Qual Life Res DOI 10.1007/s11136-014-0653-4

Enacted and internalized stigma and quality of life among people with HIV: the role of group identity Maria J. Fuster-Ruizdeapodaca • Fernando Molero Francisco Pablo Holgado • Sonia Mayordomo

•

Accepted: 19 February 2014 Ó Springer International Publishing Switzerland 2014

Abstract Purpose This study analyzes the mediating role of social identity in the relationship between enacted stigma and internalized stigma and quality of life of people with HIV. Methods A total of 557 people with HIV participated in this study. Participants were recruited from hospitals and non-governmental organizations. Questionnaires measuring perceived stigma (Berger’s HIV Stigma Scale), social identity (Cameron’s three factor identity scale), and quality of life (Ruiz and Baca’s Quality of Life Questionnaire) were administered. The instruments were adapted for use with the Spanish population. Structural equation modeling (SEM) was used to test the mediation model, and multigroup SEM was conducted to evaluate its invariance. Results Both enacted stigma and internalized stigma had a negative influence on the quality of life of people with HIV, but this influence occurred in different ways. Enacted stigma had a direct negative influence on quality of life. No dimension of group identity protected people with HIV from its negative influence. However, the negative influence of internalized stigma was totally mediated by some

M. J. Fuster-Ruizdeapodaca
F. Molero (&) Department of Social and Organizational Psychology, Universidad Nacional de Educacio´n a Distancia (UNED), Madrid, Spain e-mail: [email protected] F. P. Holgado Department of Methodology of Behavioral and Health Sciences, Universidad Nacional de Educacio´n a Distancia (UNED), Madrid, Spain S. Mayordomo Department of Social Psychology and Methodology of Behavioral Sciences, Universidad del Paı´s Vasco, San Sebastia´n, Spain

dimensions of group identification, mainly through ingroup affect. Conclusions Group identification not only did not protect people with HIV from the negative effects of stigmatization, but it may even be detrimental in the case of internalized stigma. This suggests that in highly stigmatized groups, the salience of identity is negative and worsens the members’ opinion of their own group. This argues for different kinds of intervention to improve the quality of life of people with HIV. Keywords

HIV
Stigma
Group identity
Quality of life

Introduction In many countries, including Spain, it has been documented that people with HIV are victims of stigma and discrimination [1–3]. The stigma associated with HIV is a complex construct coming from different sources. An important classification of HIV-related stigma is one that differentiates between enacted stigma and internalized stigma [2, 4, 5]. Enacted stigma refers to the actual experiences of prejudice, discrimination, and exclusion described by the stigmatized people [4, 6, 7]. Internalized stigma, or self-stigma, consists of the individual’s personal acceptance of stigma as a part of her or his own value system and self-concept [7, 8]. According to the literature, people with HIV present a high degree of internalization of stigma [9] that is sometimes higher than the enacted stigma expressed by the majority [10]. Internalized stigma leads to feelings of blame, self-contempt, isolation, depression, anxiety, or hopelessness [5–9]. Numerous investigations show that HIV-related stigma impacts negatively on quality of life, defined in terms of psychological well-being, social support, life satisfaction,

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and physical health [11, 12]. In addition, several studies show that stigma also causes a loss of social support, an increase in loneliness and has negative effects on physical health [13–16]. Regarding internalized stigma specifically, it was found that higher levels were significantly associated with more depression, lower self-esteem, and lower social support [10]. Nevertheless, stigmatized people are not passive recipients of prejudice and discrimination; on the contrary, they are active perceivers who interpret, cope with, and respond to stigmatization in several ways [17]. One of the resources that stigmatized individuals may use to alleviate the negative effects of stigma on well-being is group identification. As Branscombe et al. [18] point out, when devaluated group members believe that acceptance and fair treatment by members of the majority is improbable, identifying with one’s own group may be a good strategy for obtaining more satisfactory interpersonal relationships and increasing social support. Research shows that group identification is associated with lower levels of depression, more positive self-esteem, and increased general psychological adjustment [19, 20]. Group identification can be considered to be a multidimensional construct [21–23] that includes cognitive, emotional, and relational aspects, as well as behavioral implications [24]. The model suggested by Cameron [21] proposes that social or group identity is comprised of three dimensions: cognitive centrality, in-group affect, and ingroup ties. Cognitive centrality refers to the frequency with which membership in a given group ‘‘comes to mind.’’ Ingroup affect refers to the specific emotions that arise from group membership. Lastly, in-group ties refer to the psychological bonds between the individual and the group or other group members [21, 25]. In the case of people with HIV, there is little quantitative research focusing on their group identity and its effects on their quality of life. Molero et al. [26] found that, in contrast to other stigmatized groups, group identification did not protect people with HIV from the negative effects of prejudice on well-being. The positive effect of group identity on well-being was indirect: Identification was positively related to collective action intention, which, in turn, positively influenced the well-being of people with HIV. Fuster [27] explored the three dimensions proposed by Cameron [21] in a qualitative study of 40 people with HIV, one-half of whom were active members of non-governmental organizations (NGOs). Results showed that many of the people interviewed had in-group ties that frequently led to benefits in terms of social support. Results also showed that, especially in the group of people who did not belong to any NGO, the cognitive prominence of group identity was based mainly on negative aspects such as anxiety derived from health problems or the stigmatization of

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Table 1 Demographics and clinical features of the participants (N = 557) Gender Male

70.8

Female

28

Transsexual

1.3

Age, years (mean ± SD)

43.43 ± 8.09

Education level No study

7.1

Elementary school

34.6

High school

41.1

University degree

15.1

Other Marital status Married/living with a partner

2 31.4

Divorced/separated

16.1

Single

45.4

Widowed

7.1

Work situation Working legally (with a legal contract)

31.7

Working illegally (without any contract)

9.4

Unemployed

58.9

Sexual behavior Heterosexual

56.4

Homosexual

33.1

Bisexual

6.1

No answer

4.4

Transmission route Unprotected sexual relations Sharing injection materials

57.7 21.3

Transfusion

.4

Unknown (various concomitant practices)

20

Other

.5

Duration of infection, years (mean ± SD)

13.5 ± 7.6

Taking antiretroviral therapy

88.2

CD4 cell count, cells/mm3 (mean ± SD)

557.8 ± 288.7

Undetectable plasma viral load

62.7

Data in percentages unless otherwise stated

having HIV. Also in the latter group, it was found that the affect linked to group membership tended to be negative in most cases. The severity of disease, the stigma, or the perceived limitations were the source of this negative affect. But the NGO members had a more positive social identity, with strong group ties and a more positive affect because of their group membership. There has been little research conducted on the role of group identity in people with HIV in their quality of life, and most of the investigations carried out have considered it to be a one-dimensional concept. We conducted the present study to fill this gap. The primary goal of this study

Qual Life Res

was to analyze the mediating role of social identity in the prediction of the negative effects of two sources of stigma (enacted and internalized) on the quality of life of people with HIV. For this purpose, we first analyzed the effects of enacted and internalized stigma on quality of life, and then, we examined the possible mediating role of the diverse factors of group identity. In view of the role of identity in collective action, we also analyzed possible differences in the model as a function of whether or not the participants were members of an NGO (activist and non-activist participants).

Methods

goodness of fit index (AGFI) = .96, standardized root mean square residual (RMSEA) = .0.54, 90 % CI [.050, .059], comparative fit index (CFI) = .98; and Satorra– Bentler v2(398, N = 458) = 813. 28, p \ .001, v2/df = 2.04, GFI = .96, AGFI = .96, RMSEA = .051, 90 % CI [.046, .056], CFI = .98, for first and second-order, respectively. The scores for the items in each second-order dimension were averaged to yield a composite score for each dimension to be used as indicators in the final structural equation model. These two dimensions were Enacted Stigma, which loaded on the factors of Personalized Stigma and Concern with Public Attitudes, and Internalized Stigma, made up of Negative Self-Image and Disclosure Concerns. The reliability of the scales was satisfactory (see Table 2).

Participants Group Identification Scale A total of 557 people with HIV participated in this research. Of them, 31 % were active members of an NGO. Most of the participants were men, and more than one-half of them were heterosexual, single, and not currently working. On average, the participants had been infected by HIV for more than ten years, and more than one -half of them had had acquired the infection through sexual contact. Medically, they were currently taking antiretroviral therapy and had a good immunological and virological status (Table 1). Measures Perceived Stigma Scale To measure perceived stigma, we used an adapted version of the HIV Stigma Scale [6, 28]. This scale has a fourfactor structure. The first factor, Personalized Stigma, contains items related to the experiences of rejection that the interviewees had suffered personally. The second factor, Disclosure Concerns, is made up of items regarding behaviors aimed at withholding the information that the person had HIV. The third factor, Negative Self-Image, is made up of items that express feelings of guilt, deserving punishment or avoiding sexual relations for fear of transmission. Lastly, the fourth factor, Concern with Public Attitudes, is made up of items about the perception of social rejection toward people with HIV. The final scale is made up of 30 items rated on a 4-point Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree). Previously, through confirmatory factor analysis (CFA), a first-order factor structure made up of the four original factors of the scale and a second-order bi-dimensional structure were obtained as indicators of construct validity: Satorra-Bentler v2(339, N = 458) = 934.96, p \ .001, v2/df = 2.3, goodness of fit index (GFI) = .96, adjusted

To measure in-group identification, we used the multidimensional scale proposed by Cameron [21]. This scale measures three dimensions of social identity (cognitive centrality, in-group affect, and in-group ties). In the validation article of the scale, Cameron [21] used various versions that included between 11 and 18 items. For this study, we selected 14 of the items provided by Cameron. The first factor, cognitive centrality, had four items referring to the cognitive prominence of group membership. The second factor, in-group affect, had four items that rated the extent to which the feelings of being a part of the group were positive. The third factor, in-group ties, was made up of six items that explored the feeling of group membership and the ties with other members. The scale is rated on a 7-point Likert-type scale, ranging from 1 (strongly disagree) to 7 (strongly agree). The first factor, cognitive centrality, presented very low reliability (a = .31), as two of the four items had a very low homogeneity index (\.20). Therefore, we decided not to use this factor in the final structural equation model. Thus, we conducted confirmatory factor analysis with two latent factors (in-group affect and in-group ties). The results showed a reasonable fit of the model to the data, v2(26, N =500) = 107.77, p \ .001, v2/df = 4.1, GFI = .98, AGFI = .97, RMSEA = .079, 90 % CI [.064, .095], CFI = .92. The scores for the items in each dimension were averaged to yield a composite score for each dimension to be used as indicators of in-group affect and in-group ties in the final structural equation model. The internal consistency of the scales was reasonable (Table 2). Quality of Life Scale To measure the participants’ quality of life, we used Ruiz and Baca’s [29] Quality of Life Questionnaire. This scale is

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Qual Life Res Table 2 Descriptive statistics and correlations among the latent variables Cronbach’s a

1

.67

.87

–

.61

.84

.52**

3.17

1.65

.71

-.31**

-.50**

3.97

1.49

.65

.00

-.19**

.07

3.56

.69

.90

-.37**

-.33**

.37**

Variable

M

1. Enacted stigmaa

2.56

2. Internalized stigmaa

2.45

3. In-group affectb 4. In-group ties

b

5. Quality of lifec a

The scale has a range of 4 points

b

The scale has a range of 7 points The scale has a range of 5 points

c

SD

2

3

4

– – – .04

* p \ .05; ** p \ .01

made up of 39 items and measures four factors of quality of life: social support, general satisfaction, physical and psychological well-being, and absence of occupational overload/free time. As a large percentage of people with HIV do not work because of their health problems or for other reasons [30, 31], we decided to use only the first three factors in this investigation and to eliminate the factor related to the work sphere and free time. We also eliminated items that refer to the working world, although they belong to the subscale of general satisfaction. Thus, the scale was made up of 21 items rated on a 5-point Likert scale ranging from 1 (not at all) to 5 (very much). Factor one, social support, contained items essentially referring to the type of relations established with family and friends as well as perceived social support. The second factor, general satisfaction, contained items referring to the degree of perceived global satisfaction regarding interest in life, character, money, etc. The items of the factor related to physical and psychological well-being referred to the perceived level of health, energy, sleep, anxiety, etc. Quality of life was used as a one-dimensional construct in order to make the model more parsimonious and to have a single, final, endogenous latent variable. We first assessed the fit of the scale through confirmatory factor analysis. The results showed that, although the RMSEA value was acceptable but improvable, the remaining indices showed good fit, v2(170, N = 450) = 802.14, p \ .001, v2/df = 4.7, GFI = .98, AGFI = .97, RMSEA = .091, 90 % CI [.085, .097], CFI = .97. Analysis of the internal consistency of the scale showed high reliability of the latent dimension (see Table 2). The instruments were adapted for use with the Spanish population according to the International Test Commission guidelines [32]. Procedure Ethical approval and permission to conduct the research were granted by the NGOs and hospitals involved in the

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study. The data were collected from April to September 2009 and included 13 of the 17 Spanish Autonomous Communities. The questionnaire was distributed among the NGOs that work in the HIV field and in units for people with HIV in diverse hospitals. The questionnaire containing the abovementioned scales was anonymous and self-administered. The process to complete it took approximately 20 min. The people in charge of each NGO or of the diverse health professionals (pharmacists, doctors, and nurses) in the participating hospitals gave the appropriate instructions before administering the questionnaire, obtained participants’ informed consent, and stayed with the participants, while they completed the questionnaires in order to address any doubts that might arise. Data analysis Firstly, exploratory analysis was performed to detect missing, atypical, or extreme data, as well as to ensure that the statistical assumptions of multivariate analysis techniques were met. The means of missing data from incomplete cases for each scale were .03, .001, and .000009 (for the Perceived Stigma Scale, Group Identification Scale, and Quality of Life Scale, respectively). In each of these scales, the missing values did not exceed 1 % for most of the items. No imputation was performed for these missing values. In the analyses, litwise deletion was used, a method that discards the units with incomplete information. The effective sample can be observed in the fit indexes reported in the diverse analyses. Mediation analysis was done in three steps [33]. The first step was to show that the criterion—quality of life—could be predicted by the antecedents (enacted and internalized stigma). The second step was to show that the mediators—ingroup affect and in-group ties—could be predicted by the antecedents—enacted and internalized stigma. Finally, we tested to determine whether the effects of the antecedents were greatly reduced (partial mediation) or nonexistent (full

Qual Life Res

Fig. 1 Model estimates. Standardized solution. Note: The asterisks indicate significant path coefficients

mediation) when the mediators are included. For this purpose, we carried out structural equation modeling (SEM), using the LISREL 8.7 program. Although mediation analyses can be done with hierarchical regression, SEM has the advantages of being able to model measurement errors, to simultaneously obtain estimates of all the paths in the model and to provide statistics to evaluate the model-data fit [34]. Although SEM permits evaluating mediational effects simultaneously, in order to make the exposition clearer, we have followed the three-step procedure described above to interpret the change in the magnitude of the direct effects of antecedents on quality-of-life parameters when including the effects of the mediating variables.

Results The descriptive statistics of the variables subsequently used in the model, as well as the correlations among the variables, are shown in Table 2. Model testing As we had previously obtained the latent variables through CFA, for the sake of clarity, the theoretical model was analyzed using Path Analysis. The variables employed summarized the information of the items corresponding to each scale, which are described in the Measures section. The results of the estimated model showed a good fit to the data and explained 21 % of the variance of quality of life, v2(1, N = 557) = .32, p = .057, GFI = 1, AGFI = .1, RMSEA = .00, 90 % CI [.00, .094], CFI = 1. Figure 1 shows the parameters estimated. Mediation analysis The first step was to show that the relations between the exogenous independent variables—enacted and internalized

Fig. 2 a Model from step 1 of mediation analysis. b Model from step 2 of mediation analysis. Note: Dotted lines represent path coefficients constrained to 0, and asterisks indicate significant path coefficients

stigma—and the criterion—quality of life—were significant. For this purpose, we constrained all indirect paths in the model to 0 (all b and c except for c11 and c12). Figure 2a shows the direct paths from enacted and internalized stigma to quality of life. Both paths were significant and negative. However, the negative effect of enacted stigma on quality of life was higher than that of internalized stigma. In the second step, we showed that the mediators (the two dimensions of group identification) could be predicted by the independent variables (the two dimensions of stigma). For this purpose, we allowed enacted and internalized stigma to predict the two dimensions of group identity (c21, c31, c22, c32), while the rest of the paths were constrained to 0. As shown in Fig. 2b, enacted stigma significantly and positively predicted one of the two dimensions of group identity—in-group ties—and internalized stigma significantly and negatively predicted both dimensions—in-group affect and in-group ties. The path from enacted stigma to in-group affect was nonsignificant. The third step was to determine whether the mediators— the dimensions of group identity—predicted the criterion— quality of life—and whether the direct path coefficients from the antecedents—enacted and internalized stigma—to the criterion significantly decreased (for partial mediation) or vanished completely (for complete mediation). In this model, we allowed all parameters to vary, like those shown in Fig. 1. As can be seen in Fig. 1, the direct path from

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Fig. 3 Final model. Standardized solution

enacted stigma to quality of life (c11) was not reduced. This suggests that the identity dimensions did not mediate this relationship. The Sobel test was not statistically different from cero (Sobel test = -1.69, p = .09). However, after the indirect paths (b12, b13) were allowed to vary, the direct path coefficient from internalized stigma to quality of life (c12) was no longer significant. This suggests that the relationship between internalized stigma and quality of life was totally mediated. The mediation occurred mainly through the dimension of in-group affect because it was the only one that showed a significant relationship with quality of life. In addition, this was the only statistically significant Sobel test (Sobel test = -5.8, p = .000). As an additional test, firstly, when the direct path from enacted stigma to quality of life was constrained to 0, the Dv2 difference test showed that the decrease in model fit was significant, Dv2(1, N = 557) = 31.16, p \ .001. Secondly, when the direct path from internalized stigma to quality of life was constrained to 0, the change in the model fit was nonsignificant, Dv2(1, N = 557) = 1.63, p = .20. Thus, the conclusion that group identity mediated the effect of internalized stigma in quality of life, but this mediation did not occur between enacted stigma and quality of life is further supported. For the sake of clarity, Fig. 3 shows the final model only with significant coefficients. Comparing activist and non-activist participants In order to analyze the invariance of the model, we first compared its fit in the two studied groups—activists (members of an NGO) and non-activists (not members of an NGO). For activists, we obtained v2(1, N = 171) = .12, p = .72, GFI = 1, AGFI = 1, RMSEA = .00, 90 % CI [.00, .14] and CFI = 1, which indicates a good fit of the model. In contrast, for non-activists, we found v2(1, N = 379) = 7.1, p = .13, GFI = 1, AGFI = .96, RMSEA = .057, 90 % CI [.00, .14] and CFI = 1, indicating an acceptable fit. The standardized solution of both groups can be seen in Fig. 4. Next, multigroup SEM was conducted to evaluate model invariance. For this purpose, firstly, the parameters of both groups were estimated simultaneously. Results showed a good model-data fit, v2(2, N = 557) = 2.33, p = .31,

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Fig. 4 Model estimates in activist and non-activist participants. Standardized Solution. Note: Activists are on right side of the bar, and non-activists are on the left side. Asterisks indicate significant path coefficients

GFI = 1, RMSEA = .025, 90 % CI [.00, .13], CFI = 1. Then, the unstandardized gamma path coefficients (relations between the independent exogenous and the endogenous variables) were constrained to be equal. The decrease in the model fit was nonsignificant, Dv2 (6, N = 557) = 3.88, p = .69. Next, the unstandardized beta path coefficients (relations between the endogenous variables) were constrained to be equal. The decrease in the model fit was marginal, Dv2(2, N = 557) = 5.24, p = .07. Therefore, we examined each parameter separately, releasing their constraints one by one. We found that when we constrained the path from in-group affect to quality of life, the decrease in the model fit was nonsignificant, Dv2(1, N = 557) = .04, p = 1. On the contrary, when we constrained the path from in-group ties to quality of life, the decrease in the model fit was significant, Dv2 (1, N = 557) = 5.19, p = .02. When examining the coefficients, we found that, in the group of activists, the relation between in-group ties and quality of life was positive and significant (b = .16), whereas in the group of non-activists, it was not (b = -.03). In the case of the activists, this difference leads enacted stigma to have positive effects on quality of life through this dimension (.20 9 .16 = .032), whereas internalized stigma produced negative effects (-.24 9 .16 = -.038). However, the mediator pattern of both stigmas remained the same in the model considered in the global sample.

Discussion The main goal of the present investigation was to examine the mediating role of group identity in predicting the effects of stigma on quality of life. In addition, this study investigated as independent variables two important sources of stigma—enacted stigma and internalized stigma. According to the literature [5–9, 28, 35–37], the results

Qual Life Res

showed that both enacted stigma and internalized stigma had a negative influence on the quality of life of people with HIV. However, this influence occurred in different ways. Enacted stigma, which includes the actual experience of prejudice, discrimination, and exclusion described by stigmatized people, had a direct negative influence on quality of life. The results showed that no dimension of group identity protected people with HIV from the negative influence of enacted stigma. In contrast, the negative influence of internalized stigma on quality of life was totally mediated by some dimensions of group identification, mainly through in-group affect. In other words, people with HIV with higher levels of internalized stigma developed negative affect for belonging to their group and this determines a poorer quality of life. Studies with other stigmatized groups showed that ingroup identification may be positive in some cases for individuals’ well-being. This occurs, for instance, in the case of African Americans [18], Latin American immigrants in the United States [38], women [39], and older adults [40]. Our results were not consistent with these findings. One possible explanation lies in the different operationalization of the variables stigma and social identity. However, beyond methodological issues, we think that the meaning of social identity is very different for each group according to the kind of stigma. In some cases (immigrants, women), the identity of the devalued groups may have positive aspects in the eyes of their members (i.e., sharing a culture or a religion), but this is more complicated when the social identity is built around a disease with very negative connotations, as in the case of HIV. Our results do not deny the positive effects of group identity found in previous research; they simply underline that it is not easy to identify with a highly stigmatized group, as in the case of people with HIV or people with a mental illness [41], and when the social identity is very negative, it does not protect from the negative effects of the stigma. The present investigation fills important gaps in the literature. Firstly, it reveals both the utility of differentiating between enacted stigma and internalized stigma and of adopting a multidimensional conception of social identity. This is because the effects of both stigmas on quality of life were different and because the role of the different dimensions of group identity was also different. Secondly, the results found show the utility of studying the collective heterogeneity of people with HIV. In this study, it was shown that, in contrast with non-activists, in-group ties positively affected the quality of life of those people who were members of NGOs (activists). This contributed to a differential impact of the stigma on their quality of life. It appears that belonging to a group with specific goals (to achieve social changes favoring the in-group) increases the ties with the other group members as well as the sense of belongingness. This leads to overcoming the negative

effects of identification through disease (having HIV) and benefitting from the positive effects of social identity observed in other groups with less stigmatization. The indirect positive influence of group identification on the well-being of people with HIV by means of collective action has been reported in other studies [26]. Enacted stigma had a higher negative impact on the quality of life of people with HIV, and group identification did not protect it. Internalized stigma had a higher negative impact on group identity and mediated its negative effect on quality of life. These findings have relevant implications for practice. It showed that interventions aimed at developing a more positive in-group affect could improve the quality of life of people with HIV by alleviating the negative effect of internalized stigma. Of course, parallel interventions must be carried out to reduce or eliminate enacted stigma toward people with HIV. Limitations and proposals for improvement This investigation has some limitations. One of these is related to the low reliability obtained in the dimension of cognitive centrality of identity. It was therefore decided to discard this dimension in the structural model. However, this dimension of identity could be relevant to better understand the implications of identity in a highly stigmatized group, like people with HIV. In future studies, it is recommended that a more precise measure of cognitive centrality be used and that its relation with quality of life be analyzed. Also, given that no validation studies of the structural model were carried out in this investigation, future research should perform these studies. Acknowledgments Work on this paper was supported by a Spanish Science and Innovation Ministry Grant (Number PSI2008-02966). This study was supported by Fundacion para la Investigacio´n y la Prevencio´n del Sida en Espan˜a (FIPSE: 24637/07). Conflict of interest

None to be declared.

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