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Journal of Pediatric Psychology logoLink to Journal of Pediatric Psychology
. 2020 May 15;45(5):509–520. doi: 10.1093/jpepsy/jsaa030

Validation of the Health-Related Felt Stigma and Concealment Questionnaire

Kelsey T Laird j1,j2,✉, Craig A Smith j2, Steven D Hollon j3, Lynn S Walker j2,j4
PMCID: PMC7234182  PMID: 32388554

Abstract

Objective

Stigma is associated with many health conditions, including chronic pain. Research on health-related stigma is limited by the lack of validated instruments that distinguish among various stigma-related constructs. We aimed to develop and validate such a measure for pediatric functional abdominal pain (FAP). Felt stigma (FS) was defined as comprising both perceived and internalized stigma. Stigma concealment (SC) was defined as efforts by stigmatized individuals to prevent others from learning of their condition.

Methods

Using a theory-driven approach, we adapted items from existing self-report measures of stigma to construct the health-related FS and Concealment Questionnaire (FSC-Q). Patients with FAP (N = 179, ages 11–17) completed the preliminary FSC-Q and health-related measures hypothesized to be associated with stigma. Cognitive interviewing and exploratory factor analysis (EFA) informed the final version of the measure.

Results

EFA identified a 2-factor model comprised of FS and SC. The FS and SC scales exhibited good internal consistency and construct validity. Consistent with study hypotheses, both factors were significantly associated with anxiety, depression, pain catastrophizing, pain threat, physical symptoms, and pain interference/disability. Higher FS was associated with higher mental healthcare utilization. The subset of participants meeting criteria for irritable bowel syndrome (IBS) reported higher FS and SC compared with those without IBS.

Conclusion

The FSC-Q may help advance research on health-related stigma in FAP and other chronic health conditions by allowing for assessment of distinct stigma-related constructs.

Keywords: disclosure, functional gastrointestinal disorder, measure validation, medically unexplained syndrome, psychometric, validated measure

Introduction

Goffman (1963, p. 5) defined stigma as an “undesired differentness” that deprives individuals of full social acceptance. Stigma is a feature of many chronic health conditions, often exacerbating the negative impact of physical symptoms on emotional well-being (Weiss, Ramakrishna, & Somma, 2006). Stigma is particularly prevalent in conditions that persist despite standard medical treatment and may be perceived as having a psychological or “controllable” origin, such as chronic pain and functional gastrointestinal disorders (FGIDs; Åsbring & Närvänen, 2002; Charmaz, 1983; Crandall & Moriarty, 1995; Looper & Kirmayer, 2004). Because the development of self-identity and peer relationships is especially salient during adolescence, stigma encountered at this life stage may have even greater influence on psychosocial adjustment and functioning than stigma encountered earlier or later in life (Austin, MacLeod, Dunn, Shen, & Perkins, 2004; Bakula et al., 2019).

Pediatric functional abdominal pain (FAP) is defined here as episodic or continuous abdominal pain persisting for at least 2 months without identifiable organic etiology. The prevalence of pediatric FAP is estimated as 14%, making it one of the most common potentially stigmatizing pediatric health conditions (Korterink, Diederen, Benninga, & Tabbers, 2015). Many youth with FAP meet criteria for a FGID—most commonly irritable bowel syndrome (IBS; Korterink et al., 2015). IBS is characterized by both abdominal pain and altered bowel habits (Baber, Anderson, Puzanovova, & Walker, 2008; Walker et al., 2004); the latter symptoms may elicit disgust due to societal taboos (Taft, Bedell, Naftaly, & Keefer, 2017). Although the degree of stigma in pediatric FAP is unknown, research on related populations—including adolescents with mixed chronic pain (Wakefield, Zempsky, Puhl, & Litt, 2018) and adults with IBS (Taft, Keefer, Artz, Bratten, & Jones, 2011)—indicates that stigma is prevalent and consequential. For example, 45% of participants in a study of adults with IBS reported that others believed their IBS was self-inflicted and 63% reported limited disclosure of their condition to others (Jones et al., 2009). Another study of patients with IBS found that anticipation of stigma was associated with increased anxiety, increased somatization, and decreased self-esteem (Taft et al., 2011). Adolescents with chronic pain (Wakefield et al., 2018) as well as parents of children with FAP (Bufler, Gross, & Uhlig, 2011) often report that others believe the pain is “all in their head”. However, the extent to which youth with FAP view their condition as stigmatizing—and whether such perceptions are associated with health outcomes—is currently unknown.

Research has addressed two major domains of stigma—enacted stigma and felt stigma (FS; Gray, 2002; Scambler, 1998). Enacted stigma (also referred to as “environmental” or “experienced” stigma) is “directly experienced social discrimination” (Luoma et al., 2007, p. 1332) resulting from negative biases of individuals in society toward a stigmatized group. Enacted stigma is best measured using observational methods and was not assessed in the current study. FS refers to “the shame and expectation of discrimination that prevents people [with a potentially stigmatizing characteristic] from talking about their experiences and stops them seeking help” (Gray, 2002).

The construct of FS can be further divided into two categories (Brohan, Slade, Clement, & Thornicroft, 2010). First, perceived stigma refers to individuals’ perception of other’s stigmatizing attitudes and behavior toward them as well as their anticipation of others’ potential stigmatizing attitudes and behavior toward them, if others were to learn of their concealed stigmatized identity (Brohan et al., 2010; Chaudoir & Quinn, 2010). Second, internalized stigma (also referred to as “self-stigma”) refers to the extent to which a stigmatized individual incorporates society’s negative evaluation into his/her value system and sense of self (Corrigan & Watson, 2002; Link, Struening, Neese-Todd, Asmussen, & Phelan, 2002; Livingston & Boyd, 2010). Internalized stigma has been referred to as the “psychological point of impact” by which stigma affects health (Ritsher & Phelan, 2004).

Another construct that has often been conflated with FS is stigma concealment (SC), which we define here as efforts by individuals with a concealable stigma to prevent others from learning of their condition. SC can be contrasted with stigma disclosure that is, the act of revealing one’s stigmatized status. Efforts to conceal a health condition may cause individuals to withdraw from activities, thereby compounding the negative impact of the illness on functioning and well-being.

The literature currently lacks measures that clearly distinguish among these stigma-related constructs. For example, measures of “internalized” stigma often include items more consistent with perceived stigma (e.g., “People discriminate against me because I have a mental illness”; Ritsher, Otilingam, & Grajales, 2003) or with concealment behavior (e.g., “I am very careful about who I tell about having depression”; Kanter, Rusch, & Brondino, 2008). Research on adolescents with epilepsy (Westbrook, Bauman, & Shinnar, 1992) and sickle cell disease (Martin et al., 2018) suggests that is it particularly important to distinguish perceived stigma from SC as these youth may deny that they perceive stigma from others while simultaneously reporting that they conceal their condition from others.

This article describes the development and validation of a measure designed to assess three constructs related to health-related stigma in youth with FAP: perceived stigma, internalized stigma, and SC. Exploratory, rather than confirmatory, factor analysis was employed to determine whether items hypothesized to represent these three constructs would emerge as distinct (DeVellis, 1991). Construct validity of the measure was examined by testing for associations with constructs previously shown to correlate with health-related FS. Studies of adolescents with inflammatory bowel disease (Gamwell et al., 2018) and adolescents with epilepsy (Adewuya & Ola, 2005; Austin et al., 2004) have documented significant associations between FS and mental health symptoms (e.g., depression and anxiety). In adults with chronic pain, FS has been associated with greater pain catastrophizing, even after controlling for depressive symptom severity (Waugh, Byrne, & Nicholas, 2014). Increased health-related FS also has been associated with greater severity of physical symptoms (Chaudoir Earnshaw, & Andel, 2013; Murphy, Austin, & Greenwell, 2007; Quinn & Chaudoir, 2009; Taft, Riehl, Dowjotas, & Keefer, 2014; Wolitski, Pals, Kidder, Courtenay-Quirk, & Holtgrave, 2009) and greater illness interference/disability (Taft et al., 2014; Waugh et al., 2014). As such, we expected moderate positive correlations between all three stigma-related constructs and (a) mental health symptoms (anxiety and depression); (b) pain cognitions (pain catastrophizing and pain threat appraisal); (c) physical symptoms (abdominal pain, gastrointestinal (GI) symptoms, and other somatic symptoms); and (d) functional impairment (functional disability and pain interference). We hypothesized that youth who, in addition to abdominal pain, had symptoms associated with IBS (diarrhea, urgency, and flatulence) would endorse greater stigma compared with those without IBS symptoms. As both positive (Taft et al., 2014) and negative (Alegria Drury & Louis, 2002; Kim, Britt, Klocko, Riviere, & Adler, 2011) associations have been observed between stigma and healthcare utilization, this association was investigated as an exploratory question. Finally, we sought to conduct a descriptive analysis of stigma in youth with FAP.

Materials and Methods

Measure Development

Item Generation

The first author identified self-report questionnaire measures of stigma cited in three reviews of stigma measures (Brohan et al., 2010; Link, Yang, Phelan, & Collins, 2004; Stevelink, Wu, Voorend, & van Brakel, 2012) and reviewed individual items for relevance to FAP. Additional items were constructed based on qualitative studies (Austin et al., 2004; Tong, Jones, Craig, & Singh‐Grewal, 2012; Drossman et al., 2009; Tong et al., 2012) and the authors’ clinical experience with FAP, resulting in an initial pool of 63 items. Wording of adult items was simplified to be appropriate for youth.

Expert Evaluation

Five content experts (professionals from medical, mental health, and public health backgrounds with expertise in stigma or pediatric FAP) evaluated questionnaire instructions, response choices, item readability, and relevance of items to the construct of stigma as applied to FAP. Reviewers were provided with definitions of the three stigma-related constructs (perceived stigma, internalized stigma, and SC) and were instructed to classify each item according to the construct it represented. In total, 26 of the 63 items were sorted into the same construct category by all reviewers and were retained for cognitive interviewing.

Cognitive Interviewing

Cognitive interviewing was conducted with four adolescents with FAP ages 13–18 (two males and two females) using “Think-aloud” and “Verbal Probing” techniques (Willis, 2004). The method of individual interviews was chosen over focus groups to facilitate participant scheduling and eliminate the potential for discussions to be dominated by more vocal group members. Participant responses resulted in the addition of one item, rewording of one item, and elimination of four items regarded as redundant. Five items with low average level of endorsement (≤1.5 on a 1–5 scale) were also eliminated. Readability of the resulting 18 items was 5.1 (fifth grade) on the Flesch–Kincaid readability test (Kincaid, Fishburne, Rogers, & Chissom, 1975) and was considered acceptable.

Measure Validation

Participants

The sample comprised 179 adolescents (ages 11–17) with FAP who presented to a pediatric gastroenterology clinic for evaluation of abdominal pain. Eligibility criteria were: abdominal pain ≥2 months’ duration; 11–17 years of age; no significant chronic illness (e.g., diabetes); no hospitalization in the past 6 months; sixth grade reading level. Organic disease diagnosis associated with abdominal pain (e.g., inflammatory bowel disease) was also an exclusion criterion. Parents (N = 179) also participated.

Procedure

Recruitment, screening, and data collection took place during the patient’s initial evaluation at the Pediatric Gastroenterology Clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt University Medical Center. Informed consent (parents) and assent (adolescents) were obtained and questionnaires were completed online using REDCap (Harris et al., 2009). The Vanderbilt IRB approved all study procedures. Data were collected between October 2015 and February 2018.

Measures

Health-Related Stigma

The preliminary measure comprised 18 items rated on a scale ranging from “Strongly Disagree” (1) to “Strongly Agree” (5). Items are averaged to create total scores for each of two scales (see Supplementary Appendix A for the final 14-item version of the measure and scoring instructions). In order to determine the percentage of the sample who endorsed high levels of stigma related to their FAP, we adopted the practice (Ritsher & Phelan, 2004; Waugh et al., 2014) of identifying individuals whose mean response to scale items ranged from “agree” to “strongly agree”.

Mental Health

Symptoms of anxiety and depression were assessed via the Pediatric PROMIS Anxiety and Depression 8-item short forms (Pilkonis et al., 2011; Varni et al., 2014). These scales have been shown to have good psychometric properties (Varni et al., 2014).

Pain Cognitions: Pain Catastrophizing

Pain catastrophizing was assessed via the 13-item Pain Catastrophizing Scale (PCS; Sullivan, Bishop, & Pivik, 1995). The PCS asks respondents to indicate the degree to which they experience various thoughts or feelings when experiencing pain. The PCS has been shown to have good internal consistency (Sullivan et al., 1995).

Pain Cognitions: Pain Threat

Adolescents’ pain appraisals (Lazarus & Folkman, 1984; Smith & Lazarus, 1990) were assessed via the Primary Appraisal (i.e., pain threat) subscale of the Pain Beliefs Questionnaire (PBQ; Walker, Smith, Garber, & Claar, 2005). This 20-item subscale assesses the degree to which pain is perceived as threatening to one’s well-being. Reliability of the PBQ and sensitivity to treatment has been documented (Anderson, Acra, Bruehl, & Walker, 2008; Langer et al., 2007; Levy et al., 2010; Lipsitz et al., 2010; Walker et al., 2005).

Physical Symptoms

Abdominal pain was assessed via the Abdominal Pain Index (API; Laird, Sherman, Smith, & Walker, 2015). Good concurrent, discriminant, and construct validity, as well as good internal consistency, has been demonstrated for the API among youth with FAP (Laird et al., 2015). The Children’s Somatic Symptom Inventory (CSSI; L. S. Walker & Garber, 2018; formerly labeled the Children’s Somatization Inventory [CSI-24]; Walker, Beck, Garber, & Lambert, 2009) was administered to assess the severity of 24 somatic symptoms. The CSSI has shown good psychometric properties in clinical and community samples (Lavigne, Saps, & Bryant, 2012; Walker et al., 2009). Subscale scores were computed for GI symptoms (eight items; e.g., abdominal pain, nausea, constipation, diarrhea, bloating) and non-GI symptoms (16 items; e.g., dizziness, back pain, headaches, sore muscles). The Rome III Questionnaire (Drossman, 2006) was administered to determine whether adolescents met symptom diagnostic criteria for FGIDs including IBS.

Functional Impairment

The 10-item short form of the Functional Disability Inventory (FDI; Walker & Greene, 1991) was used to assess difficulty in physical and psychosocial functioning due to physical health. The FDI has high internal consistency and reliability in adolescents with FAP (Claar & Walker, 2006). The effect of pain on participants’ lives was further assessed via the 13-item Pediatric PROMIS Pain Interference Scale (Amtmann et al., 2010), a measure with good psychometric properties (Varni et al., 2014).

Healthcare Utilization

Parents reported on their child’s medical and mental health appointments in the three months preceding the clinic visit. Responses were on the following ordinal scale: 0, 1, 2, 3, 4, 5, and ≥6.

Alpha reliability coefficients for all measures are provided in Table III.

Table III.

Descriptive Statistics, Reliability Coefficients and Observed Pearson Correlations Among All Variables

M SD 1 2 3 4 5 6 7 8 9 10 11 12 13
1. Felt stigma 2.23 .95 (.91)
2. Stigma concealment 3.00 .98 .64a (.85)
3. Anxiety (PROMIS) 18.98 8.23 .52a .28a (.94)
4. Depression (PROMIS) 15.21 7.91 .49a .25a .70a (.96)
5. Pain catastrophizing (PCS) 22.68 12.54 .40a .18b .65a .51a (.94)
6. Pain threat (PBQ) 1.75 .90 .34a .27a .43a .41a .69a (.80)
7. Abdominal pain (API) 2.23 .88 .19b .16b .19b .19b .38a .59a (.78)
8. GI symptoms (CSSI) 1.47 .72 .30a .19a .29a .34a .39a .51a .43a (.73)
9. Non-GI symptoms (CSSI) 0.84 .61 .34a .18b .40a .43a .33a .41a .40a .56a (.88)
10. Pain interference 30.71 10.71 .42a .21a .60a .56a .63a .61a .55a .58a .65a (.89)
11. Functional disability 1.03 .72 .31a .20a .35a .37a .47a .52a .55a .58a .61a .76a (.87)
12. Medical visits 2.00 n/a .01 −.03 .08 .05 .03 .11 .25a .05 .15 .18b .21a (n/a)
13. Mental health visits .00 n/a .21a .11 .19b .33a .15b .18b .19b .18b .20a .23a .20a .19b (n/a)
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Note. Reliability coefficients (Cronbach’s alpha) are listed in the diagonal. API = Abdominal Pain Index; CSSI = Children’s Somatic Symptom Inventory; GI = gastrointestinal; PBQ = Pain Beliefs Questionnaire; PCS = Pain Catastrophizing Scale.

a

Correlation is significant at the .01 level (two-tailed).

b

Correlation is significant at the .05 level (two-tailed). Healthcare utilization variables (number of medical visits and mental health visits over 3 months) were measured on an ordinal scale and therefore modes are presented in lieu of means.

Data Analysis

Exploratory factor analysis (EFA) and all other analyses were conducted using IBM SPSS version 25.0. Effect size magnitude was interpreted by applying Cohen’s (Cohen, 1977) guidelines; ds of .2, .5, and .8 were interpreted as small, medium, and large effects, respectively. The Kaiser–Meyer–Olkin (KMO) measure and Bartlett’s test of sphericity were used to assess sampling adequacy for factor analysis. The assumption of a linear relationship between all health-related stigma variables was investigated with Pearson correlations, with a cut point of r < .3 used to identify low correlations. A scree plot and principal component analysis was used to determine the number of factors. A factor loading criteria was set at 0.4 (Walker & Maddan, 2008).

Internal consistency of all measures was evaluated using Cronbach’s alpha. Construct validity for the scales was considered adequate if each predicted relation was r ≥ .25. Construct validity was evaluated by examining the correlation of the stigma subscales with related constructs (i.e., mental health symptoms, pain cognitions, physical symptoms, and pain interference). F-tests were used to explore whether any demographic or healthcare utilization variables were significantly associated with scores on stigma constructs as well as to test the hypothesis that individuals with IBS would report greater stigma than those without IBS. Pairwise deletion was used in the case of missing data. No outliers were detected.

Results

Sample Characteristics

Characteristics of the sample are provided in Table I. The majority of adolescent participants were White (87%) and female (65%). The mean age was 14.57 years (SD = 1.86). One hundred four adolescents (58%) met symptom-based criteria for IBS. We used a cutoff score of 1.5 SD above published norms to estimate the portion of the sample reporting clinically significant levels of anxiety (HealthMeasures, 2020a) and depression (HealthMeasures, 2020b). The number of participants who reported elevated levels of anxiety (PROMIS score > 27) and depression (PROMIS score > 26) were 30 (17%) and 19 (11%) respectively, compared with an expected 7% prevalence in the general population.

Table I.

Sample Characteristics

M (SD)/N(%)
Age 14.57 (1.9)
Gender
 Male 62 (34.6%)
 Female 117 (65.4%)
Race
 White 156 (87.2%)
 African American 11 (6.1%)
 Native American or Alaskan native 2 (1.1%)
 Multiracial/other 10 (5.6%)
Other chronic pain
 Nonabdominal chronic pain 77 (43.0%)
 Chronic widespread pain 9 (5.0%)
 No other chronic pain 102 (57.0%)
FGID diagnosis
 IBS 104 (58.1%)
 Functional dyspepsia 27 (15.1%)
 IBS and functional dyspepsia 5 (2.8%)
 Functional abdominal pain NOS 48 (26.8%)
 PROMIS mental health scores
 Elevated anxiety 30 (16.8%)
 Elevated depression 19 (10.6%)
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Note. Total sample N = 179. NOS = not otherwise specified.

Factor Structure

EFA evaluated the extent to which the factor structure was consistent with three hypothesized factors (perceived stigma, internalized stigma, and SC). Adequacy of sample size was confirmed using the KMO measure (Kaiser, 1974; KMO for the preliminary health-related stigma items = .91) and Bartlett’s test of sphericity (df = 153, χ2 = 1713.53, p < .001; no communalities < .50 identified). A correlation matrix tested the assumption of linear relations between all items. Two items had low or negative correlations with all other items and were therefore removed (see Supplementary Appendix B for further details). The remaining 16 items met the assumption of a linear relationship between variables.

A scree plot failed to identify a distinct elbow. A principal component analysis revealed three factors with eigenvalues greater than one. Each of the three factors explained at least 5% of the total variance, and a three-factor solution explained 64.74% of the total variance. The direct oblimin rotation method was used because a correlation between these three factors was expected. The factor correlation matrix confirmed that all three factors were correlated with one another (Pearson correlations ranged from .33 to .55, confirming a nonorthogonal relationship). Thus, a promax rotation method was used. The resulting pattern matrix identified a first factor including the majority of the preliminary perceived and internalized stigma items. A second factor comprised all of the concealment items, and a third factor comprised two items related to malingering (“People would think I was faking it if I told them about my symptoms”; “People would think I was exaggerating if I told them about my symptoms”). Further consideration led to the conclusion that perceptions of malingering, although closely related, are theoretically distinct from perceived stigma. Thus, the malingering items were deleted and the EFA re-run on the 14 remaining items.

The resulting pattern matrix is depicted in Table II. The results demonstrated a two-factor solution which explained 60.31% of the total variance. All items met the criteria of factor loadings ≥ .4. The nine perceived and internalized stigma items loaded most strongly on Factor 1, whereas the five SC items loaded most strongly on Factor 2. Again, the loading of both perceived and internalized stigma items on Factor 1 suggests that these constructs are so closely related that they do not present as discrete in the current sample. This result supports the utility of the term “felt stigma” (Brohan et al., 2010), which will be used to refer to the combined perceived and internalized stigma factor identified through EFA. The two identified factors, FS and SC, were significantly correlated (r = .62).1 Thus, the pattern matrix supported the hypothesis that concealment behavior is a discrete construct that is separate, but related to, FS. As such, the updated two-factor measure was titled the FS and Concealment Questionnaire (FSC-Q; see Supplementary Appendix A for the final version of the measure). A total FS scale score was created by averaging responses to the nine FS items. A total SC scale score was created by averaging responses to the five individual SC items.

Table II.

Final Pattern Matrix

Factor 1: felt stigma (FS) Factor 2: stigma concealment (SC)
I feel bad about myself because of my symptoms (internalized stigma). .86
Some people would tease me if they knew about my symptoms (perceived stigma). .82
My symptoms make me feel less attractive (internalized stigma). .79
I feel disgusting because of my symptoms (internalized stigma). .78
I am a burden to others because of my symptoms (internalized stigma). .77
Most people would be uncomfortable around me if they knew about my symptoms (perceived stigma). .75
People would avoid me if they knew about my symptoms (perceived stigma). .71
I feel different from other kids because of my symptoms (internalized stigma). .62
I’m embarrassed about my symptoms (internalized stigma). .49
I avoid telling others about my symptoms (SC). .92
I try not to let other people know when I’m having symptoms (SC). .85
I hide my symptoms from others (SC). .80
I am careful who I tell about my symptoms (SC). .79
I don’t want my parents to tell anyone about my symptoms (SC). .46
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Note. Original hypothesized stigma category for each item provided in parentheses. Extraction method was principal axis factoring and rotation method was promax with Kaiser normalization. A rotation converged in three iterations.

Descriptive Characteristics

The mean for the FS scale was 2.23 with a SD of 0.95 and a range from 1.00 to 4.78. The mean for the SC scale was 3.00 (SD = 0.98; range 1.00–5.00).

Internal Consistency

Internal consistency of the FSC-Q was evaluated using Cronbach’s alpha. Cronbach’s alpha was .91 for the FS scale and .85 for the SC scale.

Relations Between the Stigma Constructs and Other Variables

Demographic Variables

Older participant age was associated with greater FS (r = .15, p = .044) but not with SC (r = .09, p = .260). There were no significant sex differences in FS (F[1,177] = 2.66, p = 0.105) or SC (F[1,177] = .45, p = .503).

Type of FAP

FS was significantly higher among adolescents who met Rome III criteria for IBS (M = 2.42, SD = 0.95) than among those who did not (M = 1.97, SD = 0.90; F[1,177]=10.44, p = 0.001). This was a medium-sized effect (d = .49). Similarly, SC was higher among participants with IBS (M = 3.18, SD = 0.92) than among those without (M = 2.75, SD = 1.02; F[1,177] = 8.57, p = .004; d = .44).

Construct Validity

Construct validity of the FSC-Q was evaluated by examining the correlation of FS and SC with mental health symptoms (anxiety and depression), pain cognitions (pain catastrophizing and pain threat appraisal), physical symptoms (abdominal pain, GI, and other somatic symptoms), and functional impairment (functional disability and pain interference). All predicted relations were statistically significant, in the expected (positive) direction, and small-to-medium in magnitude (see Table III). Neither FS nor SC was significantly associated with number of medical visits. FS was positively associated with mental health service utilization (r = .21, p = .005; small effect size).

Degree of FS and Concealment in Adolescents with FAP

A total of 37 (21% of) participants scored above the midpoint of the possible range on FS and 93 (52%) scored above the midpoint of the possible range on SC, indicating average responses in the range of “agree” to “strongly agree”. Among the 104 participants who met criteria for IBS, 25 (24%) scored above the midpoint on FS and 61 (59%) scored above the midpoint on SC.

Discussion

FS is a risk factor for poor outcomes in a wide range of health conditions, yet the literature lacks validated assessment tools that clearly distinguish between various aspects of stigma. This study describes the development and validation of the FSC-Q, a measure designed to assess distinct stigma-related constructs hypothesized to affect health outcomes in adolescents with FAP. The finding that EFA did not support a differentiation between perceived stigma and internalized stigma supports the utility of the term “felt” stigma (comprising both perceived and internalized stigma; Brohan et al., 2010) in the current sample. This suggests that the beliefs and emotional responses that participants endorsed about their symptoms were so strongly linked to the reactions that they anticipated from others that these concepts were not easily differentiated. Whether the term “felt stigma” is worth adopting more broadly in stigma research to encompass cognitive and emotional reactions to stigma, or whether this result is specific to certain characteristics of the current sample (e.g., age, health condition) warrants further investigation.

Theory and prior research led us to hypothesize that SC would be distinct from other aspects of stigma. Consistent with this hypothesis, SC emerged as a distinct factor in EFA. Both the FS and SC scales had good internal consistency as well as good construct validity, based on significant associations with health outcomes that prior literature has linked to various aspects of stigma. Overall, results support the use of the FSC-Q to assess FS and SC in adolescents with FAP. Whether the FSC-Q may be a valid and reliable tool for assessing these constructs in other samples should be tested in future research.

Predicted relations between stigma-related constructs and measures of mental health, physical health, and functioning were confirmed. Also consistent with hypotheses, both FS and SC were significantly higher among participants with IBS compared with those without. Exploratory analyses indicated that greater FS was significantly associated with greater mental health service utilization. Although these data are cross-sectional and directionality cannot be determined, one interpretation of this finding is that individuals experiencing higher FS are more likely to seek mental health services to address emotional distress related to FAP. Another possibility is that individuals receiving mental health services are more likely to have a mental health disorder that increases the perception and internalization of FAP-related stigma. Consistent with either of these interpretations, both FS and mental health service utilization were significantly associated with greater anxiety and depressive symptoms as well as maladaptive cognitions (catastrophizing and elevated pain threat).

Stigma concealment, in contrast, was not significantly related to mental health service utilization. At first glance, this may be surprising; SC, like FS, was associated with mental health symptoms and maladaptive cognitions that would be expected to correlate with mental health treatment seeking. However, this result makes sense if one considers that the SC scale does not specify from whom the participant conceals their FAP. Attempts to conceal one’s FAP from everyone (including mental healthcare providers) would be expected to decrease mental health treatment seeking.

Roughly, a quarter of the participants in the present sample endorsed FAP-related FS and roughly half reported concealing their FAP from others. Rates of concealment among those with IBS were slightly higher, with nearly 60% reporting concealment. These findings parallel the results of several prior studies. In a sample of adolescents with epilepsy, 40% of participants endorsed thinking that having epilepsy affects whether others like them, whereas 69% reported keeping their epilepsy a secret from others (Westbrook et al., 1992). In a study of adolescents with SCD-related pain episodes, 48% reported believing that others might not like them if they knew the participant had SCD, whereas 75% reported keeping their SCD a secret (Martin et al., 2018). In a sample of adults with IBS, 31% stated that others think their IBS is “all in their head”, whereas 63% reported limited disclosure (Jones et al., 2009). This pattern of endorsing concealment in the absence of perceived stigma makes sense within a risk assessment framework. That is, individuals may perceive the likelihood of rejection from others as low but evaluate the potential negative consequences of disclosure as so great that they avoid disclosure of a potentially stigmatizing condition.

It is important to note that the heterogeneity in FAP symptoms likely influenced participants’ responses to the FSC-Q. Stigma may be more prevalent in some manifestations of FAP than others, as evidenced by the greater endorsement of stigma among participants who met criteria for IBS. Future researchers may wish to use eligibility criteria with a higher degree of diagnostic specificity. In addition, research should investigate the consequences of stigma in individuals with more than one potentially stigmatizing condition, as is frequently the case with chronic pain and mental health disorders.

A strength of this study is our use of a theory-driven approach followed by exploratory (rather than confirmatory) factor analysis to determine whether items hypothesized to represent three stigma-related constructs would independently emerge as distinct (DeVellis, 1991). The study is limited by a cross-sectional design that does not address potential causal relations among variables. The lack of diversity in the sample prevented investigation of potential racial, ethnic, or cultural differences and limits the generalizability of our findings.

Future work in this area will benefit from investigation of the processes by which adolescents decide whether to disclose a stigmatizing condition to others. Models of disclosure decision-making have been tested in various adults populations, including those with mental illness (Pahwa, Fulginiti, Brekke, & Rice, 2017; Venetis, Chernichky-Karcher, & Gettings, 2018), nonvisible health conditions (Greene et al., 2012), and a variety of other concealable stigmatized identities (Chaudoir & Quinn, 2010). However, little attention has been given to how adolescents make decisions regarding disclosure (with the exception of adolescents with HIV; Hogwood, Campbell, & Butler, 2013; Lee, Yamazaki, Harris, Harper, & Ellen, 2015; Thoth, Tucker, Leahy, & Stewart, 2014). A growing literature suggests that the reaction of the confidant is one of the most important factors influencing the effect of disclosing a potentially stigmatizing condition on health-related outcomes (Chaudoir & Fisher, 2010). Identifying contextual variables (e.g., timing and method of the disclosure, characteristics of the disclosure confidant) that affect disclosure outcomes will be highly relevant to informing recommendations for whether, how, and to whom adolescents with stigmatizing conditions should disclose their stigma to others.

Until additional research is conducted, clinicians and other stakeholders will have to rely on existing recommendations for decreasing the adverse personal, social, and economic consequences of stigma. A recent review outlined such recommendations with regard to chronic pain (De Ruddere & Craig, 2016). Given that health care providers frequently endorse stigmatizing beliefs toward individuals with chronic pain (Chibnall, Tait, & Ross, 1997; De Ruddere, Goubert, Stevens, Williams, & Crombez, 2013; De Ruddere et al., 2014) and feel unequipped to treat these patients (Slade, Molloy, & Keating, 2012), a sensible first step may be to increase medical education on chronic pain using the biopsychosocial model (Cohen, Quintner, Buchanan, Nielsen, & Guy, 2011; De Ruddere & Craig, 2016; Kress et al., 2015; Notcutt & Gibbs, 2010).

However, stigma-reducing interventions are most effective when targeting multiple socio-ecological levels (Heijnders & Van Der Meij, 2006; Stangl et al., 2019). At the individual level, several psychological interventions have been designed to target internalized stigma, including acceptance and commitment therapy, mindfulness-based approaches, and other interventions focusing on self-compassion (Lillis, Hayes, Bunting, & Masuda, 2009; Luoma, Kohlenberg, Hayes, Bunting, & Rye, 2008; Luoma & Platt, 2015). Similarly, support groups may empower individuals with stigmatizing conditions to reject society’s negative stereotypes and increase self-efficacy for achieving valued life goals (Corrigan & Rao, 2012; Crabtree, Haslam, Postmes, & Haslam, 2010; Lucksted et al., 2011).

More precise measurement of stigma-related constructs will enable testing of hypothesized models of the mechanisms by which stigma impacts health and ultimately facilitate the identification of novel targets for psychotherapeutic intervention. The FSC-Q may help to advance research in this area, leading to the development of more effective interventions for individuals with stigmatizing health conditions.

Funding

This work was supported by NIH (Eunice Kennedy Shriver National Institute of Child Health and Human Development [NICHD]) grant R01HD076983.

Conflicts of interest: The authors declare no conflicts of interest.

Supplementary Material

jsaa030_Supplementary_Data
Click here for additional data file. (29.1KB, zip)

Acknowledgments

The authors thank Craig Anne Heflinger, Laurie Keefer, Tiffany Taft, and Julie Anderson for their role as content experts during measure development, and Craig Anne Heflinger for her helpful comments.

Footnotes

1

When the two scales were correlated (r = .64).

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