate feelings of being alone, allowing stigmatized individuals to reach out to ‘trusted others’ without fear of reprisal. This study explored the content and tenor of ‘naturally’ occurring communication in a monitored on-line lung cancer support community in the United States, as well as who uses the on-line support community and their issues and concerns.

    Methods
    This qualitative study comprised a convenience sample of archived on-line threaded messages posted in a monitored on-line lung cancer support community. A three phased content analysis approach was employed to analyze a sample of 688 pages (from a total of 4,916 pages) that contained threaded messages across two time periods: August to September 2008 and January to February 2009. Sixty-eight main posts and 586 replies in 344 pages for period one (262 users) and 55 main posts and 697 replies in 344 pages for period two (307 users) were analyzed. Themes capturing the issues, concerns, and emotions raised by community users were identified.

    Results
    Most of the 569 users were female, half were individuals diagnosed with lung cancer. Information requests and replies were often embedded within narratives of personal experiences with lung cancer and emotional support. Message tenor tended to be respectful, carefully crafted and even caveat-laden concerning personal experiences. An overarching sense of solidarity was evident in reflections of feelings, goals, responsibilities and interests in living with lung cancer. Nine major themes were captured from main posts and replies: Disease-related information, Diagnostic-related information, Treatment-related information, Symptoms and their meaning, Deterioration of health status, Advocacy, Experiences with health care providers/health care system, Survivorship issues, and Psychosocial concerns and feelings.

    Conclusion
    Individuals living with lung cancer freely shared their unmet needs consistent with those dealing with other types of cancer who receive on-line empathic support and guidance. A number of users expressed dissatisfaction and mistrust of health care providers due to their disengagement in providing timely support and practical information about diagnosis, prognosis, treatment effects and their lack of positive attitudes. Health care providers cannot address all information and emotional needs of diagnosed individuals and families due to the demands put on their time. But they can be encouraged by this study’s findings that suggest monitored on-line support communities serve as a complement to, not a replacement for, formal health care. Monitored on-line support communities can help individuals overcome frustrations and fears by serving as an added resource that helps them to communicate and ask questions of others who are in similar situations that, in turn, foster their control as partners with physicians in making decisions about their care.