Development and Initial Validation of a Scale to Measure Shame in Patients With Cancer

In this project, we seek to develop and preliminarily validate a brief assessment tool to evaluate shame and embarrassment in patients with cancer. This three phase process will: (1) Begin with individual and group focused interviews with patients and oncology professionals; leading to (2) Item generation, and piloting ofthe items with a second sample of patients and finally, (3) The gathering of validity and reliability data on the instrument- crucial first steps in instrumentdevelopment. This final phase of cross sectional surveys will allow for an examination of reliability, internal consistency, and importantly, item reduction so that the measure will be useful and brief enough for clinical and research applications for patients with advanced disease. Additionally, by assessing patients with the tool and those that measure important related concepts, the beginnings of construct validity will be established. We have chose to study shame in advanced cancer. Shame has been called the "great sleeper of psychopathology", (Lewis, 1987). It has long been neglected by psychiatry and psychology for various reasons. Beginning in the 1970's empirical studies in shame underwent a tremendous expansion. Shame has been defined in various ways, but it is "generally recognized as a particularly intense and often incapacitating negative emotion involving feelings of inferiority, powerlessness, and selfconsciousness, along with the desire to conceal deficiencies" (Andrews, et aI, 2002). Shame has been described as both a primary affect (Tomkins, 1962-3, quoted in Morrison, 1989) and as a defense (Kohut, 1971-2, Lowenfeld, 1976, both quoted in Morrison, 1989). Shame has been postulated to playa role in depression (Morrison, 1989, Andrews and Hunter, 1997, Andrews, 1995, Andrews, et aI, 2002), bulimia (Andrews, 1997), post-traumatic stress disorder (Andrews, et aI, 2000) and alcoholism (Cooke, 1987). Embarrassment and humiliation are seen as similar constructs to shame. In embarrassment and humiliation though, there always has to be a second person involved. In other words, there always has to be a humiliator or witness to the person's humiliation or embarrassment. Embarrassment as an issue in patients with cancer has been neglected but commented upon by Dr. Ira Byock in his book Dying Well: Peace and Possibilities at the End of Life. In that book, Dr. Byock talks about his father's embarrassment at his illness and how that embarrassment led him to avoid his friends. He quotes his father as saying "I look sick, and 1think 1smell bad, sicklike, too"(Byock, 1997). In this way, Byock highlights how shame and embarrassment may be important aspects of distress in advanced cancer and an impediment to the delivery of palliative care. Empirical study of shame and embarrassment is a relatively recent development. Difficulties in measuring the construct has led, in part, to this delay (Tangney, 1996). Exploration has been aided by the introduction of a variety of shame measurement tools, (Tangney, 1996). However, existing studies on shame and embarrassment have been limited to health or psychiatrically ill populations. Our review of the literature revealed no empirical studies of shame and embarrassment in cancer patients or other medically ill populations. The focus of this proposal is to study shame and embarrassment in patients with cancer. By developing a valid instrument to assess shame and embarrassment in people with cancer, we can probe for answers to the following questions in future research. (1) Does being diagnosed with cancer induce shame? Are there differences in shame in different groups of cancer populations? For example, do lung cancer patients experience more shame if they feel their long history of smoking led to their terminal illness? (2) Does shame and embarrassment alter the course of illness, for instance, does shame and embarrassment lead to non-adherence with care or refusing intimate care? (3) What relationship, if any, exists between shame and embarrassment and future development of a major depressive disorder? (4) Does prominent shame and embarrassment make depression refractory to biological treatment such as antidepressants? (5) Is shame and embarrassment an issue for providers of care for patients with cancer? (6) How does shame and embarrassment effect the doctor/patient relationship? (7) How does shame and embarrassment affect quality of life in patients with cancer? (8) Is shame a greater problem as disease progresses? In summary, shame has been a long neglected symptom for a variety of reasons. Now that there is a theoretical and empirical momentum concerning shame and embarrassment, we feel it is time to turn to medically ill populations, in particular cancer patients, to further our understanding of ways to discover and treat the symptom and to explore it's impact on the patients' quality oflife and distress. To accomplish these goals, we will attempt to develop a clinically useful and statistically sound scale of shame and embarrassment in cancer. Phase 1 of the scale development will consist of an initial pool of items that will be generated through interviews with cancer patients and oncology clinicians. A minimum of twenty cancer patients who endorse a screening question suggesting problems with shame will be asked to participate in a semi-structured interview in which open-ended questions will be asked to elicit the causes, scope and consequences of shame and embarrassment. Additionally, twenty oncology clinicians will be asked to interview and give their responses to these same questions. Following the completion of these interviews, the answers to the focus interviews will be synthesized and a large pool of potential questionnaire items will be generated. This will serve as the beginning phase of scale construction. Phase 2 of scale development will involve the refining and editing of initial items by investigators. These items will then be administered to an additional sample of twenty cancer patients. The patients will be interviewed and a careful item by item review of the questionnaire will be conducted. This part of the study will allow for the items to be examined for clarity and comprehension. The scale items will be revised following evaluation of the interviews. Phase 3 of scale development will see the questionnaire administered to a sample of 100 cancer patients, along with a packet of measures meant to begin the process of norming and validating the tool. A special effort will be made to recruit approximately 25% of the patients with advanced disease ie, in Palliative Care or Hospice. The measures that will be used for this purpose include a Functional Assessment of Cancer Therapy Scale/Fatigue, Zung Self-Rating Depression Scale, the Internalized Shame Scale, the Experience of Shame Scale, and the ECOG Performance Status. In add~ti.on,. . Sociodemographic factors including age, education, marital status and hvmg s~tuatlOn will be collected. Information about the status of the neoplasm and other medIcal comorbidity, psychotropic medication use, and psychiatric treatment history will be recorded.