Personal and Perceived Depression Stigma in Individuals Affected by Depression and Relatives: Results of a Survey among Attendees of a German Depression Congress

Research Article

Ann Depress Anxiety. 2021; 8(1): 1106.

Personal and Perceived Depression Stigma in Individuals Affected by Depression and Relatives: Results of a Survey among Attendees of a German Depression Congress

Heinz I1#, Mergl R2*#, Allgaier A-K2, Hegerl U3 and Rummel-Kluge C1

¹Department of Psychiatry and Psychotherapy, Medical Faculty, University of Leipzig, Germany

²Institute of Psychology, Universität der Bundeswehr München, Germany

³Department of Psychiatry, Psychosomatic Medicine and Psychotherapy, University Hospital Frankfurt, Germany

#This Author Equally Contributed to this Manuscript

Corresponding author: Mergl R, Institute of Psychology, Universität der Bundeswehr München, Werner-Heisenberg-Weg 39, D-85577 Neubiberg, Germany

Received: July 28, 2021; Accepted: August 11, 2021; Published: August 18, 2021

Abstract

Background: Depression stigma is a clinically relevant factor negatively affecting the help-seeking process and depression care. Relatives of individuals suffering from depression play an important role in service utilization and in depression treatment, but little is known about their depression stigma compared to the stigma of individuals affected.

Aims: We investigated whether individuals with depression, relatives and individuals being both - affected and relative - differ in depression stigma.

Methods: Paper-pencil questionnaire data of 216 study participants from a German depression congress in 2017 were analyzed using Kruskal-Wallis tests to investigate subgroup differences and Mann-Whitney-U tests for post-hoc comparisons. Ordinal logistic generalized regression models with the dependent variables being the stigma sum scores and the independent variables “group”, “gender” and “age” were computed.

Results: Participants being a relative of an individual with depression, being affected by depression or being both - relative and affected - reported comparable personal and perceived depression stigma. There was a statistical trend for group differences in personal stigma in the total sample, due to significantly lower personal stigma in male participants being affected by depression compared to male participants having a family member affected.

Conclusions: Relatives of individuals with depression appear to have similar stigmatizing attitudes as affected individuals themselves. Potential differences in personal stigma in male relatives compared to male patients require further research, since they have implications for anti-stigma activities as well as for depression care.

Keywords: Depression; Stigma; Attitudes; Relatives; Family members

Abbreviations

B: participants with depression and being relative; D: participants with depression; DSS: Depression Stigma Scale; DSS-perceived: Depression Stigma Scale-sum score for perceived depression stigma; DSS-personal: Depression Stigma Scale-sum score for personal depression stigma; DSS-total: Depression Stigma Scale-sum score for personal and perceived depression stigma; M: (arithmetical) means; N: sample size; n: subgroup size; R: participants being relatives of individuals with depression; SD: Standard Deviation; WHO: World Health Organization

Introduction

Mental health stigma has an impact on psychological, physiological and economic outcomes of individuals affected [1- 4]. Stigma is one of the major barriers to recognize a mental health problem, to seek professional help and to receive adequate treatment [5-13]. The most established definition of stigma is Goffman’s [14] describing stigma as an “attribute that is deeply discrediting” (p. 3) and linked to stereotypes, that devalues an individual. Common attributes for individuals with depression are being “unpredictable”, “dangerous” [15,16], “weak” and not motivated to overcome the depression-attributes that reflect pretty much the opposite of what our society considers as the norm [17].

In addition to Goffman, other concepts of stigma have been developed and different types of stigma are described in the literature. Corrigan for example distinguishes between public stigma referring to the broad public´s attitudes towards a stigmatized person and self- or internalized stigma, which describes the internalized public stigma by an individual of the stigmatized group [18]. Griffiths and colleagues differentiate between personal stigma, an individual’s personal believes about depression (e.g. ‘Depression is not a real medical illness’) and perceived stigma (e.g. ‘Most people believe that depression is not a real medical illness’) [19]. Perceived stigma is related to public stigma but reflects how much an individual perceives public attitudes towards depression.

A validated and widely used instrument to measure personal and perceived depression stigma is the Depression Stigma Scale (DSS), developed by Griffiths [19]. Numerous studies have shown that when measured with the DSS, scores for perceived stigma are higher than those for personal stigma [11,20-22]. Furthermore, personal and perceived stigma scores vary between different groups depending on e.g. gender, age, personal history of depression as well as the level of contact to individuals with depression (e.g. having a family member affected) [1,6,11,20,23-25]. The stigma of relatives of individuals suffering from depression is of great interest, since relatives can impact on how patients deal with their illness, for instance they can refer them to seek professional help [26] or be opposed to it [27]. Moreover, it is often the family members who communicate with mental health professionals. As key persons especially when giving care to affected individuals, they understand the patient the most and thus can support mental health professionals in treating depression [28], e.g. in supporting pharmacological treatment adherence [29]. A family member´s stigma may therefore impede a patient´s recovery.

Previous studies adressing stigma in relatives or family members of individuals with depression mainly compared their personal and perceived stigma to that hold by members of the general population. For perceived stigma, higher scores have been found in both relatives of individuals suffering from depression as well as in affected individuals themselves as compared to the general public [1,20,21,23,25]. Experiencing more stigmatizing events and a greater sensitivity to those events are among the factors discussed for this association in depressed individuals. Likewise, the personal contact to an affected person e.g. within the family appears to be associated with a greater exposure to stigmatizing events, too [21]. Regarding personal stigma, findings are somewhat inconsistent. Some researchers revealed lower personal stigma scores for individuals with depression as well as for relatives of individuals with depression compared to the general public [6,11,20,23,24] arguing that experiencing the disorder first hand or by a family member increases the understanding of the condition and the respective tolerance [20] or may be associated with an increased knowledge about depression or both [11]. Other studies did not reveal differences in personal stigma (assessed with the DSS) between patients, relatives, and the broad public [15,21]. However, only a few studies compared depression stigma between individuals with depression and relatives of individuals with depression revealing comparable personal and perceived stigma scores for both groups [21]. This comparison is of at least as much importance as the comparison of these groups with general population samples, because of the closer relationship of a relative to a depressed individual and the relative´s involvement in depression care. Based on findings from a former study with a similar sample [21], the aim of this study was to investigate whether three groups of attendees of a German depression congress (participants with depression, participants being a relative of an individual with depression and participants being both affected and relative) significantly differ in personal and perceived depression stigma. Further we investigated if potential effects are moderated by relevant covariates such as age and gender, since covariates were not investigated so far, and that information might be important to tailor group-specific interventions to address stigma. We hypothesized according to [21] that participants with depression, participants being a relative of an individual with depression and participants being both affected and relative do not differ in personal and perceived stigma. Further, it was examined in an explorative way whether potential differences in personal or perceived stigma between these three subgroups were moderated by age and gender.

Materials and Methods

Sample

The study is based on data from a German sample, i.e. attendees of the German Depression Congress in Leipzig, Germany in the year 2017. Attendees came from all over Germany and were mainly affected by depression themselves and/or relatives of individuals with depression. The remaining participants were primarily interested in the topic neither being affected nor having an affected family member. All attendees had been asked to complete a paper-pencil questionnaire on site for evaluation purposes. The survey received a positive vote of the ethical committee of the Medical Faculty at the University of Leipzig, Germany (Reference number: 205/13-ek) and was conducted according to the principles of the Declaration of Helsinki. All participants gave written informed consent prior to the survey.

Instrument

Participants filled in the standardized Depression Stigma Scale (DSS) [19,22,23] containing two sub-scales with 9 items each to assess personal depression stigma (DSS-personal) and perceived depression stigma (DSS-perceived) on a five-point Likert scale ranging from ‚strongly disagree’ (0) to ‘strongly agree’ (4). Higher sum scores on each scale (range 0-36) and in total indicate more stigmatizing attitudes towards depression. The questionnaire was presented in a German version. Forward translation as well as back-translation of the original English version by Griffiths [19] were performed following the guidelines published by the World Health Organization (WHO) [30]. The DSS demonstrated sufficient to good internal consistency for the two subscales and high test-retest reliability for the DSS as a whole [8,19,23]. Participants further provided sociodemographic information on age, gender, educational level, and status (individual with depression, relative of an individual with depression, individual being both affected and relative, individual being neither affected nor relative). We intentionally kept the survey short and did not, for example, use questionnaires assessing symptoms of depression so as not to give the impression that research was the primary concern at the event.

Statistical analysis

In order to test subgroup differences (defined by “status”) in DSSpersonal and DSS-perceived a Kruskal-Wallis test was performed. By using the Mann-Whitney-U-Test, differences between two groups of participants (e.g., participants with depression versus relatives of an individual with depression) regarding DSS-personal and DSSperceived stigma were tested for statistical significance. These tests were not only conducted for the total sample but also for subgroups stratified by gender and age group. Moreover, we selected ordinal logistic generalized regression models with the dependent variables being DSS-personal and DSS-perceived and the independent variables “status” (three categories: 1: participant with depression, 2: participant being relative of an individual with depression, 3: participant being both affected and relative; reference category: 3), “gender” (two categories: 1: female, 2: male; reference category: 2) and “age group” (based on the terciles of the age distribution in the final sample leading to three categories: 1: not exceeding 39 years, 2: 40 to 54 years, and 3: at least 55 years; reference category: 3) in order to be able to separate effects of the factor “status” from effects of other variables with a potential influence on DSS-personal and DSSperceived. This model was chosen rather than a general linear model since DSS items were rank scaled. Further, two-fold interactions of the factor “status” and the two factors “gender” and “age group” had been analyzed to identify potential moderators of status effects on depression stigma. The level of significance was defined as a = 0.05. Only in the case of post-hoc group comparisons an alpha-adjustment according to the Bonferroni correction was applied. All statistical tests were two-sided. Effect sizes were interpreted according to Cohen [31].

Results

Sample characteristics

Out of N=271 participants who gave their written informed consent, 249 (91.9%) filled in the questionnaires. Due to missing data regarding age and in DSS items or inconsistent data regarding sex, 23 (8.49%) participants were excluded. From the remaining 226 participants (83.39%), only ten (4.4%) were neither affected by depression nor relative of an affected individual. With regard to the low statistical power, this subgroup was excluded. Thus, the final sample consisted of 216 participants; characteristics are summarized in Table 1.