Clin Rheumatol DOI 10.1007/s10067-014-2516-3

ORIGINAL ARTICLE

Feelings of guilt and shame in patients with rheumatoid arthritis Peter M. ten Klooster & Lieke C. A. Christenhusz & Erik Taal & Frank Eggelmeijer & Jan-Maarten van Woerkom & Johannes J. Rasker

Received: 12 July 2013 / Revised: 18 January 2014 / Accepted: 26 January 2014 # Clinical Rheumatology 2014

Abstract This study aims to determine whether patients with rheumatoid arthritis (RA) experience more general feelings of guilt and shame than their peers without RA and to examine possible correlates of guilt and shame in RA. In a crosssectional survey study, 85 out-patients with RA (77 % female; median disease duration, 11 years) and 59 peer controls completed the Experience of Shame Scale (ESS) and the Test of Self-Conscious Affect (TOSCA). Patients additionally completed measures of health status, self-efficacy, cognitive emotion regulation, and numerical rating scales for life satisfaction and happiness. Patients and peer controls were well matched for sociodemographic characteristics. No significant differences between patients and controls were found for guilt or different types of shame as measured with the TOSCA or ESS. In multivariate analyses, female patients reported more feelings of bodily shame and higher guilt proneness, while younger patients reported more character and bodily shame. Worse social functioning and more self-blaming coping strategies were the strongest independent correlates of shame. Shame proneness was only independently associated with more self-blame, whereas guilt proneness was only associated with female sex. None of the physical aspects of the disease, including pain and physical functioning, correlated with feelings of guilt and shame. Patients with longstanding RA do not experience more general feelings of shame or guilt than their peers without RA. Shame and guilt in RA is primarily associated with demographic and psychosocial characteristics and not with physical severity of the disease. P. M. ten Klooster : L. C. A. Christenhusz : E. Taal : J. J. Rasker (*) Department of Psychology, Health & Technology, University of Twente, PO Box 217, 7500 AE Enschede, The Netherlands e-mail: [email protected] F. Eggelmeijer : J.
Keywords Affect . Coping . Guilt . Health status . Rheumatoid arthritis . Shame

Introduction Rheumatoid arthritis (RA) is a common chronic inflammatory disease that can affect people of all ages and sexes, but increases in prevalence with age and affects more women than men [1]. Inflammation in the joints causes functional disability, pain, and joint destruction [1]. Patients with RA have a mean reduction in life expectancy of 5–10 years [1] and up to 10–15 years in severe cases [2], which can be partly explained by increased incidence of cardiovascular diseases [3]. The disease has a major impact on patients’ physical, psychological, and social wellbeing [4–8]. Within 10 years of disease onset, approximately half of the patients are unable to work [9] and many have difficulty with doing household chores [10]. Complaints can change from day to day; the unpredictability of the disease, together with its often invisible nature, can result in a lack of understanding in the social and work environment [11–13]. People with RA become more and more dependent upon others and many encounter sexual problems [9, 14, 15]. Overall, living with and managing RA, including dealing with loss of independence, alteration of selfimage, and change or loss of social roles, can have important implications for patients’ identity within the private and public domains of their lives [16]. It has been suggested that the experience of loss, such as loss of independence, work and social activities, and body image and sexuality, frequently lead to development of feelings of guilt and shame in patients with RA [17]. Guilt and shame are related, but distinct negative self-conscious and moral emotions [18]. Although often used interchangeably, guilt is most commonly linked to specific behaviors that are negatively evaluated, whereas shame is directly about the self,

Clin Rheumatol

which is the focus of evaluation [19]. Both can be conceptualized as either traits (proneness to shame and guilt across situations) or states (feelings of shame and guilt at a given moment) [20]. Some previous studies have indeed reported that patients with RA may experience a wide range of feelings of guilt and shame with respect to their disease. However, these studies usually did not specifically focus on guilt or shame, were often performed in the era before effective therapies were available, and often used qualitative research methods. For instance, a qualitative study in patients with RA suggested that patients did experience feelings of shame and guilt, for instance when they had to say they were unable to perform certain tasks or for taking out their emotions on their family and friends [21]. In another study, patients reported several specific feelings of shame and guilt with respect to wearing therapeutic footwear, such as shame for the condition of their feet when and while wearing the footwear and feelings of guilt about being perceived as a “difficult” patient by practitioners or about not wearing the provided foot wear [22]. Other studies have suggested that women with RA felt guilty about not being able to care for their family [23] or the possibility that they had passed their disease on to their children [24, 25]. In a series of 89 patients with newly established disease, Eberhardt et al. found that the reasons for the patients to feel guilty varied considerably, from not being a good sexual partner, not being able to do the same things with their children as healthy parents, to not being able to keep the house tidy [26]. Recent studies in other chronic pain conditions, such as low back pain, also indicated that patients treated their own pain as a stigma and were more vulnerable to shame and suggested that the relationship between chronic pain and shame should be further examined [27, 28]. To date, however, no studies have thoroughly examined whether RA is associated with increased general feelings or proneness to guilt and shame using validated quantitative methods. Therefore, the aims of this cross-sectional survey study were to determine whether Dutch patients with RA experience more generalized guilt and shame than their peers without RA and to examine possible correlates of guilt and shame in RA.

Methods Participants Respondents for this study were recruited at the out-patient rheumatology clinic of a district hospital located in the center of the Netherlands. In total, 100 adult consecutive patients fulfilling the ARA criteria for RA [29] were asked to participate by their treating rheumatologist. All patients were asked to also invite a neighbor or friend without RA of

the same sex and about the same age to participate in the study as a control person. Patients willing to participate received a survey package including the cover letters, information leaflets, informed consent forms, and stamped return envelopes for both surveys. After 3 months, a reminder was sent to all participating patients. According to local regulations in the Netherlands (WMO), no approval of the ethical review board was needed. Measures The first section of the patient and control questionnaires contained demographic items including age, sex, level of education, and marital status. Both patients and controls also completed two validated measures of guilt and shame. The patient survey additionally included standardized measures of health-related quality of life, pain, arthritis-related selfefficacy, cognitive emotion regulation, life satisfaction, and happiness. Shame and guilt were measured with Dutch versions of the Experience of Shame Scale (ESS) [30] and the Test of SelfConscious Affect-3 (TOSCA) [31]. The ESS is a 25-item questionnaire that assesses the frequency of characterological, behavioral, and bodily shame experiences over the past month. Respondents rate each item on a scale ranging from 1 (not at all) to 4 (very much), with higher scores indicating greater shame. The ESS has shown good construct and discriminant validity, factorial validity, internal consistency, and test-retest reliability for the total scale and the three subscales [30]. The TOSCA is a reliable and well-validated scenariobased measure of proneness to shame and guilt. Respondents are presented with 16 brief hypothetical scenarios that they may encounter in daily life followed by four to six possible reactions, which reflect shame, guilt, externalization of blame, detachment-unconcern, and pride. Each possible response is rated on a five-point scale from 1 (not likely) to 5 (very likely). For the purpose of the present study, only the shame and guilt response items were analyzed. To measure the health status of patients with RA, we used the Dutch Arthritis Impact Measurement Scales 2 short form (AIMS2-SF) [32]. The AIMS2-SF consists of 26 items that comprise five subscales: physical function, affect (anxiety and depression), symptoms, social interaction, and role. All items have five response categories ranging from “all days, always, or severe” to ”no days, never, or none”. Subscale score are converted to range from 0 to 10, with higher scores representing poorer health. Pain was additionally measured with an 11-point numerical rating scale (NRS) ranging from 0 (no pain) to 10 (unbearable pain). Patients were asked to mark the number that best represented the severity of their pain in the past week. Self-efficacy expectations were measured by means of a Dutch version of the Arthritis Self-Efficacy Scale (ASES)

Clin Rheumatol

which measures patients’ perceived ability to perform specific behaviors aimed at controlling pain and other symptoms associated with arthritis [33, 34]. The pain management selfefficacy scale consists of five items that measure perceived abilities to cope with arthritis pain. The other symptoms scale consists of six items that measure perceived abilities to cope with other symptoms of arthritis such as depression, fatigue, and frustration. Patients are asked to indicate to what extent they agreed with the statements given on a Likert scale from 1 (thoroughly disagree) and 5 (thoroughly agree). Two specific coping strategies were assessed using the selfblame and rumination subscales from the Cognitive Emotion Regulation Questionnaire (CERQ) [35]. The CERQ measures cognitive strategies people generally use to regulate emotion in response to the experience of threatening or stressful life events. Self-blame refers to thoughts of putting the blame of what you have experienced on yourself, whereas rumination refers to thinking about the feelings and thoughts associated with the negative event. Both subscales consist of four items which are measured on a five-point Likert scale ranging from “(almost) never” to “(almost) always”. Summed subscale range from 4 to 20, with higher scores indicating more use of a specific cognitive strategy. Finally, life satisfaction and happiness were measured using single-item, 11-point NRSs ranging from “satisfied” to “dissatisfied” and from “happy” to “unhappy”.

Data analysis Statistical analyses were performed using SPSS Statistics 20. Respondents with more than 25 % missing values on both the ESS and TOSCA were excluded from analysis. Given the non-normal distribution of most of the data, nonparametric statistics were used where appropriate. Differences between patients and controls in sociodemographic variables and scores on the ESS and TOSCA were tested using Mann– Whitney U tests for continuous variables and chi-square tests for categorical variables. Next, Spearman correlation coefficients were computed to examine bivariate associations between demographic characteristics, scores on the ESS and TOSCA, and other measures in the patient group. To control for potential confounding and to identify independent correlates of shame and guilt, separate hierarchical multiple linear regression analyses were performed with the three subscales of shame on the ESS and the shame and guilt subscales of the TOSCA as the dependent variables. Variables that were most consistently correlated with these subscales in the bivariate analyses were included as predictors in the different regression models. Multicollinearity was inspected by variance inflation factors (VIF), where VIF values >10 and an average VIF substantially >1 were considered indicative of multicollinearity.

Results A total of 86 patients and 72 peer controls returned a survey, but 1 patient and 13 controls had more than 25 % missing values on both the ESS and TOSCA. Median age of the remaining 85 patients was 62 years and their median disease duration was 11 years, pointing to a relatively longstanding disease. All participants (missing data, n=1) had the Dutch nationality and only one patient and one peer control were born outside the Netherlands (missing data, n=2). On a group level, patients and peer controls were well matched, as there were no significant differences in sociodemographic characteristics between the groups (Table 1). Although relatively more patients than controls had a low education, overall educational levels were not significantly different. Both RA patients and their peers experienced very few feelings of characterological, behavioral, and bodily shame over the past month as measured by the ESS (Table 2). Scores on all ESS subscales were highly skewed towards no feelings of shame at all in both groups and scores for patients with RA were even slightly, but nonsignificantly, lower in the RA group. Scores on proneness to shame and guilt as measured by the scenario-based TOSCA were also not significantly different between patients and their peers. Bivariate correlations with shame and guilt in the RA patients are shown in Table 3. Several weak to moderate correlations were observed. Notably, none of the physical aspects of the disease, including pain, physical functioning and symptoms, were significantly correlated with feelings of shame and guilt on any of the subscales. Role (or work) functioning was also not significantly correlated, although only 23 patients with paid work completed this subscale of the AIMS2-SF. The variables most consistently associated with more guilt and shame were female sex, younger age, worse affect (anxiety and depression) and social functioning, and more self-blaming and ruminative coping styles. Separate hierarchical multiple linear regression analyses with these variables are presented in Table 4. Thirty-six to 45 % of the variance in the frequency of feelings of shame on the ESS could be accounted for in the models. Female patients experienced more bodily shame, while younger patients experienced more character and bodily shame. Worse affect remained a significant predictor for behavioral shame only. Worse social functioning and more selfblaming remained as the strongest independent predictors of feelings of shame. Explained variance for shame and guilt proneness as measured by the TOSCA was much lower. Shame was only independently associated with more self-blame, whereas guilt proneness was higher in female patients.

Clin Rheumatol Table 1 Sociodemographic and clinical features of RA patients and their peers

Values are median (interquartile range). Two peer controls did not report their sex IQR interquartile range, NA not applicable, NRS numerical rating scale, AIMS2-SF Arthritis Impact Measurement Scales 2 short form a

Mann–Whitney U tests or Pearson chi-square tests

Characteristic

Patients (n=85)

Peers (n=59)

Sex, n (%) Female Male Age, median (IQR) years Disease duration, median (IQR) years

65 (76.5 %) 20 (23.5 %) 62 (51.0–73.0) 11.0 (5.5–24.0)

43 (75.4 %) 14 (24.6 %) 59 (50.0–70.8)

Educational level, n (%) Low Medium High Other Marital status, n (%) Not married, not living with partner Not married, living with partner Married Widow/widower Divorced NRS Pain (0–10), median (IQR) AIMS2-SF (0–10), median (IQR) Physical function Affect Symptoms Social interaction Role (n=24)

Discussion To our knowledge, this is the first study that examined experiences and proneness to feelings of guilt and shame in patients with RA and peer controls. The most notable finding of the study was that, despite previous suggestions to the contrary, patients with longstanding RA did not experience more general feelings or proneness to shame or guilt than their peers without RA. Moreover, experiences of shame and guilt were only associated with patients’ demographic and psychosocial characteristics, and not with clinical or physical aspects of the disease.

Table 2 Shame and guilt in RA patients and their peers Experience of Shame Scale Characterological shame, 1–4 Behavioral shame, 1–4 Bodily shame, 1–4 Values are median (interquartile range). High scores indicate more shame or guilt for all scales a

Mann–Whitney U tests

Total scale score, 1–4 Test of Self–Conscious Affect Shame, 1–5 Guilt, 1–5

30 (41.7 %) 11 (15.3 %) 28 (38.9 %) 3 (4.2 %)

15 (27.3 15 (27.3 19 (34.5 6 (10.9

%) %) %) %)

8 (9.4 %) 2 (2.4 %) 57 (67.1 %) 15 (17.6 %) 3 (3.5 %) 4.0 (2.0–6.0)

6 (10.3 %) 3 (5.2 %) 35 (60.3 %) 11 (19.0 %) 3 (5.2 %)

3.8 (3.2–4.7) 4.4 (3.6–4.8) 6.7 (4.7–8.0) 5.5 (5.0–6.0) 4.5 (4.0–6.0)

Pa

0.888 0.141 NA

0.103

0.860 NA

NA

Overall, the findings suggest that generalized feelings of shame and guilt are not an important issue in Dutch patients with RA. There are several possible explanations for the finding that scores on the ESS and TOSCA were not significantly higher in patients with RA. First of all, although its exact cause is still unknown, rheumatoid arthritis is now an accepted medical condition among both physicians and the general public. The general public also appears to have fairly realistic ideas about the seriousness and most important consequences of arthritis and do not believe that patients themselves can influence the course and onset of the disease [36, 37]. Therefore, it is likely that there is not much stigma

No. of items

α

Patients

Peers

Pa

12 9 4

0.91 0.92 0.90

1.17 (1.00–1.50) 1.33 (1.11–1.67) 1.00 (1.00–1.67)

1.25 (1.08–1.42) 1.44 (1.22–1.76) 1.00 (1.00–1.73)

0.130 0.068 0.945

25

0.95

1.21 (1.08–1.56)

1.32 (1.20–1.51)

0.117

16 16

0.82 0.67

2.75 (2.25–3.38) 4.19 (3.88–4.54)

2.44 (2.00–3.09) 4.13 (3.80–4.44)

0.061 0.450

Clin Rheumatol Table 3 Spearman correlations with shame and guilt in RA patients

ESS Experience of Shame Scale, TOSCA Test of Self-Conscious Affect, NRS numerical rating scale, AIMS2-SF Arthritis Impact Measurement Scales 2 short form, ASES Arthritis Self-Efficacy Scale, CERQ Cognitive Emotion Regulation Questionnaire *P<0.05; **P<0.01

ESS

TOSCA

Character shame

Behavioral shame

Bodily shame

Sex Age Education Disease duration NRS Pain AIMS2-SF

0.30** −0.25* 0.07 −0.12 0.11

0.13 −0.23* 0.08 −0.04 0.19

−0.28* 0.00 −0.06 0.08

Physical function Affect Symptoms Social interaction Role (n=24) ASES Pain Other CERQ

0.12 0.44** −0.01 0.27* 0.14

Self-blame Rumination NRS Satisfaction NRS Happiness

−0.19 −0.19 0.32** 0.33** 0.14 0.13

attached to RA and that patients do not constantly need to justify or hide the consequences of their disease. The increased knowledge of the pathophysiology of RA in the past decades has also provided a wide range of highly effective treatment options for RA. Currently, RA is generally milder and RA patients are usually much less disabled than those 30–40 years ago. As a result, obvious visible deformities, physical signs, and the use of assistive devices are now much less common. Consequently, generalized feelings of bodily shame such as those reported in patients with breast cancer [38, 39], may not be relevant (anymore) in RA. Feelings of shame and guilt as a result of RA may also be culture-specific. A recent study comparing RA patients in Egypt and the Netherlands showed that the Egyptian RA patients experienced significantly more feelings of guilt about their arthritis than the Dutch patients, although pain and physical disability were not different between both countries [40]. Although no data are available from other cross-cultural comparisons, this may indicate that feelings of guilt and shame in RA play a larger role in non-Western or developing countries. Both the ESS and the TOSCA assess more or less general feelings of shame and both were developed and primarily used in students and populations with psychiatric or psychological problems. Although the ESS does contain a subscale on bodily shame and items about abilities to do things, it does not focus specifically on disease-related issues. The scenario-

0.21 0.42** 0.12 0.29** 0.35 −0.17 −0.15 0.40** 0.42** 0.19 0.17

0.14 0.38** 0.00 0.24* 0.12 −0.14 −0.27* 0.32** 0.28* 0.31** 0.26*

Total

Shame

Guilt

0.25* −0.26* 0.08 −0.11 0.16

0.17 0.04 −0.18 0.15 0.11

0.25* 0.27* −0.03 0.04 −0.01

0.06 0.11 0.02 0.09 0.33

−0.06 −0.04 0.13 0.02 0.22

−0.05 −0.11

−0.02 −0.03

0.17 0.47** 0.06 0.29** 0.27 −0.17 −0.20 0.40** 0.42** 0.23* 0.20

0.26* 0.00 0.21 0.13

0.26* 0.30* 0.19 0.14

based TOSCA approaches shame and guilt as trait variables, and measures proneness to guilt and shame in particular social situations. Moreover, completing the TOSCA is a rather complex task for people unfamiliar to such tests. Although using generic measures was necessary to address the aims of this study, the instruments may not have been sufficiently relevant or understandable to the older patients with RA in this study. This could also explain the highly skewed scores on the ESS and the relatively high number of people with too many missing values on the TOSCA. Scores on the ESS in the current sample were almost twice as low as those found in a population of Dutch patients with psychiatric disorders, while scores on the TOSCA were almost the same in both groups [41] and comparable to those found in undergraduate students [42]. This may be explained by the fact that the ESS measures direct experiences with specific feelings of shame during the past year. Apparently, psychiatric patients are confronted more often with specific feelings of bodily, behavioral, and characterological shame than RA patients, while shame and guilt proneness in hypothetical situations is comparable. Another finding pointing to a rather low relevance of generalized shame and guilt in RA was that neither was associated with disease duration and severity of the disease, as measured by pain, physical functioning, and symptoms. This corresponds with a study by Bendtsen and Hornquist [43] that showed that feelings of guilt were not significantly

0.36 7.92 <0.0001

Adjusted R2 F (df=6) P

0.19 −0.21* 0.15 0.32** 0.30** 0.09 0.43 10.24 <0.0001

0.06 (0.13) 0.00 (0.00) 0.17 (0.05) 0.16 (0.06) 0.05 (0.02) 0.01 (0.02)

B (SE) 0.04 −0.10 0.32** 0.26** 0.34** 0.10

β

ESS Experience of Shame Scale, TOSCA Test of Self-Conscious Affect a 0=male, 1=female *P<0.05; **P<0.01

0.23 (0.12) −0.01 (0.00) 0.07 (0.05) 0.16 (0.05) 0.04 (0.01) 0.01 (0.01)

Sexa Age Affect Social interaction Self-blame Rumination

B (SE)

β

β

Total

0.36 7.81 <0.0001

0.44 (0.19) −0.01 (0.01) 0.14 (0.08) 0.21 (0.08) 0.08 (0.02) −0.01 (0.02)

B (SE) 0.23* −0.25* 0.20 0.26* 0.39** −0.06 0.45 11.01 <0.0001

0.20 (0.12) −0.01 (0.00) 0.11 (0.05) 0.17 (0.05) 0.05 (0.01) 0.01 (0.01)

B (SE)

β 0.15 −0.20* 0.24* 0.31** 0.36** 0.07

0.04 1.44 0.22

0.35 (0.23) 0.00 (0.01) 0.01 (0.10) 0.02 (0.10) 0.07 (0.03) −0.03 (0.03)

B (SE)

Shame

Bodily shame

Character shame

Behavioral shame

TOSCA

ESS

Table 4 Multiple linear regression analyses for shame and guilt in RA patients

0.21 0.07 0.01 0.02 0.38* −0.16

β

0.20 3.86 <0.01

0.47 (0.14) 0.01 (0.00) −0.04 (0.06) −0.02 (0.06) 0.02 (0.02) 0.03 (0.02)

B (SE)

Guilt

0.37** 0.18 −0.09 −0.04 0.17 0.26

β

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lower in probable and definite RA than in the more severe form of classical RA and did not differ in patients with minor, medium, or major functional impairment. In that study, accepting the disease was associated with less guilt and tension and more endurance [43], showing the possible benefit of acceptance in RA. In the multivariate analyses, female sex, younger age, worse social functioning, and using more self-blaming coping strategies were the strongest independent correlates of feelings of shame. Shame proneness was associated with self-blaming only, while guilt proneness was associated only with female sex. The finding that women report more guilt and (especially bodily) shame, corresponds with many other studies that have examined gender differences across both clinical and nonclinical populations. From their extensive empirical studies of shame, Tangney and Dearing [44] concluded that experiences of shame are more common among females of all ages than among males (p. 154). The current study focused on patients with RA only. However, rheumatic diseases vary widely in their underlying disease mechanisms, clinical manifestations, progress and severity, and composition of the populations. Therefore, the low scores for shame and guilt found in this study may not be generalizable to other rheumatic diseases, such as fibromyalgia or gout. The causes and diagnosis of fibromyalgia, a condition which is characterized by symptoms and impact similar to RA, for instance are still unclear and much debated [45, 46]. This has been found to lead to skepticism regarding the validity of these illnesses as medical diseases and dismissal of its physical symptoms [47]. Gout, on the other hand, does have a clear pathogenesis. However, this condition is often surrounded by stereotypical and trivializing attitudes toward its causes and impact, which have been suggested to lead to shame and embarrassment among patients living with the disease [48]. It would be interesting to further examine possible issues of shame and guilt and the robustness of the current findings in these and other rheumatic conditions. In conclusion, generalized feelings of shame and guilt do not appear to be a major issue in patients with longstanding RA. Patients did not experience more generalized feelings of shame or guilt than their peers without RA. Moreover, shame and guilt were primarily associated with demographic and psychosocial characteristics and not with the physical severity of the disease.

Competing interest statement The authors have no competing interests to report.

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