Personal Blame, Guilt, and Stigma in Lung Cancer

The psychosocial needs and experiences of those living with lung cancer have received relatively little attention compared with other cancer types, yet those with lung cancer suffer disproportionately from depression, anxiety, and other symptoms. Because 90% of cases of lung cancer are attributable to personal and controllable health behaviors such as smoking, lung cancer has been considered by many to be a stigmatizing disease. Understanding the degree to which those with lung cancer experience stigmatization is important, because feeling stigmatized or blamed may be linked with treatment noncompliance, avoidance of healthcare providers, or poor quality of life . In this study, we are working to distinguish between related constructs of personal blame, guilt, shame, and stigma in those living with lung cancer and to evaluate the impact of these experiences on psychological adjusment cross-sectionally and over time. We are also partnering with the national Lung Cancer Alliance to build a brief coping-skills training intervention to help those with lung cancer learn to manage personal feelings related to guilt & stigma and stigma-related encounters with friends, acquaintances, and healthcare providers.

  Randomized Pilot of an Internet-Based Social-Networking Intervention for Cancer Distress

The prevalence of clinically-significant distress is as high as 35% among those with a history of cancer. However, fewer than 15% have ever accessed professional or community-based support services. This is unfortunate, because meta-analyses and systematic reviews have consistently documented the efficacy of psychosocial interventions for improving quality of life and reducing symptoms of depression and pain. Although low utilization of psychosocial care is associated with both lack of interest and stigma related to mental health care, other prominent barriers impede access to care: lack of availability of services, distance required to travel to access psychosocial care, poor health status, and cost. Internet-based interventions have the potential to overcome some of these barriers, and early studies suggest potential efficacy.

In this study, we are evaluating a second-generation internet-based intervention that includes social-networking components, professional facilitation, and structured, empirically-supported intervention content. This study will evaluate outcomes and both behavioral and linguistic markers of psychological growth among cancer survivors with clinically-significant distress. Recruitment began on July 1, 2008.

  Psychological Adjustment to Lung Cancer

This is a multi-site longitudinal study of individuals recently diagnosed with lung cancer. Across men and women, lung cancer is the most commonly diagnosed cancer in the U.S. and accounts for 29% of all cancer deaths (ACS, 2008). Despite its high incidence and significant rate of morbidity and mortality, psychosocial concerns of lung cancer patients remain poorly understood relative to other cancers (Li & Girgis, 2006). Several large-scale studies of distress in lung cancer patients suggest that lung cancer patients have significant and potentially untreated psychosocial concerns. In a cross-sectional comparison of cancer types, Zabora and colleagues (2001) reported that levels of depression, anxiety, and hostility are higher among lung cancer patients than any other cancer type, and clinically significant levels of distress were found in over 43% of lung cancer patients. These findings echo earlier work demonstrating greater levels of physical, social, and psychological problems among lung cancer patients relative to other cancer types (Schag, Ganz Wing, Sim, & Lee, 1994). Because lung cancer is associated with greater levels of distress and quality of life impairments than other cancer types, efforts to identify efficacious and effective treatments to patient-based outcomes in those living with lung cancer are particularly important.

We are evaluating the effects of cancer-specific blame and guilt on adjustment to the disease over time, gender differences in coping, and the relationship between supportive care needs and satisfaction with care in this population. We soon hope to begin piloting a telephone and internet-based intervention for addressing unmet supportive care needs.