The association between lung cancer stigma and race: A descriptive correlational study

Abstract Background Stigma is a formidable burden for survivors of lung cancer that can reduce the quality of life (QOL), resulting in physical, social and psychological challenges. This study investigates associations between stigma and depression, QOL and demographic and health‐related characteristics, including race. Design An adapted conceptual model derived from the Cataldo Lung Cancer Stigma Scale guided this descriptive correlation study assessing stigma in African American and Caucasian survivors of lung cancer. Self‐reported, written surveys measuring depression, QOL, lung cancer stigma and demographics were administered. Statistical analysis was conducted to assess associations between stigma and depression, stigma and QOL and stigma and race, while adjusting for demographic characteristics. Results Participants (N = 56) included 30 Caucasian and 26 African American survivors of lung cancer recruited from a cancer registry of an American College of Surgeons‐accredited programme, a survivors' support club and an ambulatory oncology practice in the southeastern United States. Statistical analysis yielded (1) a significant moderate positive association between depression and lung cancer stigma; (2) a significant moderate negative association between QOL and lung cancer stigma; and (3) significant relationships between race and lung cancer stigma, specifically higher degree of stigma among African Americans compared to Caucasians. Conclusion Stigma affects many aspects of survivors' lives. Healthcare professionals need to consider how health‐related stigma may further complicate the physical burdens, psychological distresses and social challenges that accompany the disease, especially among African American survivors. Additional enquiry and interventions are needed to assist with mitigating the negative effects of stigma on survivors and their family members and friends. Patient or Public Contribution Fifty‐six survivors of lung cancer participated in this descriptivecorrelation study. They completed written surveys measuring depression, QOL, and lung cancer stigma, plus an investigator‐developed demographic information form.


| INTRODUCTION
Lung cancer is the second most prevalent cancer in men and women and the leading cause of cancer deaths in the United States. 1,2 The lung cancer incidence and mortality rate have declined due to early screening and improved treatment modalities. 1 Mortality is directly related to stage at diagnosis because lung cancers diagnosed at early stages are more amenable to curative resection. 1 This disease remains a major concern because of its far-reaching negative effects on survivors' overall QOL. [3][4][5][6][7][8][9][10] Survivors of lung cancer, defined from the time of diagnosis to the end of life, experience significant physical symptom burden, social challenges and psychological distresses. 10,11 Survivors of lung cancer face stigma related to their diagnosis.
Stigma is an 'undesirable stereotype leading people to reduce the bearer from a whole and usual person to a tainted, discounted one.' 12 A health-related stigma is the perception of a behaviour that is considered unfavourable and yields an adverse result. In the case of lung cancer, the health-related stigma is the perception that an individual with lung cancer has smoked or currently smokes cigarettes because tobacco is the leading cause of lung cancer. 4,[13][14][15][16] United States Surgeon General reports have documented strong evidence that tobacco is an individual and environmental health hazard. 17 These reports have heightened public awareness of the links between chronic and debilitating disease processes and the behaviour of cigarette smoking. Public awareness of the hazards of smoking has led to the thought that this behaviour is an unacceptable 'choice' and no longer a societal norm. 18 This leads to the ostracization of smokers and to victim-blaming of those who formerly or currently smoke despite its known hazards. 19,20 Lung cancer stigma's layered effect on survivors can impact many aspects of their lives. Survivors who fear being stigmatized may distance themselves and refuse to disclose their illness to others, which can result in social isolation, psychological distress and delays in diagnosis and treatment. 4,9,[19][20][21] Evidence exists that stigma is an important predictor of delayed medical help-seeking behaviours. 22 When individuals with a potential lung cancer delay seeking help from healthcare providers, the probability of a late-stage diagnosis increases. 22 These effects of stigma, in turn, have a negative impact on physical health, intensifying the burden of symptoms such as shortness of breath, fatigue, insomnia and pain; the cycle continues, as physical symptoms negatively impact lung cancer survivors' ability to deal with psychological and social challenges-with all these factors together adversely affecting overall QOL and chance of survival. [4][5][6][7][13][14][15][16][17][19][20][21][22][23] In 2011, the Cataldo Lung Cancer Stigma Scale (CLCSS) became the first psychometrically tested instrument specifically designed to assess lung cancer stigma. 15 The original psychometric testing was conducted on an online sample primarily consisting of Caucasian participants (86%); no African Americans were represented in the testing. 15 This original evaluation yielded strong internal consistency (a Cronbach's α of .96), and construct validity was confirmed with correlational analysis among similar variables: depression, QOL, anxiety and social isolation. 15 Since its development, the CLCSS has been used in more racially diverse samples. However, the African American representation in those studies has still been low, thus limiting knowledge related to lung cancer stigma among this minoritized population of lung cancer survivors. 4,16,17,24 Lung cancer mortality is higher among African Americans than in Caucasians. 1  2. There will be a statistically significant positive association between lung cancer stigma and depressive symptoms.
3. There will be a statistically significant negative association between lung cancer stigma and QOL.
4. There will be a statistically significant relationship between lung cancer stigma and African American race, adjusting for demographic variables.

| Design
This descriptive correlational study was guided by an adaptation of a lung cancer stigma conceptual model proposed by Cataldo et al. 14 Cataldo and colleagues' model posits that lung cancer survivors perceive societal attitudes relative to smoking and a lung cancer diagnosis.
Survivors are aware of potential or actual behaviours shown by others and by feelings that may occur because of this perception. This may lead to feelings that negatively change their identity to one of stigma and shame. The perceptions and feelings of survivors are associated with depression and lower QOL and therefore affect survival rates.

| INSTRUMENTS
A demographic form was used to collect information, including gender, age, race, annual household income, year of cancer diagnosis, self-rated health status, smoking status, educational attainment and employment status. Race was self-reported and was examined because lung cancer mortality rates are currently the highest among African Americans in the United States. These data allowed for evaluation of race-a social construct serving as a proxy measure of exposure to racism and related structural inequities-and the ways in which it may influence lung cancer survivors' experiences and outcomes. 25 In addition, three instruments were used to measure variables of interest.

| Stigma
The CLCSS is a 31-item, 4-point Likert scale that evaluates stigma. 15 The original psychometric testing was conducted by Cataldo et al. 14,15 Exploratory factor analysis identified four domains: stigma and shame, social isolation, discrimination and smoking. Reliability was established by a coefficient α of .96 for the entire scale.

| Depression
The Center for Epidemiologic Studies Depression Scale (CES-D) is a 20-item, nondiagnostic, self-report scale. 26 The instrument assesses several domains of depression, including depressed mood, feelings of guilt and worthlessness, feelings of helplessness and hopelessness, psychomotor hindrances, loss of appetite and sleep disturbance. 26 This instrument has been shown to be reliable across gender, race and age, with a high internal consistency, ranging from 0.85 to 0.90. 26 Scores for this instrument range from 0 (indicating low depressive symptoms) to 60 (high depressive symptoms).  sample. Means were compared using t tests or one-way analysis of variance as appropriate. The CLCSS was reverse-scored and averaged. The CES-D was scored and averaged according to the Center for Epidemiologic Studies' guidelines. Participants' QOL was calculated by applying linear transformation to two global health questions. Construct validity of the CLCSS was evaluated using correlational analysis, which examined the linear relationship between lung cancer stigma and depressive symptoms, and between lung cancer stigma and self-rated health. General linear models were used to estimate the association between lung cancer stigma and race, with other demographic characteristics added as covariates in separate models testing each of these additional characteristics individually. Factor and covariate model effects were applied using the general linear model option in SPSS. Due to the reduced sample size and subsequent reduction in power, multiple bivariable models were run initially, which included race plus another single demographic variable, using lung cancer stigma as the dependent variable.

| Data analysis
Using an α cut point of .05 from the bivariable models, we  Table 1).

| Analysis
The CLCSS had a Cronbach's α of .96, indicating very good internal consistency. Correlational analysis yielded a statistically significant moderate positive association between stigma and depression (r = .345, p = .005) and a statistically significant moderate negative association between stigma and QOL (r = −.303, p = .012). These findings support hypotheses 1-3 (see Table 2). The average stigma score for Caucasian participants was lower than the average stigma score for African Americans (as shown in Table 2).
The independent t test showed a t value of −3.3 (p = .002) and an η 2 of 16%, indicating that race had a huge effect on the mean stigma scores. Race and gender were found to be insignificantly related to depression and QOL (see Table 3).  Table 4).

| Evaluation of the CLCSS
In this study, the CLCSS was found to be a reliable and valid instrument   22 This study demonstrated that lung cancer stigma has a significantly moderate negative association with QOL.

| Relationship of stigma with depression and QOL
Chambers et al. 5 found that lung cancer stigma had an adverse effect on overall QOL in their systematic review. Cataldo et al. 14 obtained the same finding and indicated that stigma was a major contributor to the variance in QOL. Given that survival rates are increasing among lung cancer survivors, it is essential to consider the effect of lung cancer stigma, including the effect that it has on overall QOL, along with the daily challenges faced by these individuals.

| Relationship of stigma with demographic characteristics
In this study, African Americans reported higher lung cancer stigma and depression scores compared to Caucasians and race significantly accounted for the variance in lung cancer stigma scores. Comparatively, the average overall QOL among African Americans was higher than for Caucasians in this study. This may be due, at least partly, to how QOL is calculated with this instrument. 15

CONFLICTS OF INTEREST
The authors declare no conflicts of interest.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.