Skip to main content
NCBI home page
NIHPA Author Manuscripts logoLink to NIHPA Author Manuscripts
. Author manuscript; available in PMC: 2014 Oct 1.
Published in final edited form as: Psychol Med. 2013 Jan 9;43(10):2191–2202. doi: 10.1017/S003329171200298X

Embarrassment When Illness Strikes A Close Relative: A World Mental Health Survey Consortium Multi-Site Study

Brian K Ahmedani 1,2, Sheryl Pimlott Kubiak 2, Ronald C Kessler 3, Ron de Graaf 4, Jordi Alonso 5, Ronny Bruffaerts 6, Zahari Zarkov 7, Maria Carmen Viana 8, YQ Huang 9, Chiyi Hu 10, Jose A Posada-Villa 11, Jean-Pierre Lepine 12, Matthias C Angermeyer 13, Giovanni de Girolamo 14, Aimee N Karam 15, Maria Elena Medina-Mora 16, Oye Gureje 17, Finola Ferry 18, Rajesh Sagar 19, James C Anthony 20
PMCID: PMC4013530  NIHMSID: NIHMS573394  PMID: 23298443

Abstract

Background

This global study seeks to estimate the degree to which a family member might feel embarrassed when a close relative is suffering from an alcohol, drug, or mental health condition (ADMC) versus a general medical condition (GMC). To date, most studies have considered embarrassment and stigma in society and internalized by the afflicted individual, but have not assessed family embarrassment in a large scale study.

Method

In 16 sites of the World Mental Health Surveys (WMHS), standardized assessments were completed including items on family embarrassment. Site matching was used to constrain local socially shared determinants of stigma-related feelings, enabling a conditional logistic regression model that estimates the embarrassment close relatives may hold in relation to family members affected by an ADMC, GMC, or both conditions.

Results

There was a statistically robust association such that subgroups with an ADMC-affected relative were more likely to feel embarrassed as compared to subgroups with a relative affected by a GMC (p<0.001), even with covariate adjustments for age and sex.

Conclusions

The pattern of evidence from this research is consistent with conceptual models for interventions that target individual- and family-level stigma-related feelings of embarrassment as might be part of the obstacles to effective early intervention and treatment for ADMC conditions. Macro-level interventions are underway, but micro-level interventions also may be required among family members, along with care for each person with an ADMC.

Keywords: Family Embarrassment, Stigma, World Mental Health Surveys, Psychiatric Conditions

Introduction

Alcohol, drug, and mental health conditions (ADMC) have surfaced as major public health challenges of our time (Demyttenaere et al. 2004; World Health Organization [WHO], 2001). In addition, ADMC are considered prominent causes of disability adjusted life years (Buka, 2008; Hugo et al. 2003; World Health Organization [WHO], 2004a). Unfortunately, patients with ADMC often face barriers to care. To illustrate, in the United States, an estimated eight year median lag-time separates depression onset and treatment services entry; for alcohol and other drug disorders, the median is five years (Wang et al. 2005).

Stigma-related feelings about illness are among the barriers, leading World Psychiatric Association leaders to make recommendations for ameliorative interventions (Sartorius et al. 2010). In this context, stigma can be defined broadly ‘to encompass the negative stereotypes and prejudicial beliefs that people may hold, as well as discriminatory or inequitable practices that may result’ (Sartorius et al. 2010). In research on this construct, it has been typical to study self stigma (e.g., patients' feelings about themselves) and social stigma as manifest in a desire to increase ‘social distance’ between self and ADMC (Alonso et al. 2008; Brohan et al. 2010; Brohan et al. 2011; Crocker, 1999; Jorm and Oh, 2009). This study focuses on a unique aspect of social stigma – investigating whether family members are more often embarrassed by their relatives' mental health as compared to general medical conditions.

As background, manifestations of social stigma have been studied at the macro- and micro-level as potential barriers that separate the illness-affected person from prompt access to effective services (Ahmedani et al. 2011; Alonso et al. 2008; Alonso et al. 2009; Cao et al. 2010; U.S.Surgeon General, 1999; World Health Organization [WHO], 2001). Here, individuals with ADMC are regularly perceived as dangerous or violent and are frequently avoided (Crocker, 1999; Dudley, 2000; Goffman, 1963). Apparently, these stigma-related feelings have not changed appreciably over time (Pescosolido et al. 2010), and the mass media sustain negative portrayal of these conditions (Corrigan et al. 2003; Dietrich et al. 2006; Klin and Lemish, 2008; Sayce, 2000). Moreover, in relation to many ADMC conditions, victims often are told that they should be able to ‘pull themselves together’ and to control themselves without help (Corrigan et al. 2000; Corrigan et al. 2001; Crisp et al. 2000). These examples illustrate a variety of ways to conceptualize and measure social stigma – e.g., social distance, dangerousness, and controllability (Ahmedani, 2011).

The ADMC, in particular, seem to evoke stigma-related feelings more often than general medical conditions (GMC), although the evidence base from rigorous research on this topic needs development. For instance, in some research, levels of stigma-related feelings attached to schizophrenia and cocaine addiction have been found to be greater than corresponding levels as attached to the cancers; individuals with more severely stigmatized psychiatric conditions have been believed to be able to control their symptoms more readily, and perceived controllability of the condition may help explain some observed variations (Corrigan et al. 2000).

Despite variation within ADMC, there still remains an overarching issue in societies around the world, such that ADMC are viewed less favorably than GMC. To illustrate, within the US, public support for government health care funding to treat GMC is substantially greater than support for funding of ADMC services (McSween, 2002). Also, public health promotion and prevention campaigns in Australia are more prevalent for GMC (Jorm et al. 2006). The many gaps in the evidence base have elicited recommendations for new international health research agenda that will foster a more complete understanding of variations in stigma attached to illnesses and to psychiatry (Weiss and Ramakrishna, 2006; Sartorius et al. 2010).

In theory, there is another reason to study social stigma as it is manifest within family systems. Application of a social systems perspective, with the individual as a focus, clarifies the family as one of the closest subsystems of society to the individual's system, and this gives the family special leverage in relation to the individual's decisions and behavior (Robbins et al. 2005; Stier and Hinshaw, 2007; Wahl, 1999). More specifically, ADMC, unlike most GMC, may create unique burdens on family members, causing isolation from the community at large, with potential loss of extra-familial support and friendship-related social capital (Lefley, 1989). Once a close relative is affected by an ADMC, family members may themselves feel stigmatized, blamed, and embarrassed (Corrigan et al. 2006; Ostman and Kjellin, 2002). Behavioral manifestations of these stigma-related feelings include concealment of the close relatives' illnesses, and possibly self-blame about the events leading up to the relative suffering from an ADMC (Hinshaw, 2005; Phelan et al. 1998).

One of the most well-studied social stigma constructs is ‘social distance,’ the primary topic in a recent review (Jorm and Oh, 2009). To illustrate, according to estimates from Sweden (Ostman and Kjellin, 2002), 18% of individuals thought that their close relative with an ADMC would be better off dead; it also is noteworthy that 40% believed that they, themselves, had developed an ADMC from their association with their afflicted family member. From Hong Kong, there is evidence that ADMC-associated social stigma as felt by a family member is greater for schizophrenia than for diabetes (Lee et al. 2005). In addition to ‘social distance,’ one of the unifying constructs in the empirical stigma research on familial reactions to ADMC may be ‘embarrassment,’ which we have adopted here, consistent with its application in prior research (Alonso et al. 2008; Alonso et al. 2009; Link and Phelan, 2001; Phelan et al. 1998). Embarrassment was chosen as a measure of stigma for two main reasons: 1) its use extends WMHS research highlighting the extent of personal embarrassment (Alonso et al. 2008; Alonso et al. 2009), and 2) the WMHS protocol measured embarrassment by asking family members about their relatives' health conditions; other social stigma variables were not measured.

In this project, the focus is on the construct of ‘embarrassment’ as a facet of stigma-related feelings that can affect the lives of family members. This research project places illness-associated family embarrassment as a response variable in a conceptual model such that its occurrence is expressed as a function of whether close relatives have been affected by a burdensome ADMC only, by a GMC only, or by both. Instead of asking the family member to attribute the embarrassment to one or another of the close relative's health conditions, we have estimated the strength of association that links these feelings of embarrassment with each group of conditions. Use of a ‘fixed effects’ conditional logistic regression model has made it possible to constrain macro-level influences such as society-wide social stigma, even though the WMHS research protocol had no explicit measurement of these sources of variation in embarrassment felt at the individual level.

Purpose of the Study

The main aim of the current study is to assess ‘family embarrassment’ as a construct of social stigma in representative samples drawn, recruited, and assessed in 16 different sites of the World Mental Health Surveys. Furthermore, this study estimates the degree to which family embarrassment is associated with having one or more close relatives affected by burdensome ADMC only, GMC only, or both, with covariate adjustment for sex and age, while mitigating the influence of socially-shared or macro-level influences on embarrassment via within country matching and conditional logistic regression. We hypothesize that family embarrassment will be greater towards individuals with ADMC as compared with GMC, but will be greatest for the GMC+ADMC group because comorbidity may result in greater embarrassment for the family.

Methods

The World Mental Health Surveys (WMHS) consist of coordinated household surveys with nearly 120,000 participants in 23 sites distributed across world regions, including Africa (Nigeria and South Africa), the Americas (Brazil [São Paulo], Colombia, Mexico, and the United States), Asia (China, Japan [11 Metropolitan areas], India [Pondicherry], Iraq, Israel, and Lebanon), Europe (Belgium, Bulgaria, France, Germany, Ireland, Italy, the Netherlands, Romania, Spain, and Ukraine), and Oceania/South Pacific (New Zealand). The initial protocol consisted of two independent surveys in the People's Republic of China (PRC: Beijing and Shanghai). In this study, 16 sites with complete data on family embarrassment contribute information for the study estimates (combined n=81,144), which includes the combination into one site of samples from both PRC sites, based on a convention established by the WMHS team. Table 1 lists sites contributing data for this research project.

Table 1.

Unweighted sample distributions of burdensome health condition in a close relative, nature of the condition, and family embarrassment, by site. Data from the World Mental Health Surveys.

Site Total sample size, n Respondents with at least one close relative in one of the following mutually exclusive health condition groups: Number of respondents who were asked about embarrassment (% of all respondents) Number of respondents who felt embarrassment (% of those asked embarrassment question)
GMC* only, n(%) ADMC* only, n(%) GMC & ADMC, n(%)
Africa
 Nigeria 6,752 36 (1) 60 (1) 56 (1) 38 (1) 22 (58)
The Americas
 Brazil - São Paulo 5,037 635 (13) 860 (17) 526 (10) 685 (14) 389 (57)
 Colombia 4,426 181 (4) 141 (3) 88 (2) 216 (5) 45 (21)
 Mexico 5,826 279 (5) 238 (4) 165 (3) 261 (5) 93 (36)
 USA 9,836 631 (6) 499 (5) 578 (6) 624 (6) 94 (15)
Asia
 PRC*-Beijing/Shanghai 12,335 785 (6) 211 (2) 121 (1) 678 (6) 115 (17)
 India-Pondicherry 2,992 36 (1) 110 (4) 8 (0.3) 55 (2) 41 (75)
 Lebanon 2,857 169 (6) 25 (1) 45 (2) 100 (4) 26 (26)
Europe
 Belgium 2,419 135 (6) 47 (2) 61 (3) 74 (3) 33 (45)
 Bulgaria 5,318 238 (4) 45 (1) 58 (1) 168 (3) 163 (97)
 France 2,894 147 (5) 85 (3) 64 (2) 123 (4) 97 (79)
 Germany 3,555 253 (7) 56 (2) 67 (2) 106 (3) 17 (16)
 Northern Ireland 4,340 533 (12) 333 (8) 238 (5) 346 (8) 51 (15)
 Italy 4,712 210 (4) 47 (1) 57 (1) 88 (2) 64 (73)
 Netherlands 2,372 399 (17) 174 (7) 191 (8) 205 (9) 26 (13)
 Spain 5,473 203 (4) 94 (2) 57 (1) 163 (3) 19 (12)
All Sites 81,144 4,870 (6) 3,025 (4) 2,378 (3) 3,930 (5) 1,295 (33)
Open in a new tab
*

GMC, general medical condition; ADMC, alcohol, drug, or other mental health condition; PRC, People's Republic of China.

A thorough presentation of the study development and methods has been published elsewhere (Kessler and Ustun, 2004). In brief, after standard field survey sampling and recruitment of consenting adult participants, the assessment plan included administration of standardized modules from the World Mental Health version of the WHO Composite International Diagnostic Interview (CIDI 3.0). These modules were used to assess psychiatric conditions and other variables in a fully structured interview schedule format; an optional module covered aspects of family burden. The sample sizes of participants, shown in Table 1 for the WMHS sites that administered the interview module on family burden, ranged from 2,372 participants in the Netherlands to 12,335 in PRC. The institutional review boards responsible for each site-specific data collection reviewed and approved the field survey protocols.

The survey was administered in two parts, either via face-to-face interviewing by a staff member, or by computer assisted interview, with standardized survey items that had been translated, back-translated, and harmonized to local languages. The English language instrument is available online (http://www.hcp.med.harvard.edu/wmhcidi/index.php). Readers are encouraged to contact administrators for other language versions via information on the website. Part I, which consisted of screening questions and the assessment of demographic information, some psychiatric conditions, and basic health status, was administered to those who agreed to participate; more than 70% of the sample participated (Alonso et al. 2008; Kessler and Ustun, 2004). All participants who reported having a history of psychiatric symptoms, as well as a probability subsample (approximately 25%) of those who did not, were asked to complete Part II. The Part II content varied slightly by site but typically included items that assessed lower prevalence mental disorders and special topics such as family burden, including family embarrassment (Kessler and Ustun, 2004).

Health Conditions

Questions about burdensome health conditions among close relatives were asked in the family burden section of the WMHS interview, Part II (i.e., the subsamples). Figure 1 shows the WMHS branching protocol for this section and how the final analytical sample was derived. First, participants sampled to complete the family burden module were asked a question about the number of close living family members including their spouse/partner, parents, children, and brothers and sisters. When participants acknowledged having one or more family members, they were directed to health condition questions of the following form and a list of conditions: “Do any of your close family members have any of the following health conditions?” (World Health Organization [WHO], 2004b). The list included: 1) cancer, 2) heart problems, 3) serious memory problems, 4) mental retardation, 5) permanent physical disabilities such as blindness or paralysis, 6) other chronic physical illnesses, 7) alcohol or drug problems, 8) depression, 9) anxiety, 10) schizophrenia or psychosis, 11) manic-depression, and 12) other serious mental health problems.

Figure 1. Process for identifying individuals who were queried about embarrassment towards close relatives with health conditions in the World Mental Health Surveys.

Figure 1

Open in a new tab

Participants answering “Yes” to any condition were asked a question about ‘family burden.’ The question was: “The next questions are about how your life is affected by the health problems of your [RELATIVE/relative(s)]. Taking into consideration your time, energy, emotions, finances, and daily activities, would you say that (his/her/their) health problems affect your life: a lot, some, a little, or not at all?” Respondents who answered ‘a lot’ or ‘some’ routed into a series of questions, including the family embarrassment item. No other participants were asked about embarrassment.

For clarity, we note that in response to the questions about health conditions affecting their close relatives, participants might say ‘yes’ to all, some, no more than one, or none of the 12 conditions. At least one ‘yes’ answer was required for routing into the family burden items. Based on the observed data, the health conditions were sorted to form two inter-correlated variables 1) GMC (items 1-2 & 5-6), and 2) ADMC (items 3-4 & 7-12). Subgroups of participants were formed by crossing these variables, making it possible to study an ADMC-only subgroup, a GMC-only subgroup, and comorbidity subgroup. Table 1 provides the frequency and proportion of participants whose assessment indicated that a close relative was affected by at least one health condition, stratified by health condition category and by site. We note an ambiguity when both a GMC and an ADMC were mentioned. The comorbidity of GMC and ADMC is observed within the family, not necessarily within a single close relative. That is, one of the relatives might have been affected by a burdensome GMC, with a different close relative affected by a burdensome ADMC. Alternately, the participant might be mentioning a single individual, with burden from two comorbid individual conditions.

Family Embarrassment

Once a participant acknowledged 1) having at least one family member with at least one listed health condition and 2) feeling burdened by the condition(s), each was asked, “How much do (his/her/their) health problems cause you embarrassment?” (World Health Organization [WHO], 2004b). The possible response options for this question were ‘a lot’, ‘some’, ‘a little’, and ‘not at all.’ Answers of ‘a lot’, ‘some’, or ‘a little’ were considered as family embarrassment. The item was collapsed into a binary format, so as to harness the conditional logistic regression matching approach and to estimate ‘any degree’ of embarrassment versus no embarrassment. Table 1 includes a sample description of participants, stratified by site.

Analyses

All WMHS sites with equivalent question structure and usable data for ‘embarrassment’ and ‘health condition’ contributed data, as shown in Figure 1. Participants were grouped by site, and the individual-level analysis plan was carried out with site-level matching. The main analysis involved a conditional form of multiple logistic regression, with the log odds of burdensome family embarrassment expressed as a function of ADMC, GMC, age and sex. Small sample sizes within some sites imposed constraints on more detailed modeling. By conditioning on each site, we take into account the fact that each WMHS site conducted autonomous field research operations according to the common protocol. The substantive implication is that participants at one site who feel embarrassed are compared to participants who do not feel embarrassed at that same site. The regression models yield slope estimates on the natural log scale. We have exponentiated these estimates and the text describes the patterns of association in the form of the resulting odds ratio estimates. Post-estimation analyses included probes into several assumptions, including the possibility that variation in the odds of embarrassment might be driven by variation in the participants' assessments of being burdened by the health conditions of family members. In addition, due to the fact that analysis of site-matched individual-level data does not permit explicit weighting for sample selection probabilities (SSP) or post-stratification adjustment factors (PSAF), the post-estimation analyses included a stratification approach. The main analysis was repeated for each of 10 strata, formed by taking deciles of the SSP-PSAF analysis weight distribution. We also compared the conditional model results with estimates from a weighted unconditional logistic regression model with area of residence held constant via dummy-coded indicator covariates, and variance estimation for complex samples. Essentially the same point estimates were obtained, and the conditional model yielded slightly smaller variance estimates and narrower confidence intervals, in contrast with what others have sometimes found in the form of noteworthy differences with respect to both point estimates and variances, with the possibility of differences in inference (Brumback et al. 2012). The unconditional model estimates are available upon request. The study estimates, 95% confidence intervals, and p-values are presented for the main analyses.

Results

Table 1 shows the proportion of participants whose data indicate having a family member with one or more burdensome health conditions, as well as individuals who felt embarrassed, stratified by site. Overall, 6% of participants had a family member with a burdensome GMC (n=4,870) and 3.7% had a family member with a burdensome ADMC (n=3,025). Slightly fewer (2.9%) described the comorbidity situation (n=2,378). Site-specific variations in these ‘GMC only,’ ‘ADMC only,’ and ‘GMC+ADMC’ proportions, based on weighted survey data, are being reported in other publications by the WMHS stigma work group, thus, the weighted estimates are not reported here (Alonso et al. 2008; Alonso et al. 2009). In total, ∼33% of participants (n=1,295), who were asked about embarrassment (n=3,930), felt at least ‘a little’ embarrassed about a relative's condition. This equated to 11.7% (n=460) who were embarrassed ‘A lot’, 11.7% (n=458) ‘Some’, and 9.6% (n=377) ‘A little.’ Furthermore, 24.9% (n=527 of 2,113) of participants with relatives who had GMC only felt embarrassed, as compared to 49.5% (n=397 of 802) in the ADMC only group, and 36.6% (n=371 of 1,015) in the GMC+ADMC group.

Table 2 presents estimates from conditional logistic regression analyses with covariate adjustment for age and sex, and with site-level matching. Here, the reference is family embarrassment in relation to relatives with GMC only. The subgroup of participants in families with ADMC only were more often embarrassed by the condition (exponentiated slope estimate yields odds ratio, OR = 3.7; p<0.01). This also was found for those in families where both ADMC and GMC were present (OR = 2.2; p<0.01). In a comparison, the ‘ADMC only’ subgroup was more likely to feel embarrassment than the ‘ADMC+GMC’ subgroup, even with covariate adjustment for age and sex (OR = 1.7; p<0.01), although neither age nor sex were associated with family embarrassment.

Table 2.

Estimated association linking type of family health condition with occurrence of family embarrassment, based on conditional form of multiple logistic regression. Data from the World Mental Health Surveys.

Coefficient** SE p-value 95% CI
Family situation*:
 GMC only (reference subgroup) - - - -
 ADMC condition only subgroup 1.30 0.10 <0.001 1.1, 1.5
 GMC and ADMC subgroup 0.79 0.11 <0.001 0.6, 1.0
Open in a new tab
*

GMC, general medical condition; ADMC, alcohol, drug, or other mental health condition.

**

Estimated slope coefficient from the regression model. Exponentiated, this estimate is interpretable as an odds ratio. Exp(1.3) = 3.7 ; Exp(0.79) = 2.2 , as explained in the text.

To probe into the unexpected result that comorbid GMC and ADMC was associated with lower odds of family embarrassment, we conducted a post-estimation exploration of the possibility that family burden might be occurring more frequently in the ‘ADMC only’ subgroup. As displayed in Table 3, the subgroup with both GMC and ADMC in the family has greater odds of describing family burden, as compared to the ‘GMC only’ subgroup (OR = 2.0; Table 3); the contrast with the ‘ADMC only’ subgroup also is noteworthy. The estimated odds of family burden for the ‘ADMC only’ subgroup is not appreciably different from the ‘GMC only’ subgroup (OR = 1.07; p = 0.168), indicating that the ‘ADMC only’ subgroup members are more likely to feel embarrassed but not to have greater family burden.

Table 3.

Estimated association linking type of family health condition with occurrence of family burden, based on conditional form of multiple logistic regression. Data from the World Mental Health Surveys.

Coefficient** SE p-value 95% CI
Family situation:*
 GMC only (reference subgroup) - - - -
 ADMC only subgroup 0.07 0.05 0.168 -0.03, 0.2
 GMC and ADMC subgroup 0.67 0.06 <0.001 0.6, 0.8
Age -0.009 0.001 <0.001 -0.01, -0.006
Sex (ref. = female) -0.17 0.04 <0.001 -0.2, -0.1
Open in a new tab
*

GMC, general medical condition; ADMC, alcohol, drug, or other mental health condition.

**

Estimated slope coefficient from the regression model. Exponentiated, this estimate is interpretable as an odds ratio. Exp(0.07) = 1.07 ; Exp(0.67) = 1.95 , as explained in the text.

In post-estimation analyses with respect to sampling weights, we found no appreciable variation in the estimates across weight variable deciles with one possible exception (Figures 2 and 3). The exception involved the 8th decile (Figure 3), where the estimated association for the ‘GMC+ADMC’ subgroup was modestly larger than the value reported in Table 2. The original full sample coefficient was 0.79, whereas the 8th decile subsample estimate was 2.8. As noted in the methods section, the unconditional logistic regression approach with weights and variance estimation for complex samples yielded consistent estimates with no meaningful change in conclusions.

Figure 2. Weight Variable Deciles for Observed ADMC-only Association in Table 2.

Figure 2

Open in a new tab

Figure 3. Weight Variable Deciles for Observed ADMC+GMC Association in Table 2.

Figure 3

Open in a new tab

Discussion

The main finding of this study is greater occurrence of family embarrassment when a close relative is affected by a burdensome ADMC as compared to a GMC. One novel aspect of this finding is that local site matching was used to constrain socially shared influences on feelings of embarrassment, which vary from country to country. In consequence, the resulting estimates pertain to the occurrence of family embarrassment as it is experienced at the subgroup and individual level within each site. With the between-site macro-level influences held constant, the subgroup with both ADMC and GMC was more likely than the ‘ADMC only’ and ‘GMC only’ subgroups to describe burden of illness; even so, the ‘ADMC only’ subgroup was more likely to feel embarrassed, suggesting that embarrassment is not strictly a function of the associated burden felt by the family member.

Before more detailed discussion, several limitations deserve attention. First, the WMHS project did not include stigma research as a primary aim. Hence, this study sheds light on the ‘family embarrassment’ facet, but not other stigma constructs. In addition, some stigmatized GMC (e.g., epilepsy) were not mentioned in the WMHS items. Further, the placement of the stigma questions in Part II, with constrained sub-sample sizes, has limited the modeling of potential explanations for observed variations, including variations in the occurrence of family embarrassment from site to site. Noting that translation/back-translation may not provide complete measurement equivalence results (Shrout et al. 2008), we must speculate that variations in language, understanding, and perhaps perceived burden or severity of the ADMC or GMC conditions under study might help account for the observed site-to-site variations, but the WMHS project was designed to document but not to explain such differences.

Second, we turned to the conditional form of logistic regression with site-matching in order to derive estimates in a fashion that constrains socially shared sources of variation site-by-site, akin to what is done in behavioral genetics and other family research, but this ‘fixed effects’ approach does not permit use of analysis weights. A counter-balanced strength is that essentially the same conclusions were derived during post-estimation exploratory analyses, including a post hoc use of the unconditional logistic regression model with sampling weights and variance estimation for complex sample data as described elsewhere (Heeringa et al., 2010).

Finally, we had hoped to study stigma variation across individual ADMC, but the Part II sample size constraints thwarted this aim. In this regard, the driving influence was the number of survey respondents who were drawn into the sample for the Part II modules, a number that proved to be too small for our pre-planned analyses and too small for individual country estimates. Here, again, in future research focused more on stigma it should be possible to achieve disorder-level specificity in the estimated associations with odds of family embarrassment and social distance.

Implications

Notwithstanding these limitations, the evidence from this study is generally consistent with observations from other single site research. In a departure from typical stigma research, we did not ask the participants to tell us whether they are embarrassed by ADMC in specific. Instead, we asked whether burdensome health conditions might have affected a close family member, and separately, we asked whether there might have feelings of embarrassment. We then estimated the degree of association between the odds of feeling embarrassed and the nature of the health condition, without requiring the participants to tell us whether it was the ADMC that caused them to feel embarrassed. With this approach, we avoided problems faced when participants are required to have insight into the specific causes of their feelings. The result is stronger evidence that stigma-laden feelings such as family embarrassment are more often occurring when a close relative has one of the ADMC. The demonstrably greater occurrence of family embarrassment in association with ADMC as compared to GMC highlights the importance of the ongoing work of the World Psychiatric Association and others who are trying to reduce stigma attached to psychiatry and psychiatrists (Sartorius et al. 2010). There is some evidence of increasing levels of stigma in this context, despite a greater understanding of mental illness in many societies (Phelan and Link, 1998).

Targeted anti-stigma campaigns represent an important part of within-country and global initiatives (Corrigan et al. 2001; Evans-Lacko et al. 2011; Thornicroft et al. 2008). These campaigns, including the network of the World Psychiatric Association, have centered on groups such as medical personnel, police, and journalists (Thornicroft et al. 2008). Nonetheless, targeted campaigns may not be enough on their own unless paired with other systematic changes (Pinfold et al. 2003).

The findings provoke ideas about anti-stigma campaigns that have focus on family members, perhaps mounted in complement with other targeted campaigns. Family focused initiatives may reduce family subsystem level barriers to care, perhaps by changing the attitudes and beliefs of the family, who are often an afflicted individual's closest support network. As noted, practitioners need to pay more attention to family members' experiences of discrimination and stigma (Thornicroft et al. 2008). In theory, via strengthening of individual's support system (i.e., the family), the individual patient may be more likely to become engaged in a treatment process that yields success, with a shift of disorder severity toward milder forms and away from more severe forms associated with delayed care. Similarly, afflicted individuals with relatives who are less embarrassed may be less fearful of seeking treatment. Of course, there is no need to start design of family focused anti-stigma campaigns from scratch. There already are promising interventions (Adeponle et al. 2009; Copello et al. 2005; Glynn et al. 2006).

Conclusions

Using an approach that has constrained the influence of between-site macro-level differences, and without requiring participants to know and to state the specific causes of embarrassment, we find that family embarrassment is quite tangibly manifest in association with burdensome ADMC. Family embarrassment may lead to the concealment of an individual's condition and impose barriers to care, unnecessarily lengthening the duration of the condition, and thereby increasing the population prevalence, and possibly yielding more serious consequences due to treatment delay. We have described several novel features of this research, including its focused look at subgroups and individuals within countries. The resulting evidence is good reason to strengthen family focused anti-stigma initiatives, in addition to national-scale anti-stigma campaigns.

Acknowledgments

The author wishes to acknowledge Drs. Cliff Broman and Rena Harold for their reviews, comments, and feedback which improved the final paper; John Troost's assistance with forest plots; and the many WMHS-affiliated principal investigators and researchers whose hard work produced the survey data. The World Health Organization World Mental Health Survey (WMHS) Initiative was funded and supported in several ways: NIH grants R01MH070884, R13MH066849, R01MH069864, R01DA016558, R01MH059575, U01MH60220, RO1MH61905, R01DA016558 (JCA), T32DA021129 (BA, JCA), and K05DA015799 (JCA). Additional funding was from the John D. and Catherine T. MacArthur Foundation, the Pfizer Foundation, the Fogarty International Center (FIRCA R01-TW006481), the Pan American Health Organization, the Eli Lilly & Company Foundation, Ortho-McNeil Pharmaceutical, Inc., GlaxoSmithKline, Bristol-Myers Squibb, Ministry of Social Protection in Colombia, the European Commission (Contracts QLG5-1999-01042; SANCO 2004123), the Piedmont Region (Italy), Fondo de Investigación Sanitaria, Instituto de Salud Carlos III, Spain (FIS 00/0028), Ministerio de Ciencia y Tecnología, Spain (SAF 2000-158-CE), Departament de Salut, Generalitat de Catalunya, Spain, Instituto de Salud Carlos III (CIBER CB06/02/0046, RETICS RD06/0011 REM-TAP), the Lebanese Ministry of Public Health, the World Health Organization, Fogarty International, Act for Lebanon, anonymous private donations to IDRAAC, Janssen Cilag, Roche, Novartis, the National Institute of Psychiatry Ramon de la Fuente (INPRFMDIES 4280), the National Council on Science and Technology (CONACyT-G30544-H), and the Pan-American Health Organization, the Federal Ministry of Health in Nigeria, the Substance Abuse and Mental Health Services Administration, the Robert Wood Johnson Foundation (RWJF; Grant 044708), and the John W. Alden Trust. The epidemiology of mental disorders study in India was supported by WHO/DGHS and helped by R . Chandrasekaran, JIPMER. The WMH staff was instrumental in implementing the survey protocol, fieldwork, and data analysis. A list of the WMHS publications can be found at http://www.hcp.med.harvard.edu/wmh/. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the other agencies that provided funding support.

References

  1. Adeponle AB, Thombs BD, Adelekan ML, Kirmayer LJ. Family participation in treatment, post-discharge appointment and medication adherence at a Nigerian psychiatric hospital. Br J Psychiatry. 2009;194:86–87. doi: 10.1192/bjp.bp.108.052217. [DOI] [PMC free article] [PubMed] [Google Scholar]
  2. Ahmedani BK. Mental Health Stigma: Society, Individuals, and the Profession. J Soc Work Values Ethics. 2011;8:41–416. [PMC free article] [PubMed] [Google Scholar]
  3. Ahmedani BK, Kubiak SP, Rios-Bedoya CF, Mickus M, Anthony JC. Willingness to treat drug dependence and depression: comparisons of future health professionals. Subst Abuse Rehabil. 2011;2011:43–51. doi: 10.2147/SAR.S14747. [DOI] [PMC free article] [PubMed] [Google Scholar]
  4. Alonso J, Buron A, Bruffaerts R, He Y, Posada-Villa J, Lepine JP, Angermeyer MC, Levinson D, de GG, Tachimori H, Mneimneh ZN, Medina-Mora ME, Ormel J, Scott KM, Gureje O, Haro JM, Gluzman S, Lee S, Vilagut G, Kessler RC, Von KM. Association of perceived stigma and mood and anxiety disorders: results from the World Mental Health Surveys. Acta Psychiatr Scand. 2008;118:305–314. doi: 10.1111/j.1600-0447.2008.01241.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Alonso J, Buron A, Rojas-Farreras S, de GR, Haro JM, de GG, Bruffaerts R, Kovess V, Matschinger H, Vilagut G. Perceived stigma among individuals with common mental disorders. J Affect Disord. 2009;118:180–186. doi: 10.1016/j.jad.2009.02.006. [DOI] [PubMed] [Google Scholar]
  6. Brohan E, Elgie R, Sartorius N, Thornicroft G. Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: the GAMIAN-Europe study. Schizophr Res. 2010;122:232–238. doi: 10.1016/j.schres.2010.02.1065. [DOI] [PubMed] [Google Scholar]
  7. Brohan E, Gauci D, Sartorius N, Thornicroft G. Self-stigma, empowerment and perceived discrimination among people with bipolar disorder or depression in 13 European countries: the GAMIAN-Europe study. J Affect Disord. 2011;129:56–63. doi: 10.1016/j.jad.2010.09.001. [DOI] [PubMed] [Google Scholar]
  8. Brumback BA, Dailey AB, Zheng HW. Adjusting for confounding by neighborhood using a proportional odds model and complex survey data. Am J Epidemiol. 2012;175:1133–1141. doi: 10.1093/aje/kwr452. [DOI] [PubMed] [Google Scholar]
  9. Buka SL. Psychiatric epidemiology: Reducing the global burden of mental illness. American Journal of Epidemiology. 2008;168:977–979. [Google Scholar]
  10. Cao H, He N, Jiang Q, Yang M, Liu Z, Gao M, Ding P, Chen L, Detels R. Stigma against HIV-infected persons among migrant women living in Shanghai, China. AIDS Educ Prev. 2010;22:445–454. doi: 10.1521/aeap.2010.22.5.445. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Copello AG, Velleman RD, Templeton LJ. Family interventions in the treatment of alcohol and drug problems. Drug Alcohol Rev. 2005;24:369–385. doi: 10.1080/09595230500302356. [DOI] [PubMed] [Google Scholar]
  12. Corrigan P, Markowitz FE, Watson A, Rowan D, Kubiak MA. An attribution model of public discrimination towards persons with mental illness. J Health Soc Behav. 2003;44:162–179. [PubMed] [Google Scholar]
  13. Corrigan PW, River LP, Lundin RK, Penn DL, Uphoff-Wasowski K, Campion J, Mathisen J, Gagnon C, Bergman M, Goldstein H, Kubiak MA. Three strategies for changing attributions about severe mental illness. Schizophr Bull. 2001;27:187–195. doi: 10.1093/oxfordjournals.schbul.a006865. [DOI] [PubMed] [Google Scholar]
  14. Corrigan PW, River LP, Lundin RK, Wasowski KU, Campion J, Mathisen J, Goldstein H, Bergman M, Gagnon C, Kubiak MA. Stigmatizing attributions about mental illness. Journal of Community Psychology. 2000;28:91–102. [Google Scholar]
  15. Corrigan PW, Watson AC, Miller FE. Blame, shame, and contamination: the impact of mental illness and drug dependence stigma on family members. J Fam Psychol. 2006;20:239–246. doi: 10.1037/0893-3200.20.2.239. [DOI] [PubMed] [Google Scholar]
  16. Crisp AH, Gelder MG, Rix S, Meltzer HI, Rowlands OJ. Stigmatisation of people with mental illnesses. Br J Psychiatry. 2000;177:4–7. doi: 10.1192/bjp.177.1.4. [DOI] [PubMed] [Google Scholar]
  17. Crocker J. Social stigma and self-esteem: Situational construction of self-worth. Journal of Experimental Social Psychology. 1999;35:89–107. [Google Scholar]
  18. Demyttenaere K, Bruffaerts R, Posada-Villa J, Gasquet I, Kovess V, Lepine JP, Angermeyer MC, Bernert S, de GG, Morosini P, Polidori G, Kikkawa T, Kawakami N, Ono Y, Takeshima T, Uda H, Karam EG, Fayyad JA, Karam AN, Mneimneh ZN, Medina-Mora ME, Borges G, Lara C, de GR, Ormel J, Gureje O, Shen Y, Huang Y, Zhang M, Alonso J, Haro JM, Vilagut G, Bromet EJ, Gluzman S, Webb C, Kessler RC, Merikangas KR, Anthony JC, Von Korff MR, Wang PS, Brugha TS, guilar-Gaxiola S, Lee S, Heeringa S, Pennell BE, Zaslavsky AM, Ustun TB, Chatterji S. Prevalence, severity, and unmet need for treatment of mental disorders in the World Health Organization World Mental Health Surveys. Journal of the American Medical Association. 2004;291:2581–2590. doi: 10.1001/jama.291.21.2581. [DOI] [PubMed] [Google Scholar]
  19. Dietrich S, Heider D, Matschinger H, Angermeyer MC. Influence of newspaper reporting on adolescents' attitudes toward people with mental illness. Soc Psychiatry Psychiatr Epidemiol. 2006;41:318–322. doi: 10.1007/s00127-005-0026-y. [DOI] [PubMed] [Google Scholar]
  20. Dudley JR. Confronting stigma within the services system. Soc Work. 2000;45:449–455. doi: 10.1093/sw/45.5.449. [DOI] [PubMed] [Google Scholar]
  21. Evans-Lacko S, Brohan E, Mojtabai R, Thornicroft G. Association between public views of mental illness and self-stigma among individuals with mental illness in 14 European countries. Psychol Med. 2011:1–13. doi: 10.1017/S0033291711002558. [DOI] [PubMed] [Google Scholar]
  22. Glynn SM, Cohen AN, Dixon LB, Niv N. The potential impact of the recovery movement on family interventions for schizophrenia: opportunities and obstacles. Schizophr Bull. 2006;32:451–463. doi: 10.1093/schbul/sbj066. [DOI] [PMC free article] [PubMed] [Google Scholar]
  23. Goffman E. Stigma: Notes on the Management of Spoiled Identity. Prentice Hall; Englewood Cliffs, NJ: 1963. [Google Scholar]
  24. Heeringa SG, West BT, Berglund PA. Applied Survey Data Analysis. CRC Press; New York: 2010. [Google Scholar]
  25. Hinshaw SP. The stigmatization of mental illness in children and parents: developmental issues, family concerns, and research needs. J Child Psychol Psychiatry. 2005;46:714–734. doi: 10.1111/j.1469-7610.2005.01456.x. [DOI] [PubMed] [Google Scholar]
  26. Hugo CJ, Boshoff DE, Traut A, Zungu-Dirwayi N, Stein DJ. Community attitudes toward and knowledge of mental illness in South Africa. Soc Psychiatry Psychiatr Epidemiol. 2003;38:715–719. doi: 10.1007/s00127-003-0695-3. [DOI] [PubMed] [Google Scholar]
  27. Jorm AF, Barney LJ, Christensen H, Highet NJ, Kelly CM, Kitchener BA. Research on mental health literacy: what we know and what we still need to know. Aust N Z J Psychiatry. 2006;40:3–5. doi: 10.1080/j.1440-1614.2006.01734.x. [DOI] [PubMed] [Google Scholar]
  28. Jorm AF, Oh E. Desire for social distance from people with mental disorders. Aust N Z J Psychiatry. 2009;43:183–200. doi: 10.1080/00048670802653349. [DOI] [PubMed] [Google Scholar]
  29. Kessler RC, Ustun TB. The World Mental Health (WMH) Survey Initiative Version of the World Health Organization (WHO) Composite International Diagnostic Interview (CIDI) Int J Methods Psychiatr Res. 2004;13:93–121. doi: 10.1002/mpr.168. [DOI] [PMC free article] [PubMed] [Google Scholar]
  30. Klin A, Lemish D. Mental disorders stigma in the media: review of studies on production, content, and influences. J Health Commun. 2008;13:434–449. doi: 10.1080/10810730802198813. [DOI] [PubMed] [Google Scholar]
  31. Lee S, Lee MT, Chiu MY, Kleinman A. Experience of social stigma by people with schizophrenia in Hong Kong. Br J Psychiatry. 2005;186:153–157. doi: 10.1192/bjp.186.2.153. [DOI] [PubMed] [Google Scholar]
  32. Lefley HP. Family burden and family stigma in major mental illness. Am Psychol. 1989;44:556–560. doi: 10.1037//0003-066x.44.3.556. [DOI] [PubMed] [Google Scholar]
  33. Link BG, Phelan JC. Conceptualizing stigma. Annual Review of Sociology. 2001;27:363–385. [Google Scholar]
  34. McSween JL. The role of group interest, identity, and stigma in determining mental health policy preferences. J Health Polit Policy Law. 2002;27:773–800. doi: 10.1215/03616878-27-5-773. [DOI] [PubMed] [Google Scholar]
  35. Ostman M, Kjellin L. Stigma by association: psychological factors in relatives of people with mental illness. Br J Psychiatry. 2002;181:494–498. doi: 10.1192/bjp.181.6.494. [DOI] [PubMed] [Google Scholar]
  36. Pescosolido BA, Martin JK, Long JS, Medina TR, Phelan JC, Link BG. “A disease like any other”? A decade of change in public reactions to schizophrenia, depression, and alcohol dependence. Am J Psychiatry. 2010;167:1321–1330. doi: 10.1176/appi.ajp.2010.09121743. [DOI] [PMC free article] [PubMed] [Google Scholar]
  37. Phelan JC, Bromet EJ, Link BG. Psychiatric illness and family stigma. Schizophr Bull. 1998;24:115–126. doi: 10.1093/oxfordjournals.schbul.a033304. [DOI] [PubMed] [Google Scholar]
  38. Phelan JC, Link BG. The growing belief that people with mental illnesses are violent: the role of the dangerousness criterion for civil commitment. Soc Psychiatry Psychiatr Epidemiol. 1998;33(Suppl 1):S7–12. doi: 10.1007/s001270050204. [DOI] [PubMed] [Google Scholar]
  39. Pinfold V, Huxley P, Thornicroft G, Farmer P, Toulmin H, Graham T. Reducing psychiatric stigma and discrimination--evaluating an educational intervention with the police force in England. Soc Psychiatry Psychiatr Epidemiol. 2003;38:337–344. doi: 10.1007/s00127-003-0641-4. [DOI] [PubMed] [Google Scholar]
  40. Robbins SP, Chatterjee P, Canda ER. Contemporary human behavior theory: A critical perspective for Social Work. Allyn & Bacon; Needham Heights, MA: 2005. [Google Scholar]
  41. Sartorius N, Gaebel W, Cleveland HR, Stuart H, Akiyama T, rboleda-Florez J, Baumann AE, Gureje O, Jorge MR, Kastrup M, Suzuki Y, Tasman A. WPA guidance on how to combat stigmatization of psychiatry and psychiatrists. World Psychiatry. 2010;9:131–144. doi: 10.1002/j.2051-5545.2010.tb00296.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  42. Sayce L. From psychiatric patient to citizen: Overcoming discrimination and social exclusion. St. Martin's Press, Inc; New York: 2000. [Google Scholar]
  43. Shrout PE, Alegria M, Canino G, Guarnaccia PJ, Vega WA, Duan N, Cao Z. Testing language effects in psychiatric epidemiology surveys with randomized experiments: results from the National Latino and Asian American Study. Am J Epidemiol. 2008;168:345–352. doi: 10.1093/aje/kwn116. [DOI] [PMC free article] [PubMed] [Google Scholar]
  44. Stier A, Hinshaw SP. Explicit and implicit stigma against individuals with mental illness. Australian Psychologist. 2007;42:106–117. [Google Scholar]
  45. Thornicroft G, Brohan E, Kassam A, Lewis-Holmes E. Reducing stigma and discrimination: Candidate interventions. Int J Ment Health Syst. 2008;2:3. doi: 10.1186/1752-4458-2-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
  46. U.S. Surgeon General. Mental health: A report of the US Surgeon General. Center of Mental Health Services, National Institute of Mental Health; Rockville, Maryland: 1999. Anonymous. [Google Scholar]
  47. Wahl OF. Mental health consumers' experience of stigma. Schizophr Bull. 1999;25:467–478. doi: 10.1093/oxfordjournals.schbul.a033394. [DOI] [PubMed] [Google Scholar]
  48. Wang PS, Berglund P, Olfson M, Pincus HA, Wells KB, Kessler RC. Failure and delay in initial treatment contact after first onset of mental disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry. 2005;62:603–613. doi: 10.1001/archpsyc.62.6.603. [DOI] [PubMed] [Google Scholar]
  49. Weiss MG, Ramakrishna J. Stigma interventions and research for international health. Lancet. 2006;367:536–538. doi: 10.1016/S0140-6736(06)68189-0. [DOI] [PubMed] [Google Scholar]
  50. World Health Organization [WHO] World Health Report 2001 Mental health: new understanding, new hope. World Health Organization; Geneva, Switzerland: 2001. [Google Scholar]
  51. WHO, editor. World Health Organization [WHO] The World Health Report 2004: Changing History. Geneva, Switzerland: 2004a. [Google Scholar]
  52. World Health Organization [WHO] The World Mental Health Composite International Diagnostic Interview 2004b [Google Scholar]

RESOURCES