Applied Nursing Research 45 (2019) 63–68

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Applied Nursing Research

journal homepage: www.elsevier.com/locate/apnr

Original article

Anticipated stigma and healthcare utilization in COPD and neurological T

disorders☆,☆☆
Elizabeth Danells Chin (PhD, RN, Assistant Professor of Nursing) ,
⁎

Deborah Armstrong (PhD, RN, Adjunct Faculty)

University of Massachusetts Dartmouth, USA

ARTICLE INFO ABSTRACT

Keywords: This descriptive correlational study explored the experience of anticipated stigma and its association with
Anticipated stigma health-seeking behavior in individuals with COPD or a neurological disorder. Participants with COPD (n = 38)
Healthcare utilization or neurological disorders (n = 39) were recruited from specialty practices. The Chronic Illness Anticipated
COPD Stigma Scale (CIASS) and Healthcare Access Measure (HAM) were used to measure stigma and healthcare uti-
Neurological disorders
lization in this population. Socio-demographic and illness-related data were entered into a hierarchical re-
gression analysis to identify variables that contribute to anticipated stigma from three sources. The mean scores
of anticipated stigma by family and friends, coworkers, and healthcare workers were low to moderate at 7.96,
11.68 and 7.94 respectively. Mean score on the HAM was 12.94, indicating moderate delay, in healthcare
utilization. The HAM was correlated with anticipated stigma by family and friends and healthcare provider
subscales (r = .293, p = .010; r = .449 p = .000), indicating a relationship between higher levels of anticipated
stigma in these areas and lower levels of healthcare utilization. Anticipated stigma by coworkers was correlated
with neurological disorders (r = .257, p = .048). In a final model, 20%, 35.4% and 16.8% of the variance of
anticipated stigma from 3 sources can be explained in the final model. Findings from this study describe low to
moderate levels of anticipated stigma from three sources is experienced in individuals with COPD and neuro-
logical disorders and lends new understanding about the association of stigma to healthcare utilization behavior
in this population. Strategies are needed to mitigate the effects of stigma on healthcare utilization.

1. Introduction management and HRQoL (Earnshaw, Quinn, & Park, 2011).

Sixty percent of individuals in the United States (U.S.) have one or 2. Background and significance
more chronic health conditions (Buttorff, Ruder, & Bauman, 2017).
Chronic illness can lead to long-term disability, reduced health related Stigma, as defined by Goffman (1963), is the social devaluation of
quality of life (HRQoL) and death. Chronic obstructive pulmonary an individual based on physical characteristics, disabilities or behaviors
disease (COPD) and Parkinson's disease (PD) are currently the 3rd and incongruent with established social norms. Stigma can be experienced
14th leading cause of death in the U.S. and along with other neurolo- (enacted), or anticipated (internalized) (Weiss et al., 2006). The diag-
gical disorders have a high morbidity rate (American Lung Association, nosis of a chronic illness often becomes the marker for stigmatizing
2013; Frandsen, Kjellberg, Insen, & Jennum, 2014). Effective chronic behavior by self and others (Earnshaw, Quinn, Kalichman, & Park,
disease management can reduce the morbidity impact, however ade- 2013) and can increase the burden of illness (Weiss et al., 2006). Ex-
quate self-management that includes follow up with healthcare services perienced and anticipated stigma associated with chronic illness is often
for disease monitoring and acute illness management is essential (CDC, influenced by whether the illness is believed to be caused by con-
2009). Stigma has been identified in the literature as one reason pa- trollable (high-risk behaviors), or uncontrollable factors (Johnson,
tients delay, or avoid, using healthcare services (Earnshaw & Quinn, Campbell, Bowers, & Nichol, 2007). Tobacco related illnesses are fre-
2011; Weiss, Ramakrishna, & Somma, 2006) resulting in poor disease quently associated with self-blame and experienced stigma by family

☆
None of the authors have any conflict of interest related to this paper.
☆☆
This article does not contain any studies with animal subjects performed by any of the authors.
⁎
Corresponding author at: University of Massachusetts Dartmouth, College of Nursing, 285 Old Westport Road, North Dartmouth, MA, USA.
E-mail address: [email protected] (E.D. Chin).

https://doi.org/10.1016/j.apnr.2018.12.002
Received 19 May 2018; Received in revised form 3 December 2018; Accepted 8 December 2018
0897-1897/ © 2018 Elsevier Inc. All rights reserved.
E.D. Chin, D. Armstrong Applied Nursing Research 45 (2019) 63–68

and healthcare providers (Berger, Kapella, & Larson, 2011; Halding, & Sawin, 2009), a mid-range theory that considers the contextual
Heggdal, & Wahl, 2011). Self-blame increases internalized stigma, and process and outcome factors that influence self-management, informed
when internalized stigma is coupled with experienced (perceived or this study. Specifically, the social facilitation process, which includes
enacted) stigma the risk of anticipated stigma is increased (Earnshaw & the dimensions of social influence, social support and negotiated col-
Quinn, 2011). Whether intentional or unintentional, stigma impacts the laboration (patient, family, healthcare providers) was perceived by the
health and well-being of individuals with chronic illness (Earnshaw & researchers to be most relevant to the association between anticipated
Quinn, 2011; Halding et al., 2011). stigma and healthcare utilization, an important component of self-
The association between stigma and delay, or avoidance, in acces- management.
sing healthcare services is prominent in the HIV and mental health According to the theory, social influence is the advice given to an
disorder literature. Only recently has stigma associated with other individual by a healthcare provider (HCP) that encourages them to
chronic illness been more thoroughly investigated. Earnshaw and engage in specific self-management behaviors, social support includes
Quinn (2011) explored internalized, experienced (enacted) and antici- emotional and informational support provided by the HCP to facilitate
pated stigma associated with chronic illness and noted that participants an individual's engagement in self-management, and negotiated colla-
who internalized stigma (self-blame), or who had experienced stigma boration is the unification of clinician expertise and individual pre-
during healthcare encounters, anticipated stigmatization by healthcare ferences to determine treatment goals, responsibilities and strategies. In
providers more often and were less likely to access healthcare for this study, anticipated stigma by HCPs was expected to reduce health-
routine or urgent health management. Anticipated stigma from family care utilization resulting in reduced opportunities for social influence
and friends, coworkers and healthcare providers also contributes to and social support from healthcare providers. This potentially can ne-
poorer healthcare utilization and reduced HRQoL (Earnshaw et al., gatively impact collaborative illness management.
2011).
A systematic review of stigma-related experiences in individuals 3.2. Design, sample and setting
with respiratory disease identified negative physical, psychosocial,
quality of life, employment, treatment and clinical outcomes (Rose, A cross-sectional descriptive correlational design was used in this
Paul, Boyes, Kelly, & Roach, 2017). Blame from family and others study. A convenience sample of patients with a confirmed diagnosis of
correlated with self-blame. In patients with COPD, anticipated stigma COPD or a neurological disorder, who were able to read and write in
and self-blame were linked to poorer health status and longer delay in English and received follow up care at a pulmonology or neurology
seeking treatment (Rose et al., 2017). In asthma, anticipated stigma was office within a regional healthcare system, was obtained for this study.
reported to be associated with poorer self-efficacy and subsequent self- Based on a literature review of stigma in populations similar to those
management. Illness-related factors were moderately correlated with under investigation in the current study, a medium effect size by con-
stigma (Andrews, Jones, & Mullan, 2013). Anticipated stigma by family vention was expected. To achieve a power of 0.80 with an alpha of 0.05
and friends and coworkers have been reported in individuals with PD and effect size of 0.15, a minimum of 97 participants were required for
(Burgener & Berger, 2008; Hermann, 2013; Maffoni, Giardini, this regression analysis with 6 predictor variables (Cohen, 1992).
Pierobon, Ferrazzoli, & Frazzitta, 2017; Rao et al., 2009) and chronic
migraines (Young, Park, Tian, & Kemper, 2013) and is associated with 3.3. Research instruments
poorer HRQoL. Demographic characteristics, illness related factors and
depression were moderately correlated with stigma in individuals with 3.3.1. Demographic and chronic illness data collection tool
chronic migraines (Young et al., 2013). Demographic data collected included age, gender, race, marital
The impact of stigma contributes to the disease burden of chronic status, level of education and family income. Participants also reported
illness on many levels, but delay in healthcare seeking is of particular the number of years since their diagnosis and the extent to which their
concern for chronic illness management and health outcomes (Quinn & chronic illness affected life enjoyment on a scale of 1 (not at all) to 5 (all
Earnshaw, 2013; Weiss et al., 2006). The literature exploring antici- the time).
pated stigma in individuals with COPD and neurological disorders is
limited. Additionally, the association between anticipated stigma and 3.3.2. The Chronic Illness Anticipated Stigma Scale (CIASS)
healthcare utilization has not been described in this population. The CIASS (Earnshaw et al., 2013) was used to measure anticipated
stigma. This 12-item scale consists of 3 subscales that measure the ex-
3. The study tent individuals anticipate stigma from family and friends, coworkers
and healthcare providers. Each subscale contains 4 items on a 5-point
The purpose of this study was to explore the experience of antici- Likert scale of 1 (very unlikely) to 5 (very likely). Items on each sub-
pated stigma in individuals with COPD and neurological disorders, and scale are averaged to create a score for each area of anticipated stigma.
examine the relationship between anticipated stigma and healthcare Subscale scores range from 1 to 5 with higher scores indicating greater
utilization. It was our goal to better understand the impact anticipated anticipated stigma. Psychometric evaluation of this tool demonstrated
stigma has on healthcare utilization in individuals with COPD and a good internal consistency (α = 92, 0.95, 0.95 for subscales 1–3 re-
subset of neurological disorders in order to develop interventions to spectively) and test-retest reliability (r = 0.82, p < .001) (Earnshaw
reduce stigma-related delays in accessing healthcare services. The re- et al., 2013). In this study Cronbach's alpha was calculated and subscale
search questions were: (a) What are the levels of anticipated stigma by reliabilities were 0.851, 0.922 and 0.900 respectively. Permission for
friends and family, coworkers, and healthcare workers experienced by use of this scale was obtained from the instrument developer.
individuals living with COPD or a neurological disorder? (b) What is the
relationship between anticipated stigma and healthcare utilization in 3.3.3. The Healthcare Access Measure (HAM)
individuals with COPD or a neurological disorder? (c) What are the The HAM (Earnshaw & Quinn, 2011) is a 6 item Likert scale that
predictors of anticipated stigma by friends and family, coworkers, and measures healthcare utilization behavior on a 4-point scale from
healthcare workers in individuals with COPD or a neurological dis- “strongly disagree” (1) to “strongly agree” (4), indicating whether
order? participants should have accessed healthcare services earlier in a
variety of clinical situations. Averaging the 6 item responses provides a
3.1. Theoretical framework total HAM score ranging from 1 to 4. Higher scores indicate poorer
healthcare utilization. In this study Cronbach's alpha was 0.730. Per-
The Individual and Family Self-Management Theory [IFSMT] (Ryan mission for use of this measure was obtained from the instrument

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E.D. Chin, D. Armstrong Applied Nursing Research 45 (2019) 63–68

developer. Table 1
Demographic, clinical characteristics and mean score of CIASS and HAM
3.3.4. Mental Health Index (MHI-5) of the 36-item SF health survey (SF- (N = 77).
36) Characteristic M ± SD (range)
The MHI-5 (Ware & Sherbourne, 1992) was used to screen for de-
pression. This abbreviated instrument has a reported Cronbach's alpha Age (years) 61.1 ± 16.3 (20–91)
Years with diagnosis 10.7 ± 9.37 (1–39)
of 0.74. Scores < 52 (0−100) are suggestive of the presence of sig-
nificant depressive symptoms (Berwick, Kapella, & Larson, 1991).
Characteristic n%
3.4. Data collection procedures
Gender
Male 24 (31.2%)
After receiving Institutional Review Board (IRB) approval partici-
Female 53 (68.8%)
pants were recruited from the specialty practice offices. Participants
Marital status
were informed of the study through flyers displayed in the office
Single 14 (18.2%)
waiting areas. Interested participants were directed to request a study Married 42 (54.5%)
packet from the office staff. Each packet contained a study information Widowed 12 (15.6%)
sheet, a consent form, data collection tools and a stamped, pre-ad- Divorced 9 (11.7%)
dressed envelope for return of documents to the PI at the university. Education
Participants were directed to read the study information sheet and Less than high school 10 (13.0%)
consent form enclosed in the packet. To maintain anonymity, the par- High school 16 (20.8%)
Some college 21 (27.3%)
ticipant retained the consent form. Return of the data collection tools
Associate degree 5 (6.5%)
implied consent for participation. An additional form and envelope Bachelor degree 14 (18.4%)
were supplied for provision of a contact number if the participant Graduate degree 11 (14.5%)
wished to be entered into a raffle for a Kindle Reader. Income
< 15,000 12 (15.5%)
3.5. Data analysis 15,000–35,000 18 (23.4%)
36,000–55,000 17 (22.1%)
56,000–75,000 13 (16.9%)
Data were entered into SSPS software. Demographic data were
> 75,000 17 (22.1%)
analyzed using descriptive statistics to categorize the sample popula-
Diagnosis
tion. Pearson correlation analysis was conducted to explore associations
COPD 38 (49.4%)
between stigma and healthcare utilization behavior. Hierarchical re- Neurological disorder 39 (50.6%)
gression was used to analyze the relationships among demographic and Migraine 8
clinical variables on anticipated stigma in each area explored in the Parkinson 12
CIASS. Other 19

4. Results Scale scores M ± SD (range)

CIASS subscale 1 2.0 ± 0.98 (1–4.75)

4.1. Participant characteristics
CIASS subscale 2 2.6 ± 1.14 (1–5)
(workers only n-60)
A total of 77 participants completed and returned study packets. CIASS subscale 3 2.2 ± 0.96 (0.75–4.5)
Although the study was powered for 97 participants, all efforts to re- HAM 2.2 ± 0.57 (1–3.5)
cruit additional participants were exhausted. All pulmonology and
neurology practices in the healthcare system that agreed to allow re- friends and family (subscale 1) and healthcare providers (subscale 3)
cruitment of participants for the study in their office were reminded to was significantly correlated with poorer healthcare utilization beha-
have study flyers visible and study packets available. Offices were vior. Anticipated stigma from coworkers (subscale 2) was significantly
visited once monthly. After a 3 months period with no further study correlated with medical history (r = 0.257, p .048), years with diag-
packets returned, data collection was halted. nosis (r = −0.273, p .038) and greater impact of illness on enjoyment
Demographic and clinical characteristics are presented in Table 1. of life (r = 0.326, p .011). The correlations between subscales of the
Thirty-eight participants (49.4%) reported a diagnosis of COPD and 39 CIASS, HAM, demographic and clinical variables are displayed in
(50.6%) participants reported a neurologic diagnosis. The sample was Table 2.
predominantly white (n = 73, 95%), married (n = 42, 54.5%) females
(n = 53, 68.8%) with a mean age of 61.1 (range 20–91, SD = 16.33).
4.4. Multivariate regression analysis of anticipated stigma
4.2. Anticipated stigma and health care access
The hierarchical regression results are displayed in Table 3. Two
Table 1 shows the participants' mean scores for the study variables models are presented for each CIASS subscale (1, 2, 3) outcome vari-
of anticipated stigma and healthcare access. The results indicate that able. In the first step of each model patient-related factors were entered
study participants experienced a greater amount of anticipated stigma to determine the influence of gender, age and marital status on an-
from coworkers (M = 2.6, SD = 1.14) than by friends and family ticipated stigma. These variables accounted for 18% of the variance in
(M = 2.0, SD = 0.98) or healthcare providers (M = 2.2, SD 0.96). anticipated stigma from friends and family, 15% of the variance in
Participants also reported reduced healthcare utilization on the HAM anticipated stigma from co-workers and 15.9% of the variance in an-
(M = 2.2, SD = 0.57). ticipated stigma from healthcare providers. However, only gender
contributed significantly to the variance in anticipated stigma by
4.3. Bivariate analysis of correlations among study variables friends and family (subscale 1) and coworkers (subscale 2), and only
age contributed significantly to the variance in anticipated stigma by
Correlation coefficients indicate that anticipated stigma from healthcare providers (subscale 3). In step 2 of each model, illness-

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E.D. Chin, D. Armstrong Applied Nursing Research 45 (2019) 63–68

Table 2
Bivariate Pearson correlation matrix.
Age Gender Marital status Medical history Years with diagnosis Subscale 1 Subscale 2 Subscale 3 HAM MHI
n = 60

Age 1⁎⁎⁎
Gender −0.076 1
0.523
Marital status .428⁎⁎ 0.171 1
0.000 0.139
Medical history −.437⁎⁎ −0.047 −0.196 1
0.000 0.683 0.089
Years with diagnosis 0.086 0.099 0.195 0.102 1
0.481 0.403 0.098 0.389
Subscale 1 −276⁎ .249⁎ 0.002 0.105 −0.014 1
0.018 0.029 0.986 0.363 0.906
Subscale 2 −315⁎ .230⁎ −0.122 .257⁎ −.273⁎ .459⁎⁎ 1
0.015 0.045 0.357 0.048 0.038 0.000
Subscale 3 −335⁎⁎ 0.136 −0.085 .0.185 0.092 .527⁎⁎ .440⁎⁎ 1
0.004 0.238 0.464 0.108 0.435 0.000 0.000
HAM −0.241 0.285 −0.117 .283⁎ 0.112 .293⁎ 0.127 .449⁎⁎ 1
0.071 0.013 0.318 0.013 0.346 0.010 0.338 0.000
MHI-5 .328⁎⁎ −0.008 .243⁎ −0.040 0.130 −.297⁎⁎ −.343⁎⁎ −0.188 −0.178 1
0.005 0.943 0.034 0.729 0.269 0.009 0.007 0.101 0.123

⁎
p < .05.
⁎⁎
p < .01.
⁎⁎⁎
p < .001.

related factors were entered to determine the influence of illness di- anticipated stigma and healthcare utilization was also explored.
agnosis, length of time since diagnosis and MHI-5 score on anticipated Participants reported low levels of stigma from family and friends and
stigma. Medical history and years since diagnosis were significant healthcare workers with only 20–36% reporting that stigma was
predictors of variance in anticipated stigma by coworkers (subscale 2). somewhat likely, likely, or very likely to occur on the CIASS subscales.
There were no significant illness-related predictors of variance in an- This is consistent with findings by Rao et al. (2009) and Hermann
ticipated stigma by friends and family (subscale 1) or healthcare pro- (2013) in which 10% and 40% of participants with PD reported being
viders (subscale 2). The final models indicated that 20%, 35.4% and stigmatized by family and friends. Qualitative studies by Berger et al.
16.8% of the total variance in anticipated stigma by friends and family, (2011) and Halding, Heggdal, and Wahl (2011) uncovered participant
coworkers and healthcare providers respectively, is explained by per- experiences of stigmatization by family, friends and healthcare workers
sonal-related and illness-related factors. in participant's with COPD, however the number of reports were not
quantified. Anticipated stigma by coworkers was captured on CIASS
subscale 2 with 45–70% of participants reporting that stigma was
5. Discussion somewhat likely, likely, or very likely to be experienced. This is con-
sistent with findings from other studies in which participants with
This study investigated the experience of anticipated stigma in in- chronic migraines anticipated stigma by colleagues due to missed work
dividuals with COPD and a subset of neurological disorders that include time (Young et al., 2013) and by participant's with PD due to inability
PD (30.8%) and chronic migraines (20.5%). The relationship between

Table 3
Hierarchical regression analysis predicting relationship of patient-related and illness-related variables on CIASS subscales.
CIASS subscale 1 CIASS subscale 2 CIASS subscale 3

Friends and family Coworkers Healthcare workers

n = 77 n = 60 n = 77

B SE B β B SE B β B SE B β

Step 1
Patient-related factors
Age (years) −0.054 0.033 −0.232 −0.013 0.043 −0.047 −0.072 0.032 −.325⁎
Gender 2.508 0.975 .302⁎ 3.79 1.33 .351⁎ 1.62 0.944 0.205
Marital status 0.394 0.418 0.122 −0.024 0.553 −0.006 0.114 0.405 0.037
R2 .180⁎⁎ .150⁎ .159⁎
R2 change

Step 2
Illness-related factors
Medical history 0.063 0.966 0.008 3.31 1.29 .352⁎⁎ 0.100 0.935 0,014
Years since diagnosis −0.012 0.046 −0.030 −0.167 0.057 −.355⁎⁎ 0.035 0.045 0.094
MHI-5 score −0.006 0.005 −0.146 −0.039 0.029 −0.164 −0.004 0.023 −0.021
R2 0.200 .354⁎⁎ 0.168
R2 change 0.020 0.204 0.009

⁎
p < .05.
⁎⁎
p < .01.

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E.D. Chin, D. Armstrong Applied Nursing Research 45 (2019) 63–68

to perform work duties because of symptoms (Maffoni et al., 2017). The with medical records. Although confidentiality and anonymity were
literature also reports that individuals with COPD anticipate stigma by ensured and data was returned directly to the researcher at the uni-
coworkers because of their frequent illness-related absenteeism and versity, the packets were distributed in physician offices and partici-
also out of fear of the impact of their illness on insurance rates (Berger pants may not have been honest regarding their experience of stigma
et al., 2011). A higher level of depression was also correlated with from healthcare workers. This may also have impacted participation
higher levels of anticipated stigma by coworkers, however the nature of resulting in the researcher's inability to obtain the powered sample. On
this relationship is not known. the contrary, this population also may have had a satisfactory re-
Healthcare utilization was moderately reduced with 30–63% of in- lationship with their healthcare providers, which may not be typical of
dividuals reporting avoiding, or delaying, necessary healthcare ser- the larger population of patients receiving these specialty services. The
vices. HAM scores were significantly correlated with medical history older, educated, white, female characteristics of participant's further
(neurological disorders) (p = .013). Anticipated stigma by friends and limit generalizability.
family and healthcare workers were also correlated with poorer routine
and urgent healthcare utilization (< 0.01, < 0.001). This has been re- 6. Conclusions
ported in the literature to be associated with internalized (self-blame)
and enacted stigma leading to anticipated stigma and subsequent The findings of this study describe the experience of anticipated
avoidance of healthcare encounters (Berger et al., 2011; Chin, 2017; stigma in individuals with COPD and neurological disorders by family
Earnshaw & Quinn, 2011; Halding et al., 2010). and friends, coworkers and healthcare workers. It also lends new un-
According to the IFSMT (Ryan & Sawin, 2009) individuals are more derstanding about the relationship of stigma to healthcare utilization
likely to engage in recommended health behaviors, including health- behavior in individuals with COPD and a subset of neurological dis-
care follow-up for routine and urgent care, if they experience social orders. Anticipated stigma from family and friends and healthcare
facilitation during their healthcare encounters. Social facilitation in- workers was associated with poorer routine and emergent healthcare
cludes receiving advice and support as well as engaging in negotiated utilization, and potentially can contribute to morbidity in this popula-
collaboration to facilitate illness self-management. On the anticipated tion. Having a neurological disorder was associated with higher levels
stigma by healthcare providers subscale of the CIASS, 28.6% of parti- of anticipated stigma by coworkers. Strategies need to be developed to
cipants thought that a healthcare provider would blame them for not mitigate the effects of anticipated stigma on employment enjoyment,
getting better, 20.8% thought a healthcare provider would think they healthcare seeking behavior and overall HRQoL.
were a bad patient and 36.4% thought a healthcare provider would be
frustrated with them. Anticipated stigma by healthcare providers ne- Acknowledgements
gatively impacts healthcare utilization (as indicated by HAM results)
and disengages individuals from the social facilitation process, poten- We wish to thank Dr. Kristen Sethares for her support with statis-
tially resulting in poor health outcomes. tical analysis for this study.
Regression analysis demonstrated that patient related-factors con-
tributed most of the variance in anticipated stigma by family and Financial support
friends (gender) and by health care providers (age), however illness-
related factors (medical history, years since diagnosis) contributed a Financial support for this study was provided by the University of
greater amount to the variance in anticipated stigma by co-workers. Massachusetts Dartmouth Summer Research Fellowship Program.
The literature supports that individuals with chronic migraines and
COPD experience frequent absenteeism because of their illness, and References
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