Author of

• 11001

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  P1.24 - Poster Session 1 - Clinical Care (ID 146)

  • Event: WCLC 2013
  • Type: Poster Session
  • Track: Supportive Care
  • Presentations: 1
  • Moderators:
  • Coordinates: 10/28/2013, 09:30 - 16:30, Exhibit Hall, Ground Level

  • 11013

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    P1.24-012 - How to Build a Better Lung Cancer Support Group: Best practices from Australia, the United Kingdom and the United States (ID 1019)

    09:30 - 09:30  |  Author(s): M. Rigney
    • Abstract

    Background
    Research shows that people diagnosed with lung cancer experience high levels of distress and that their unmet physical and emotional needs are greater than those diagnosed with other types of cancer. One significant unmet need for lung cancer patients is social support. An important way for patients to connect and to know they are not alone is through face-to-face support groups. The benefits to cancer patients attending such groups go beyond support and may include increased feelings of control and confidence and a decrease in depression and distress. For many reasons, the majority of lung cancer patients prefer lung cancer-specific support groups rather than those for all cancers. However, facilitators report that starting and maintaining lung cancer groups is often a challenge. As a result, the number of such groups is insufficient to meet the need. Cancer charities play an important role in fostering lung cancer support groups by directly running groups or supporting those who do. Toward the goal of increasing the number and viability of these groups, a study was conducted to understand the challenges related to starting and sustaining lung cancer support groups and the solutions successful facilitators have found to overcome those challenges.

    Methods
    To understand the challenges of lung cancer specific support groups and how to overcome them, a literature review of research about cancer support groups was conducted. Lung cancer support group faclitators in Australia, the United Kingdom and Australia were surveyed and in-depth interviews were conducted on a sample. Program evaluation data from 37 groups in the UK was also included.

    Results
    An international guide to lung cancer support groups best practices was developed. The guide provides solutions suitable for all facilitator skill levels and addresses resource constraints that facilitators may face. The solutions presented are designed to assist anyone interested in running a successful lung cancer support group anywhere in the world. A second phase of the research will involve formative research to determine desirability and feasibility of adopting best practices in a sample of control groups in the United States that were not involved in the initial survey and interviews. Those results will be presented at future conferences.

    Conclusion
    People with lung cancer can benefit from in-person support groups in immeasurable ways but many do not have access due to the lack of available groups. While challenges to initiating and maintaining successful lung cancer specific support groups exist, expert facilitators have found creative ways to advertise their groups, keep participants engaged and their groups thriving. With the information provided, professionals at charities and treatment facilities interested in starting lung cancer support groups will know what to consider as they organize their groups and will have at the ready tried and true techniques for making their groups successful. Charities not able to run their own groups will learn the importance of disseminating this information to facilitators as well as understand how to best support them to reach the goal of increasing the number of lung cancer-specific support groups.

• 11946

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  P2.24 - Poster Session 2 - Supportive Care (ID 157)

  • Event: WCLC 2013
  • Type: Poster Session
  • Track: Supportive Care
  • Presentations: 1
  • Moderators:
  • Coordinates: 10/29/2013, 09:30 - 16:30, Exhibit Hall, Ground Level

  • 11958

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    P2.24-012 - Public Attitudes about Lung Cancer: Stigma, Support, and Predictors of Support (ID 895)

    09:30 - 09:30  |  Author(s): M. Rigney
    • Abstract

    Background
    Lung cancer is the leading cause of cancer death yet public engagement with efforts against lung cancer is low. Public engagement with a cancer is critical to efforts to combat it yet the reasons for low support for efforts against lung cancer have not been systematically characterized.

    Methods
    We conducted a telephone survey of 1,071 people to determine levels of engagement and attitudes that might potentially drive engagement. These were then analyzed by univariate and multivariate analysis.

    Results
    8% of participants were involved with a lung cancer organization and 12% chose it among cancers to receive more support. Most participants felt that lung cancer was principally caused by external factors, that it could be cured if caught early, and that lung cancer patients were at least partly to blame for their illness. In multivariate analysis, participants who were supportive in some way of efforts against lung cancer were more likely to be employed, live in suburbia, and to be unsure of the cause of lung cancer. Potential supporters were more likely to be employed, female, younger, have higher income, to believe that genetics is the primary cause of lung cancer and to believe that lung cancer can be cured when caught early. Participants frequently noted that they supported a particular cancer because of knowing someone affected. Full demographic, univariate, and multivariate data will be presented.

    Conclusion
    As the lung cancer movement attempts to grow and increase its impact, the most successful recruitment efforts will be targeted to these groups.

• 12853

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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): M. Rigney
    • 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.