Tara Perloff1, Jennifer C King1, Maureen Rigney2, Jamie S Ostroff3, Megan Johnson Shen4. 1. Department of Science and Research , Lung Cancer Alliance , Washington , DC , USA. 2. Department of Support Initiatives , Lung Cancer Alliance , Washington , DC , USA. 3. Department of Psychiatry & Behavioral Science , Memorial Sloan Kettering Cancer Center , New York , NY , USA. 4. Department of Medicine , Weill Cornell Medicine , New York , NY , USA.
Abstract
Objectives: Historically, long-term survival following diagnosis of lung cancer has been a rare occurrence. An overall poor prognosis and the low likelihood of long-term survival are thought to precipitate survivors experiencing what is referred to as survivor guilt. This study explored the prevalence and nature of survivor guilt among lung cancer survivors. Methods: Lung cancer survivors (n = 108) completed an online survey through a national organization's online community platform. This survey included a commonly used measure of survivor guilt targeting lung cancer and a single item that asked about whether they had experienced survivor guilt associated with lung cancer. Additionally, survivors were asked to provide open-ended descriptions of survivor guilt. In-depth thematic analysis was used to analyze these in-depth responses from those with the highest guilt scores on the survey measure (top quartile). Results: Survey responses revealed a majority of study respondents endorsed survivor guilt with 55% reporting an experience of survivor guilt associated with lung cancer. In addition, 63.9% of respondents scored above the mean on the survivor guilt scale. Qualitative analysis revealed five recurring themes among respondents with the highest survivor guilt scores (top quartile): 1) mentioning the death of others, 2) questioning "why not me?" 3) the role of the passage of time on emotions experienced, 4) the role of demographic and clinical characteristics' on survivor guilt, and 5) strategies for coping with survivor guilt. Conclusions: This study identifies survivor guilt in lung cancer survivors and raises clinical awareness that managing survivor guilt is a psychosocial challenge for lung cancer survivors. Results highlight the need for addressing this critical issue.
Objectives: Historically, long-term survival following diagnosis of lung cancer has been a rare occurrence. An overall poor prognosis and the low likelihood of long-term survival are thought to precipitate survivors experiencing what is referred to as survivor guilt. This study explored the prevalence and nature of survivor guilt among lung cancer survivors. Methods:Lung cancer survivors (n = 108) completed an online survey through a national organization's online community platform. This survey included a commonly used measure of survivor guilt targeting lung cancer and a single item that asked about whether they had experienced survivor guilt associated with lung cancer. Additionally, survivors were asked to provide open-ended descriptions of survivor guilt. In-depth thematic analysis was used to analyze these in-depth responses from those with the highest guilt scores on the survey measure (top quartile). Results: Survey responses revealed a majority of study respondents endorsed survivor guilt with 55% reporting an experience of survivor guilt associated with lung cancer. In addition, 63.9% of respondents scored above the mean on the survivor guilt scale. Qualitative analysis revealed five recurring themes among respondents with the highest survivor guilt scores (top quartile): 1) mentioning the death of others, 2) questioning "why not me?" 3) the role of the passage of time on emotions experienced, 4) the role of demographic and clinical characteristics' on survivor guilt, and 5) strategies for coping with survivor guilt. Conclusions: This study identifies survivor guilt in lung cancer survivors and raises clinical awareness that managing survivor guilt is a psychosocial challenge for lung cancer survivors. Results highlight the need for addressing this critical issue.