Measuring Stigma in People with Lung Cancer

Measuring Stigma in People with Lung Cancer
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Instrument (Psychometric) Development Article Questions
1. Can you tell from the title that this research study is going to be about developing and testing a new instrument?
2. Who are the intended participants?
3. Is the sample size adequate to produce accurate results? (Not in a pilot test).
4. What is the number of questions on the initial scale/instrument before any psychometric testing?
5. Did the authors use test-retest for reliability comparing for stability over time?
6. What is the Cronbach’s a reported for the instrument as a whole and for any factors (subscales)?
7. How were the different kinds of validity measured? What validity measures did the author(s)’ report?
8. On the final instrument, what were the final # questions?

E46 Vol. 38, No. 1, January 2011 • Oncology Nursing Forum
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L ung cancer is the leading cause of cancer deaths
in men and women in the United States (Centers
for Disease Control and Prevention, 2010).
Compared to patients with other types of cancer,
patients with lung cancer experience the
greatest amount of psychological distress (Else-Quest,
LoConte, Schiller, & Hyde, 2009; Holland et al., 2010;
Zabora, BrintzenhofeSzoc, Curbow, Hooker, & Piantadosi,
2001) and have a higher risk for psychological
distress during and after treatment (Akin, Can, Aydiner,
Ozdilli, & Durna, 2010; Carlsen, Jensen, Jacobsen, Krasnik,
& Johansen, 2005). Psychological distress is a strong
predictor of lung cancer mortality (Hamer, Chida, &
Molloy, 2009).
Health-related stigma (HRS) is a perceived stigma that
has been defined as a personal experience characterized
by exclusion, rejection, blame, or devaluation that
results from anticipation of an adverse judgment. This
judgment is based on an enduring feature of identity
conferred by a health issue; the judgment is medically
unwarranted and may adversely affect health status
(Weiss & Ramakrishna, 2006). HRS has been associated
with an increase in the stress associated with illness
and contributes to psychological, physical, and social
morbidity (Major & O’Brien, 2005). HRS has been extensively
studied in patients with HIV and AIDS, mental
illness, epilepsy, and physical disability (Van Brakel,
2006), but not in patients with lung cancer.
Stigma in lung cancer is based on the belief that the
patient’s behavior was the cause of the cancer (i.e., by
smoking). Few studies have examined the presence of
HRS in patients with lung cancer or its effect on patient
outcomes because tools to measure lung cancer stigma
did not exist (Van Brakel, 2006). In one study of the
meaning of illness, women with lung cancer experienced
a range of disruptions in quality of life (QOL),
Measuring Stigma in People With Lung Cancer:
Psychometric Testing of the Cataldo Lung Cancer
Stigma Scale
Janine K. Cataldo, RN, PhD, Robert Slaughter, PhD, Thierry M. Jahan, MD,
Voranan L. Pongquan, RN, MPH, and Won Ju Hwang, RN, MPH
Purpose/Objectives: To develop an instrument to measure
the stigma perceived by people with lung cancer based on
the HIV Stigma Scale.
Design: Psychometric analysis.
Setting: Online survey.
Sample: 186 patients with lung cancer.
Methods: An exploratory factor analysis with a common
factor model using alpha factor extraction.
Main Research Variables: Lung cancer stigma, depression,
and quality of life.
Findings: Four factors emerged: stigma and shame, social
isolation, discrimination, and smoking. Inspection of unrotated
first-factor loadings showed support for a general
stigma factor. Construct validity was supported by relationships
with related constructs: self-esteem, depression, social
support, and social conflict. Coefficient alphas ranging from
0.75–0.97 for the subscales (0.96 for stigma and shame,
0.97 for social isolation, 0.9 for discrimination, and 0.75
for smoking) and 0.98 for the 43-item Cataldo Lung Cancer
Stigma Scale (CLCSS) provided evidence of reliability. The
final version of the CLCSS was 31 items. Coefficient alpha
was recalculated for the total stigma scale (0.96) and the
four subscales (0.97 for stigma and shame, 0.96 for social
isolation, 0.92 for discrimination, and 0.75 for smoking).
Conclusions: The CLCSS is a reliable and valid measure
of health-related stigma in this sample of people with lung
cancer.
Implications for Nursing: The CLCSS can be used to
identify the presence and impact of lung cancer stigma and
allow for the development of effective stigma interventions
for patients with lung cancer.
and more than a third of the sample associated lung
cancer with negative meaning (Sarna et al., 2005). The
purpose of this study was to psychometrically develop
and evaluate an instrument to measure stigma as perceived
by patients with lung cancer.
Oncology Nursing Forum • Vol. 38, No. 1, January 2011 E47
Background
Health-Related Stigma
HRS refers to a perceived stigma that is both a
trait and the outcome of being known to possess that
trait (Heijnders & Van Der Meij, 2006). The effects of
perceived stigma depend on whether patients hold
themselves or if others hold the patients responsible
for the disease and whether the disease leads to serious
disability, disfigurement, lack of control, or disruption
of social interactions (LoConte, Else-Quest, Eickhoff,
Hyde, & Schiller, 2008). The association of stigma with
HIV and AIDS has been well established. Stigma in
people with HIV is associated with emotional distress,
anxiety, depression, poor self-esteem, limited sources
of social support, relationship issues, concealment of
disease after prognosis, poor adherence to treatment, increased
disability, and diminished QOL (Berger, Ferrans,
& Lashley, 2001; Stutterheim et al., 2009; Ware, Wyatt,
& Tugenberg, 2006). Lung cancer can conjure a similar
attribution of blame as that found with HIV or AIDS
because lung cancer often is associated with smoking
cigarettes (Marlow, Waller, & Wardle, 2010).
Conceptual Framework
Based on a conceptual model of perceived stigma,
Berger et al. (2001) developed the items for the HIV
Stigma Scale. This model was adapted to patients with
lung cancer and was used to guide the development of
the Cataldo Lung Cancer Stigma Scale (CLCSS). The
perceived stigma of lung cancer occurs in the context of
two factors: a person’s perception of societal attitudes
toward both smoking and lung cancer and a personal
knowledge of having lung cancer (see Figure 1). Perceived
stigma associated with having lung cancer is
conceptualized as the person’s awareness of their lung
cancer as it relates to actual or potential social disqualification,
limitations in opportunities, and negative changes
in social identity. Perceived stigma can lead to several
negative outcomes, including increased psychosocial
symptom burden and increased physical symptom burden.
Although HRS has not been measured in patients
with lung cancer, findings from one qualitative study
suggest that this patient population often feels “victimized”
or excluded by support systems, which results in
strained social relationships (Greene & Banerjee, 2006).
HRS ascribed to controllable factors (e.g., smoking)
elicits a greater negative reaction than stigma ascribed
to uncontrollable factors (e.g., genetics) (Hegarty &
Golden, 2008; Lebel & Devins, 2008). In HIV and other
diseases, the negative effects of HRS appear to be related
to the level of responsibility that the patient assigns
to his or her disease (Raleigh, 2010). Lung cancer can
conjure up a similar attribution of blame as that found
with HIV (Greene & Banerjee, 2006). Although HIV
often is associated with homosexuality and IV drug
use, lung cancer is associated with smoking cigarettes.
Whether patients are smokers or not, because smoking
is a proven cause of lung cancer, it is perceived to be a
controllable factor and a behavior that can be associated
with lung cancer stigma (Lebel & Devins, 2008).
Tobacco Smoking and Stigma
The effects of HRS are related to the level of responsibility
that a patient assigns to his or her disease. A greater
negative reaction occurs when factors that contribute to
a disease, such as smoking, can be associated with HRS
(LoConte et al., 2008). Stigmatization of patients with
lung cancer is, in part, a consequence of the demoralization
of tobacco smoking (Bayer & Stuber, 2006; Bell,
Salmon, Bowers, Bell, & McCullough, 2010). Smokers
have become a marginalized part of society (Stuber,
Galea, & Link, 2008); current and former smokers have
identified several factors that contribute to the perception
of stigmatization in smokers: perceptions of smoking as a
choice and not an addiction, fear that secondhand smoke
harms children, discrimination perpetrated against smokers
through no-smoking policies, and low education
levels associated with smokers (Stuber et al., 2008).
Precursors
• Perceptions of societal attitudes toward
smokers and people with lung cancer
• Knowledge of self as having lung cancer
Perceived Stigma of Having Lung Cancer
Aware of actual or potential:
• Social disqualification (social isolation subscale)
• Limited opportunities (discrimination subscale)
• Negative change in identity (stigma and shame
and smoking subscales)
Possible Responses
• Physical reactions
– Physical symptom burden
• Emotional reactions
– Change in self-concept
– Psychosocial symptom burden
– Use of techniques to avoid or minimize
stigma (e.g., information control, avoidance
and withdrawal, tension reduction)
• Redefined world view or priorities
Figure 1. Model of Health-Related Stigma
in Patients With Lung Cancer
Note. From “Measuring Stigma in People With HIV: Psychometric
Assessment of the HIV Stigma Scale,” by B. Berger, C. Ferrans,
and F. Lashley, 2001, Research in Nursing and Health, 24, p. 520.
Copyright 2001 by John Wiley and Sons. Adapted with permission.
E48 Vol. 38, No. 1, January 2011 • Oncology Nursing Forum
Cancer and Stigma
Stigma has been found to be related to a deficit in
knowledge about cancer, disease prevention, and risk
(Rosman, 2004). Several studies indicate that patients
with cancer feel stigmatized because of their disease
(Wilson & Luker, 2006). The reasons for stigmatizing
patients with cancer are many, but, if the patient is of
the same age and gender of the healthcare provider, the
perception of similarity is likely, and a tendency exists
to attribute the disease to the patient’s characteristics,
personality, and lifestyle to reduce the personal threat to
the provider (Greene & Banerjee, 2006). Stigma related
to disease has been identified as a significant barrier to
health promotion (Corrigan & Watson, 2007).
Lung Cancer Stigma
Whether they smoked or not, patients with lung cancer
have reported stigmatization (Chapple, Ziebland,
& McPherson, 2004). Patients with lung cancer have a
high risk for psychological issues after diagnosis and
treatment (Carlsen et al., 2005). In a study of cancerrelated
stigma by Else-Quest et al. (2009), patients with
lung cancer were more likely than patients with breast
or prostate cancer to report internal causal attributions
for their cancer. Blame often has been cited as a major
stressor of having lung cancer (Carmack et al., 2008;
Marlow et al., 2010).
Because of the lack of a valid and reliable measure,
empiric evidence of lung cancer stigma is limited. A
qualitative study by Chapple et al. (2004) found that
patients with lung cancer experience guilt and shame
as a result of the stigmatization of lung cancer as a
self-induced disease. Although stigma has not been
measured in patients with lung cancer, findings from
one study suggest that these patients often feel victimized
or excluded by support systems, which results in
strained social relationships (Greene & Banerjee, 2006).
In addition, patients may fear the loss of health insurance
and employment as a result of disclosure of their
cancer diagnosis (Greene & Banerjee, 2006; Wilson &
Luker, 2006).
Methods
Design and Procedures
This was an exploratory study using a convenience
sample and a self-administered questionnaire. The
study procedures and materials were approved by the
university institutional review board. Participants received
a $10 gift card.
Sample Recruitment
The sample was recruited online. Web-based, online
data collection creates opportunities to conduct research
among difficult to access populations. However, special
consideration was given to how the study would be advertised
and how the data were collected to ensure highquality
data, privacy protection, and validity of findings
(Cantrell & Lupinacci, 2007). When constructed with the
right controls (i.e., encryption), participant anonymity is
enhanced, decreasing social response set and researcherinfluenced
bias (Rhodes, Bowied, & Hergenrather, 2003;
SurveyMonkey®, 2009). As recommended in Rhodes
et al. (2003), support was elicited from the Web site
administrators in advertising the study to increase the
response rate, data fields were designated as optional or
not optional, and all instruments and the consent form
were formatted into an individual active HTML Web
page with encryption. Because of the sensitivity of the
data, a contract was made with SurveyMonkey for an
extra service that allowed for data collection in a totally
encrypted environment. Postings of an active link to
the study’s home page were established on Web sites
frequented by potential study participants, including
LUNGevity, American Lung Association, Lung Cancer
Alliance, and the American Cancer Society’s Cancer
Survivor Network.
The first draft of the online survey was reviewed
for edits by the site administrators before posting. The
posting included an introduction to the study, Health
Insurance Portability and Accountability Act regulations
and pledge of anonymity, the researcher’s contact
information, and a direct link to the questionnaires.
The posting made participants aware of any potential
risks that existed in data security violations associated
with providing online information, and that submission
of the completed questionnaires implied that they
had read the consent form and that they consented to
participate in the study. The Internet data were properly
secured when stored on a computer and a passwordaccessed
server. Data were collected as a spreadsheet
and remained anonymous with no information linking
questionnaires and participants.
Instruments
Cataldo Lung Cancer Stigma Scale: Seven experts
in stigma from the disciplines of sociology, psychology,
oncology, and nursing were asked to serve as content
reviewers. Berger et al.’s (2001) model of perceived
stigma in people with HIV was modified for use in
patients with lung cancer. According to the procedure
recommended by Lynn (1986), reviewers were asked to
evaluate how well each of the items tapped the concept
of stigma in people with lung cancer in terms of an
item’s clarity and relevance to the concept of stigma.
Items rated as not relevant or needing major revision
were rejected. Reviewers also were asked to judge the
comprehensiveness of the item pool and were invited to
suggest new items or content areas to fill any gaps they
Oncology Nursing Forum • Vol. 38, No. 1, January 2011 E49
perceived. Items rejected by more than one of the seven
reviewers were discarded or rewritten. Of the 45 items
in the CLCSS submitted to content experts in the first
round, eight were discarded. The 37 remaining items
were retained unchanged or were revised slightly to
improve clarity. Nine additional items were submitted
to the reviewers and then added to the 37 remaining
items for a total of 46 items. Each stigma item was measured
using a four-point Likert-type scale ranging from
1 (strongly disagree) to 4 (strongly agree). Reading level,
using the Flesch-Kinkaid Index (Software Q, 1990), was
assessed and found to be at the fifth-grade level.
Self-esteem: The Rosenberg Self-Esteem Scale
(RSES) was used to measure self-esteem. Respondents
rated each of the 10 self-esteem items on a four-point
scale. The possible scores ranged from 10–40, with
higher scores indicating higher self-esteem. A wide
variety of analyses have supported the RSES’s validity
(Wiley, 1989). The RSES has demonstrated consistent
acceptable internal consistency reliability (coefficient
alphas of 0.72–0.87). For the current sample, the coefficient
alpha for the RSES was 0.89.
Depression: The Center for Epidemiological Studies–
Depression Scale (CES-D) is a valid and reliable
tool that has been widely used for self-ratings of depression
in clinical populations, including people with
cancer and people with HIV and AIDS (Hoover et al.,
1993). Participants were rated on a four-point scale
ranging from 0 (rarely or none of the time) to 3 (most
or all of the time). The overall score was calculated by
summing the ratings of 20 items, so the possible range of
score was 0–60. Higher scores indicated greater depression.
A score of 16 or higher is generally used to indicate
depression. For the current sample, the coefficient alpha
for the CES-D was 0.91.
Social support and social conflict: The Social Support
indices from the Multicenter AIDS Cohort Coping
and Change Study (O’Brien, Wortman, Kessler, &
Joseph, 1993) were used to measure perceived availability
of support and social conflict. To complete the
social support scales, respondents were asked to consider
their experiences during the preceding month.
Scores on each index ranged from 0–1, with higher
scores indicating higher levels of the measured concept.
Published psychometric data on the indices for people
at risk for HIV infection reported alphas of 0.78–0.89
(Berger et al., 2001). Four of the five indices were used
in the current study; coefficient alpha was 0.95 for the
availability index, 0.78 for the validation index, 0.82 for
the subjective social integration index, and 0.84 for the
social conflict index.
Quality of life: The Quality of Life Inventory, a
41-item cancer-specific QOL instrument, was used
(Ferrell, Wisdom, & Wenzl, 1989). This instrument was
previously validated in a population of patients with
lung cancer (Sarna et al., 2002). Participants responded
to questions based on their experience of how cancer
affected their QOL. Individual items were rated on a
Likert-type scale (ranging from 0–10) comprised of four
subscales (physical, social, psychological, and spiritual)
with a coefficient alpha of 0.94.
Results
Sample
The convenience sample in this study consisted of
186 patients with lung cancer (all types and stages) who
were aged 20 years or older (see Table 1). The average
age was 55 years (SD = 13.7, range = 20–88), 70% were
female, and 79% reported that they either smoke or
have smoked in the past. No significant correlations
were noted for demographics and study variables. To
test for adequacy of sample size, the authors examined
the correlation matrix using the Kaiser-Meyer-Olkin
Table 1. Characteristics by Smoking Status
Smokers
(N = 151)
Nonsmokers
(N = 39)
Variable n % n %
Age (years)
20–34 10 7 8 21
35–44 19 13 4 10
45–54 38 25 5 15
55–64 38 25 9 23
65 or older 42 28 13 32
Missing data 4 3 – –
Education
High school or less 26 17 6 15
Some college 52 35 6 15
Four-year college or higher 73 48 26 67
Missing data – – 1 3
Gender
Male 42 28 13 33
Female 109 72 26 67
Race or ethnicity
Asian or Pacific Islander 12 8 4 10
White, non-Hispanic 130 86 32 82
Hispanic 3 2 – –
Other 5 3 1 3
Missing data 1 1 2 5
Income ($)
Less than 30,000 41 27 10 26
31,000–70,000 64 42 14 36
More than 70,000 42 28 15 38
Missing data 4 3 – –
Work status
Employed 65 43 15 38
Unemployed 84 56 23 59
Missing data 2 1 1 3
Marital status
Married 108 72 31 79
Nonmarried 42 28 8 21
Missing data 1 1 – –
Note. Because of rounding, not all percentages add up to 100.
E50 Vol. 38, No. 1, January 2011 • Oncology Nursing Forum
Measure of Sampling Adequacy (MSA) (Kaiser, 1981)
and the Bartlett Sphericity Test (Dziuban & Shirkey,
1974) and found that both supported factorability. The
Kaiser-Meyer-Olkin MSA is a measure of the size of
partial correlations among variables and is a good indicator
of factorability when the MSA is greater than 0.7.
The MSA in this study was 0.96 (p < 001). The Bartlett
Sphericity Test assesses the degree to which a correlation
matrix is an identity matrix, which would make
factoring inappropriate. Because the Bartlett Sphericity
Test in this study was statistically significant (p < 0.001),
the authors were able to conclude that the correlation
matrix is not an identity matrix, suggesting that factor
analysis is appropriate.
Construct Validity: Factor Analysis
of the Cataldo Lung Cancer Stigma Scale
All stigma items were completed in 186 of the 200
questionnaires returned. To evaluate construct validity, an
exploratory factor analysis was performed to determine
Table 2. Factor Loadings of the Stigma Items
Factor
Statement 1 2 3 4
1. I feel guilty because I have lung cancer.a 0.814 – – –
2. I work hard to keep my lung cancer a secret.a
3. Having lung cancer makes me feel like I’m a bad person.a
4. I’m very careful whom I tell I have lung cancer.a
5. I feel I’m not as good as others because I have lung cancer.a
6. I worry people who know I have lung cancer will tell others.
7. Having lung cancer makes me feel unclean.a
8. In many areas of my life, no one knows I have lung cancer.
9. I feel set apart, isolated from the rest of the world.a
10. I told people close to me to keep my lung cancer a secret.
11. Telling someone I have lung cancer is risky.
12. People’s attitudes make me feel worse about myself.
13. As a rule, telling others has been a mistake.
14. My lung cancer diagnosis was delayed because I put off going to the doctor.a
15. I regret having told some people that I have lung cancer.
16. Having lung cancer in my body is disgusting to me.
17. Some told me lung cancer is what I deserved for smoking.a
18. My lung cancer diagnosis was delayed because my healthcare provider did not take my
“smoker’s cough” seriously.a
0.761 0.407 – –
0.678 0.382 0.343 –
0.666 0.387 – –
0.655 0.378 – –
0.645 0.461 – –
0.636 0.42 0.433 –
0.616 0.351 – –
0.613 0.449 0.418 –
0.608 0.489 – –
0.604 0.307 0.398 –
0.594 – 0.316 –
0.588 0.57 – –
0.56 0.304 – –
0.551 0.539 0.344 –
0.513 – 0.407 –
0.488 0.436 – –
0.475 0.4 – –
19. Smokers could be refused treatment for lung cancer.a
20. I have lost friends by telling them I have lung cancer.a
21. I stopped socializing with some because of their reactions.a
22. People have physically backed away from me.a
23. People I care about stopped calling after learning that I have lung cancer.a
24. People seem afraid of me because I have lung cancer.a
25. People who know tend to ignore my good points.
26. People avoid touching me if they know I have lung cancer.a
0.41 – – –
0.341 0.807 – –
0.328 0.767 – –
0.359 0.747 – –
0.394 0.737 – –
0.362 0.709 0.312 –
0.441 0.698 – –
0.486 0.677 – –
27. Some people don’t want me around their children once they know.
28. People avoid you because lung cancer is associated with death.a
29. Some people who know have grown more distant.a
30. Knowing, they look for flaws in your character.
31. I was hurt how people reacted to learning I have lung cancer.a
32. I worry about people discriminating against me.a
33. People with lung cancer are treated like outcasts.a
34. Most people believe a person with lung cancer is dirty.a
35. Most people think a person with lung cancer is disgusting.
0.466 0.675 – –
– 0.62 0.339 0.35
0.393 0.615 0.346 –
0.355 0.58 0.328 –
0.368 0.509 0.402 –
0.452 0.484 0.427 –
– – 0.701 0.379
0.354 0.326 0.59 –
0.341 0.436 0.565 –
36. Most are uncomfortable around someone with lung cancer.a
37. I worry that people may judge me when they learn I have lung cancer.a
38. People with lung cancer lose jobs when employers learn.a
39. Lung cancer is viewed as a self-inflicted disease.a
40. Others assume that a patient’s lung cancer was caused by smoking, even if he or she
never smoked.a
– 0.47 0.498 –
0.448 – 0.45 0.343
0.306 0.415 0.435 –
– – – 0.704
– – – 0.697
41. Others assume that a patient’s lung cancer was caused by smoking, even if he or she had
stopped smoking years ago.a
42. Some people act as though it is my fault that I have lung cancer.a
– – – 0.663
– 0.369 – 0.455
43. Healthcare providers don’t take “smoker’s cough” seriously.a – 0.329 – 0.349
a Items retained for the revised 31-item scale.
Oncology Nursing Forum • Vol. 38, No. 1, January 2011 E51
the underlying structure of
the CLCSS. A common factor
model with alpha factor extraction
was used (Ferketich &
Muller, 1990). Alpha extraction
generates its factors by finding
the item groupings with
maximum internal consistency,
which makes it an appropriate
choice for instrument development
(Gorusch, 1983).
Initially, 46 lung cancer stigma
items were submitted for
factor analysis. The unrotated
first factor loadings were examined
to ensure that all items
loaded on a global stigma factor.
All items loading at least
0.35 on the global factor were retained, as were items loading
at least 0.35 on two or more factors. Two items were
eliminated because they did not meet the retention criteria
and one factor had only one item. This resulted in a CLCSS
with 43 items. The factor loadings for the four retained
and varimax rotated factors are presented in Table 2. The
variance explained by the four-factor solution was 57%.
Factor 1. Stigma and shame subscale: The first factor
consisted of 19 items with loadings ranging from
0.41–0.81. Two items loaded greater than 0.7 on the
first factor. These items were related to the patient’s
personal sense of stigma and shame and addressed the
perceived consequences of other people knowing. Nine
of the other items loading on this factor had moderate
loadings (0.4 or greater), and 11 of the items also had
moderate loadings on at least one other factor.
Factor 2. Social isolation subscale: Thirteen items
loaded on the second factor in the structure matrix with
loadings ranging from 0.48–0.81. Five items loaded greater
than 0.7 on the second factor. This factor was termed
“social isolation subscale,” in keeping with the most
salient items that addressed losing social supports. Four
items had loadings of greater than 0.4 on another factor.
Factor 3. Discrimination subscale: Six items loaded
on the third factor in the structure matrix with loadings
ranging from 0.44–0.7. One item loaded greater than
0.7 on the third factor. The most salient item (0.7) was
the statement, “People with lung cancer are treated like
outcasts.” Other items referred to feeling judged and
discriminated against. Four items had loadings of 0.4
or more on another factor.
Factor 4. Smoking subscale: Four items loaded on
the fourth factor in the structure matrix with loadings
ranging from 0.35–0.7. One item loaded greater than
0.7 on the fourth factor. The most salient item (0.7) was
the statement, “Lung cancer is viewed as a self-inflicted
disease.” The items most correlated with this factor
referred to lung cancer being considered a smokingcaused
disease, even if the patient had never smoked
or stopped smoking years ago.
Development of Subscales and Total Score
Kaiser’s (1981) eigenvalue greater than one criterion
was employed to decide on the number of components
to extract, and a component loading cutoff of 0.35 was
used to decide whether an item loaded on a specific
component (Nunnally & Bernstein, 1994). Items were
inspected for high coefficients or loadings and were then
used in subscale scores. Subscales were formed from
all items loading 0.35 or better on each factor. When
an item loaded at that level on more than one factor, it
was included in each of the corresponding subscales;
five items were included in three of the four subscales
because they loaded well on three factors. Twenty items
were assigned to more than one subscale. Forty-three
items among all 46 items were assigned to at least one
of the four subscales; three items remained unloaded.
This resulted in a factor solution containing 43 items.
Subscale reliability cutoff was set at greater than 0.7
(Nunnally & Bernstein, 1994).
Criterion-Related Validity:
Correlations With Related Measures
Criterion-related validity was assessed by examining
the relationship of the instrument with measures
of related constructs: self-esteem, depression, aspects
of social support, social conflict, and QOL (see Table
3). Construct validity was supported by correlations
being in predicted directions with other instruments.
As expected, self-esteem scores correlated negatively
with the total stigma score and all subscale scores;
self-esteem had the strongest negative correlation with
the smoking subscale score. Similarly, higher levels of
depression were associated with higher levels of overall
stigma, as well as higher levels for each of the subscales.
Table 3. Correlations of Other Measures With the Cataldo Lung Cancer
Stigma Scale Total and Subscales
Subscale
Measure Total LCS
Stigma
and Shame
Social
Isolation Discrimination Smoking
CES-D 0.616* 0.608* 0.574* 0.565* 0.252*
QOL inventory –0.618* –0.603* –0.569* –0.584* –0.325*
RSES –0.723* –0.738* –0.701* –0.608* –0.227*
Social conflict 0.619* 0.606* 0.607* 0.579* 0.237*
SS–Availability –0.547* –0.542* –0.551* –0.434* –0.074
SS–Validation –0.512* –0.479* –0.503* –0.441* –0.217*
Subjective Integration –0.627* –0.604* –0.631* –0.556* –0.251*
* p = 0.01 level (two-tailed)
CES-D—Center for Epidemiological Studies–Depression Scale; LCS—lung cancer stigma; QOL—
quality of life; RSES—Rosenberg Self-Esteem Scale; SS—Social Support indices
E52 Vol. 38, No. 1, January 2011 • Oncology Nursing Forum
Social support availability and validation and subjective
social integration and QOL showed similar patterns:
moderate negative correlations with the total stigma
score and with the stigma and shame, social isolation,
and discrimination subscale scores and slightly weaker
negative correlations with the smoking subscale score.
Social conflict, by contrast, was positively related to the
total stigma score and all subscale scores.
Reliability: Internal Consistency Reliability
Coefficient alpha for the total lung cancer stigma
scale with 43 items was 0.98. Coefficient alphas calculated
for the four subscales provide evidence of internal
consistency reliability (see Table 4). To decrease patient
burden and to further address the issue of adequate
sample size, the CLCSS was shortened to 31 items.
Twelve items that correlated with other items at 0.8 or
greater and appeared to be conceptually redundant
were eliminated. Coefficient alpha was recalculated for
the 31-item stigma scale (0.96), and the four subscales
ranged from 0.75–0.96.
Discussion
In this study, the CLCSS is a reliable and valid instrument
that measures HRS in patients with lung cancer.
The four factors that emerged in this analysis are reflected
in the four subscales: stigma and shame, social
isolation, discrimination, and smoking. These subscales
reflect a conceptual linkage with the phenomenon of
perceived stigma of having lung cancer in the Berger
et al. (2001) model of HRS. The linkages are social disqualification
(social isolation subscale), limited opportunities
(discrimination subscale), and negative change
in identity (stigma and shame and smoking subscales).
As a result of a lung cancer diagnosis, patients often experience
increased psychological distress (Bottorff, Robinson,
Sullivan, & Smith, 2009; Gritz, Dresler, & Sarna,
2005; Henoch, Bergman, Gustafsson, Gaston-Johansson,
& Danielson, 2007; McBride et al., 2003). Previous studies
have shown that prevalence of depression among
patients with lung cancer has ranged from 23%–55%
(Carlsen et al., 2005; Cataldo, Jahan, & Pongquan, 2010;
Montazeri, Milroy, Hole, McEwen, & Gillis, 2001). Stigma
most likely plays an important role in the psychological
distress of patients with lung cancer.
A significant consequence of HRS is a disruption in
QOL (Van Brakel, 2006), and QOL is a strong predictor
of survival in patients with lung cancer (Balduyck,
Hendriks, Lauwers, Nia, & Van Schil, 2009; Qi et al.,
2009). Lung cancer survivors do not experience the same
length or QOL as other cancer survivors (Sugimura &
Yang, 2006). Stigma may be part of the explanation. In
Cataldo, Jahan, and Pongquan (2010), the authors found
that lung cancer stigma explained 11% of the variance
of QOL (p < 0.001), over and above the 69% explained
by depression.
Although this online sample represented 38 states,
it did not reflect the general lung cancer population.
Most participants were Caucasian, women, had higher
levels of completed education, and fell into wealthier
classifications. This may represent a lung cancer population
that has access to the Internet. Also, because of the
nature of online data, clinical information on the sample
(diagnosis, stage of disease, and treatment) was limited.
Future research should include additional psychometric
testing of the CLCSS in a larger, more diverse sample
with clinical data, investigation of the effect of lung
cancer stigma on patient outcomes (i.e., mood, treatment
choice, help-seeking behavior, treatment adherence, disability,
morbidity, and mortality), and development of
an effective stigma intervention.
As treatment for lung cancer becomes more aggressive
and successful, the early detection and intervention
for psychological distress becomes increasingly
more important for patients with lung cancer (Holland
et al., 2010; Lynch, Goodhart, Saunders, & O’Connor,
2010). This article highlights lung cancer stigma as an
important psychosocial issue faced by patients. Because
stigma is associated with poorer health status, higher
levels of depression, and diminished QOL, including
an assessment of stigma in clinical practice is important
(Cataldo et al., 2010). In other diseases, stigma has been
amenable to intervention; the development of the CLCSS
provides the opportunity to identify and measure the
experience of lung cancer stigma and to develop effective
interventions. For people experiencing stigma from
an HIV and AIDS diagnosis, effective interventions
have consisted of three components: education about
the disease, skills building for coping with the stigma,
and counseling and support (Brown, Macintyre, & Trujillo,
2003). The authors of the current study are pilot
testing a lung cancer stigma intervention with these
three components.
Feeling stigmatized causes a fear of rejection, limits
the use of potential social support, and is associated
with depression, poor treatment adherence, poor health,
and shortened survival. Therefore, a sensitive measure
Table 4. Reliability Coefficients for the Cataldo
Lung Cancer Stigma Scale (CLCSS) and Subscales
Subscale
43-Item Scale 31-Item Scale
Coefficient a n Coefficient a
n
Discrimination 0.946 6 0.916 5
Smoking 0.748 5 0.748 5
Social isolation 0.98 13 0.958 10
Stigma and shame 0.974 19 0.968 11
Total CLCSS 0.981 43 0.964 31
Oncology Nursing Forum • Vol. 38, No. 1, January 2011 E53
of lung cancer stigma will allow for the identification of
individuals who feel stigmatized and could benefit from
intervention. The prevention and treatment of stigma
can have a significant impact on the overall health and
QOL of patients with lung cancer.
Janine K. Cataldo, RN, PhD, is an assistant professor in the
Department of Physiological Nursing–Gerontology, Robert
Slaughter, PhD, is the director of the Office of Research and
Information Technology in the School of Nursing, Thierry M.
Jahan, MD, is the Associate Professor of Medicine Bonnie J. and
Anthony Addario Endowed Chair in Thoracic Oncology in the
Helen Diller Family Comprehensive Cancer Center, Voranan L.
Pongquan, RN, MPH, is a master’s student in the School of
Nursing, and Won Ju Hwang, RN, MPH, is a doctoral student
in the School of Nursing, all at the University of California, San
Francisco. This research was supported by a California Tobacco-
Related Disease Research Program Grant (16RT-0149) and a
National Institute of Nursing Research Grant (NR011934-01).
Cataldo can be reached at janine.cataldo@nursing.ucsf.edu,
with copy to editor at ONFEditor@ons.org. (Submitted May
2010. Accepted for publication July 29, 2010.)
Digital Object Identifier: 10.1188/11.ONF.E46-E54
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