Developing and Evaluating a Stigma Scale for People with COPD

Abstract

Chronic obstructive pulmonary disease (COPD) is a prevalent respiratory disease and the third leading cause of death worldwide. Tobacco smoking is not only a major contributor to the prevalence of and high mortality in COPD, but a history of smoking predisposes people with COPD to being stigmatized. Stigma, like in anxiety and depression, can adversely affect psychological functioning and essential functions for disease management. Guided by “the conceptual model representing the effects of stigma processes on health,” this three-paper dissertation includes a) a systematic review of stigma in people with COPD compared to lung cancer-related stigma, b) a qualitative study to evaluate and refine a 52-item preliminary COPD stigma scale using cognitive interviewing, and c) a quantitative study to examine the validity and reliability of the refined COPD stigma scale. In a systematic review, people with COPD or lung cancer are similar in their perceptions of stigma: “they did it to themselves.” Studies have shown that lung cancer-related stigma is associated with patient outcomes including increased psychological distress, poor quality of life, low help-seeking, poor medication adherence, and low social support. A small number of qualitative studies have described the phenomenon of stigma in people with COPD, and less is known about COPD-related stigma in part because there are no existing measures of COPD-related stigma. In a qualitative study, nineteen people with COPD participated in semi-structured cognitive interviews to assess comprehension of the 52-item preliminary COPD stigma scale. Most questionnaire items were understood and interpreted as intended. Of 52 total items, one item was dropped because it was identified as so offensive that many subjects were reluctant to answer. Eleven items were revised to improve the flow of responses to the questionnaire. Regarding response options, subjects selected the mid-point (i.e., neutral) response for various reasons. The most frequent reason for choosing the mid-point response was “both equal parts of agree and disagree,” followed by “not applicable.” This qualitative study provided the foundation required for further revision and evaluation of the stigma questionnaire using psychometric methods. In the quantitative study, we identified the underlying structure and assessed the psychometric properties of the revised version of the COPD-related Stigma Scale. People with COPD (n = 148) participated in the mailed questionnaire, including the 51-item COPD-related Stigma Scale. The exploratory factor analysis indicated that the four-factor model with 28 items provided a good fit to the data with high internal consistency (α = 0.96). The COPD-related Stigma Scale estimated by 28 items was significantly correlated with other measures—chronic illness-related stigma, psychological distress, and physical function—establishing the construct validity of the scale. This finding provided the foundation required for the further evaluation of confirming the underlying structure of the COPD-related Stigma Scale. In conclusion, the findings in the studies above support that COPD-related stigma may adversely affect psychological and physical health. Researchers may consider further investigating the potential harmful effects of stigma on COPD management as well as developing strategies to reduce the negative influence of COPD-related stigma in this population.