Perceived Stigma, Social Support, and Depression - SAGE Journals

PERSONALITY AND SOCIAL PSYCHOLOGY BULLETIN Mickelson / PERCEIVED STIGMA, SOCIAL SUPPORT, DEPRESSION

Perceived Stigma, Social Support, and Depression Kristin D. Mickelson Kent State University This short-term longitudinal study examined the effect of perceived stigma on perceived support availability, negative interactions, and depression. Two interviews were conducted over a 4-month period with 109 parents of special needs children. Cross-sectional analyses revealed that perceived stigma was consistently related to less perceived support availability from respondents’ parents (i.e., the child’s grandparents), more negative interactions with spouse and grandparents, and increased depressive symptomatology. Longitudinal analyses indicated that perceived stigma increased negative interactions with grandparents as well as the respondent’s depression over time. Structural equation modeling also suggested that perceived support availability of grandparents partially mediated the longitudinal relation between perceived stigma and depression. Findings highlight the need for future studies to examine the complex relation between stressor dimensions, social support processes, and mental health.

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ndividuals stigmatized by society, based on their group affiliation or illnesses, may not feel the stigma as intensely as one might expect. Curiously, prior studies have focused mainly on social stigma—in other words, society’s view of the stigma associated with a particular stressor—rather than on affected individuals’ perceptions of stigma (see Crocker, Major, & Steele, 1998, for a review). This focus has led to the assumption that all individuals with a stigmatized stressor must feel equally stigmatized. Yet, the limited research on perceived stigma finds quite a bit of variability among affected individuals. In fact, those most socially stigmatized sometimes perceive the least amount of stigma (Crandall, 1991). The “equal stigma” assumption implicit in most social stigma research raises questions about the effect of perceived stigma on social relationships and psychological well-being. Although prior research on various stressors has found that perceived stigma is associated with poorer social support (e.g., Crandall & Coleman, 1992; Devins, Stam, & Koopmans, 1994; Gibbons, 1985) and psycho-

logical well-being (e.g., Devins et al., 1994; Link, Struening, Rahav, Phelan, & Nuttbrock, 1997; Rybarczyk, Nyenhuis, Nicholas, Cash, & Kaiser, 1995), most of the studies are cross-sectional and examine only one of these outcomes. The present study examined the effect of perceived stigma on social support and one pathway by which perceived stigma and social support influence adjustment over a 4-month period in parents of special needs children. Perceived Stigma and Social Support Stigma has been defined in various ways, ranging from having a personal characteristic that deviates from societal norms (Goffman, 1963) to social stereotyping or categorization (see Jones et al., 1984, for a review). Most of these definitions are made in reference to society placing the “stigma” label on an individual (i.e., social stigma) while excluding perceptions of the individual bearing that label. However, individual’s and society’s perceptions of stigma are probably acting, to some degree, as the cause and effect of each other. Therefore, ignoring the individual is equivalent to telling only one side of the story and makes the conclusions and theoretical interpretations of prior stigma research incomplete. Author’s Note: The research reported here was part of my doctoral dissertation at Carnegie Mellon University. Part of this research was presented at the International Network on Personal Relationships Conference, Williamsburg, Virginia, June 1995, and the Eighth International Conference on Personal Relationships, Banff, Alberta, Canada, August 1996. I am grateful to Vicki Helgeson, Mary Ann Parris Stephens, Sheldon Cohen, Tracy Herbert, Peggy Clark, Jerry Suls, and an anonymous reviewer for their comments on earlier drafts; Minhnoi Wroble for her invaluable assistance in conducting the study; Ellen Walters and Joel Greenhouse for their statistical consultation; Heidi Bissell for help in preparing the manuscript; and the parents who so generously gave of their time. Correspondence concerning this article should be addressed to Kristin D. Mickelson, Department of Psychology, Kent State University, P.O. Box 5190, Kent, OH 44242-0001; e-mail: [email protected]. PSPB, Vol. 27 No. 8, August 2001 1046-1056 © 2001 by the Society for Personality and Social Psychology, Inc.

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Mickelson / PERCEIVED STIGMA, SOCIAL SUPPORT, DEPRESSION Perceived stigma is defined in this study as the individual’s personal feelings about the stressor, such as embarrassment, shame, or deviance, and the individual’s projection of these feelings onto others, which may or may not accurately reflect network members’ and/or society’s feelings about the stressor. The majority of studies examining stigma and social support focus on social stigma. Although the limited literature on perceived stigma and social support has some mixed results (e.g., Mansouri & Dowell, 1989; Mizuno, Moneyham, Sowell, Demi, & Seals, 1998), most studies find a negative association between the two. Perceived stigma is related to negative perceptions of others (Crandall & Coleman, 1992), negative interactions with others (Devins et al., 1994; Gibbons, 1985; Link, Cullen, Struening, Shrout, & Dohrenwend, 1989), and perceived and actual restrictions in social activities (Jacoby, 1994; MacDonald & Anderson, 1984, respectively). Moreover, those with greater perceived stigma depend more solely on those within their household for social support than those who perceive less stigma (Lennon, Link, Marbach, & Dohrenwend, 1989). Individuals who perceive a stigma may feel that those who live with them and their stressor on a day-to-day basis are more accepting and understanding, whereas those outside the household are more judgmental. Furthermore, their fear of rejection or insult may lead to impaired perceptions of support availability and social interactions as well as to increased withdrawal from their network of family and friends. Despite the substantial literature on issues facing parents of special needs children, including social stigma (e.g., Frey, Greenberg, & Fewell, 1989; Sandler, Warren, & Raver, 1995; Shapiro & Tittle, 1986), no one has specifically examined the effect of perceived stigma on these parents’ social support processes. The consequences of perceived stigma on these parents’ social support should be similar to the findings reviewed above. Thus, the first two hypotheses of the present study were as follows: Hypothesis 1: Perceived stigma will be related to greater negative social interactions and less perceived support availability. Hypothesis 2: The relation between perceived stigma and social support will be stronger for those outside the parent’s household than for those within the household.

Prior research also suggests that social support declines over time, most often explained by the depletion of resources and increased burden to network members (Eckenrode & Wethington, 1990; Lepore, Evans, & Schneider, 1991; Schulz & Tompkins, 1990). Another reason for declines in social support may be an individual’s level of perceived stigma. To date, no published

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studies have examined how perceived stigma and social support affect each other over time. Even without prior evidence, it is unlikely that the effect of perceived stigma on social support is temporary; rather, it may lead to a vicious circle. Perceived stigma impairs social support perceptions, which may, in turn, reinforce parents’ feelings of shame and embarrassment about their child. But, will perceived support availability and negative social interactions both be similarly affected by perceived stigma? And, will they both affect changes in perceived stigma over time? Because of the lack of research on these causal links, no specific predictions were made for the present study; instead, the longitudinal analyses were exploratory in nature. Perceived Stigma and Depression As with social support, previous research has focused mainly on social stigma and depression (see Crocker et al., 1998). Several recent studies, however, have linked perceived stigma to depression or emotional distress (e.g., Baxter, 1989; Coffey, Leitenberg, Henning, Turner, & Bennett, 1996; Devins et al., 1994; Hermann, Whitman, Wyler, Anton, & Vanderzwagg, 1990; Mansouri & Dowell, 1989). Perceived stigma has been positively related to depression among leg amputees (Rybarczyk et al., 1995), HIV/AIDS patients (Crandall & Coleman, 1992), family caregivers of HIV-infected women (Demi, Bakeman, Moneyham, Sowell, & Seals, 1997), and parents of children with mental retardation (Baxter, 1989).1 One longitudinal study found that perceived stigma increased depression over time in mentally ill, substance-abusing men (Link et al., 1997). The feelings of shame or embarrassment that encompass perceived stigma might inhibit an individual’s adjustment by maintaining a focus on negative aspects of the stressor. In the present study, the cross-sectional and longitudinal links were examined between perceived stigma and depression. Based on the above findings, the third hypothesis of the present study was as follows: Hypothesis 3: Perceived stigma will increase depressive symptomatology over time.

Perceived Stigma, Social Support, and Depression Although several of the aforementioned studies included measures of social support, its role in explaining the association between perceived stigma and depression was not specifically examined. This oversight is surprising given the abundance of evidence showing social support to be an important factor in psychological and physical adjustment to stressful life events (for reviews, see Barnett & Gotlib, 1988; Uchino, Cacioppo, & Kiecolt-Glaser, 1996).

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PERSONALITY AND SOCIAL PSYCHOLOGY BULLETIN

Researchers have traditionally argued that social support acts as an independent buffer in the link between stress and adjustment (see Cohen & Wills, 1985, for a review). More recently, researchers have proposed and found evidence for the mediational role of social support (e.g., Kaniasty & Norris, 1993; Lepore et al., 1991; Quittner, Glueckauf, & Jackson, 1990). In this model, the stressor indirectly affects well-being through its effect on social support. Given the prediction that perceived stigma will affect social support processes and adjustment, the mediational model of social support was tested in the present study. As suggested by Kaniasty and Norris (1993), the deterioration of social support processes by the stressor (or, in this case, the perceived stigma attached to the stressor) may explain the wellestablished link between stress and psychological adjustment. Thus, the final hypothesis was as follows: Hypothesis 4: Negative social interactions and perceived support availability will mediate the longitudinal relation between perceived stigma and depression.

Introduction to Present Study To test these hypotheses, parents of special needs children were interviewed twice over a 4-month period. Having a child with special needs was chosen because it is a chronic stressor (due to financial, time, and emotional demands) and one that should demonstrate sufficient variability in perceived stigma. Parents’ perceived support availability and negative interactions were assessed for two network members: their spouse/partner and their parents—the child’s grandparents. (To avoid confusion, hereafter the individual’s parents will be referred to as the “grandparents.”) Spousal/partner support was chosen because it has been found to be a stronger predictor of adjustment than support from other network members (Thoits, 1995); in addition, no one has examined the association between perceived stigma and spousal support. Grandparents were chosen as the outside household network member because they often do not live in the same household but maintain enough regular contact with parents to provide a good longitudinal assessment of social interactions. Grandparents also have a unique role in social support processes for this particular stressor. They often serve as a role model for other network members’ reactions to the special needs child (Vadasy, 1987). Parents also may feel that they disappointed the grandparents by not giving them a “normal” grandchild—a feeling that might not be extended to other network members (e.g., friends, coworkers, extended relatives). Much of the research on grandparent support for parents of special needs children has been anecdotal and mixed (Sandler et al., 1995). In

addition, no one has examined the role of perceived stigma in grandparent support. METHOD

Participants The initial telephone interview included 109 parents. Of these parents, 102 (93.6%) participated in the 4month follow-up interview. There were no differences between parents who participated in the 4-month followup and those who did not on any of the sociodemographic or study variables. Please see Table 1 for the sociodemographic profile of the participants in the present study. Eligibility for participation required that a parent have a child between birth and 7 years of age with a diagnosis of mental retardation, autism, or developmental delays. Most diagnoses of mental retardation, autism, or developmental delays are made between birth and 7 years (Marsh, 1992). Therefore, time since onset or diagnosis was minimized to try to capture this initial adjustment period. The average amount of time since diagnosis was 24 months. In addition to limiting the adjustment period, parents with older children are also adjusting to different issues pertaining to their offspring’s special needs (e.g., vocational placement, longterm care after the parent’s death). As such, perceptions of stigma may be less important for the support processes of parents of older special needs children. To obtain independent data, only one parent of each child was interviewed. All parents had only one child with one of the above diagnoses, except for two parents who both had three children with autism. Except for one child who was adopted, all children were the biological offspring of their parent. Recruitment of Participants The present study utilized multiple recruitment strategies as a way to reduce the bias from using only a single recruitment approach. First, local parents were recruited through several chapters of the local mental health/mental retardation agency, which registers all county children diagnosed with significant delays, as well as from two local chapters of Arc (formerly known as the Association for Retarded Citizens). Each organization mailed letters to eligible parents describing the study and requesting participants. Of 56 parents who expressed initial interest in the study, 2 decided not to participate and 2 were not eligible (child was too old, foster parent to child). One interview was terminated because the parent did not understand the questions, and 5 parents were unreachable (disconnected phone, no telephone number, not home after five contact attempts). The remaining 44 parents (80%; 43 women,

Mickelson / PERCEIVED STIGMA, SOCIAL SUPPORT, DEPRESSION

TABLE 1:

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Sociodemographic Profile of Parents of Special Needs Children Participant Profile

Gender N mothers (%) N fathers (%) Average age Marital status (%) Married/cohabiting Divorced/separated Never married Race (%) Caucasian African American Hispanic Asian American Religion (%) Protestant Catholic Jewish No religion Education (%) Less than high school High school Some college College education Postgraduate Employment (%) Employed full time Employed part time Homemakers Unemployed Other children Recruitment N Internet (%) N Local organization (%)

Special Needs Children a

77 (70.6) 32 (29.4) 34.7 years

93.6 2.8 3.7 90.0 6.4 1.8 1.8

Gender N boys (%) N girls (%) Average age Diagnosis (%) Down’s syndrome Autism Developmental delays Other etiologies b Average delay

83 (73.5) 30 (26.5) 40.7 months (range = 3 months to 7 years) 33.0 31.2 22.0 13.8 37% from chronological age (range = 0% to 83%)

44.5 42.7 4.5 8.2 3.6 6.4 28.2 34.5 27.3 56.4 11.8 22.7 9.1 Average = 1 child (52% boys, 48% girls) 65 (59.6) 44 (40.4)

a. This distribution of child sex is not unusual when dealing with special needs children. The greater prevalence of developmental disabilities among boys is probably due to sex-linked recessive conditions (Tyson & Favell, 1988) and society’s higher expectations for boys’ intellectual competence than for girls’ (Marsh, 1992; Tyson & Favell, 1988). b. Parents provided the most recent professional assessment of overall developmental age or a breakdown of developmental age in five major areas (an average of the five areas was then used as the overall developmental age). To determine the magnitude of the developmental delays, the child’s chronological and developmental ages were first converted into months and the following formula was used: 1 – (developmental age/chronological age).

1 man) agreed to participate in the study and the initial interview was successfully completed. In addition to local community organizations, parents were recruited via Internet newsgroups. A brief description of the study, including eligibility requirements, was posted twice during a 3-month interval on four Internet groups. Ninety-five replies were received via the Internet. Of these replies, 65 parents (68%; 34 women, 31 men) were contacted and interviewed. Of the remaining 30 replies, two thirds were eligible parents with whom an interview could not be scheduled after three contact attempts and the other one third were either ineligible parents (i.e., child was too old) or professionals inquiring about the study.

Analyses revealed that parents recruited from the Internet significantly differed from parents recruited through local community organizations on five demographic variables. First, 31 of the 32 fathers interviewed for the study were recruited from the Internet. Second, parents from the Internet were more likely to have autistic children, whereas parents from the local community organizations were more likely to have developmentally delayed children; no difference in prevalence of Down’s syndrome or other mental retardation etiologies was found between Internet and local parents. Third, parents from the Internet were more educated than parents from the local community organizations. Fourth, parents from the Internet were older than parents from the

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local community organizations. Finally, the children from the Internet were older than those from the local community organizations. Because of these parental differences, recruitment strategy was controlled for in all of the analyses. Interview Procedure Both the initial interview (Time 1 [T1]) and the follow-up interview (Time 2 [T2]) were conducted by telephone and lasted approximately 45 minutes. After a brief introduction, parents were asked to provide (or update at T2) demographic information, including parent’s age, education, and employment, as well as information about the child’s diagnosis, age at diagnosis, and developmental age. Both interviews assessed perceived stigma, perceived support availability, negative social interactions, and depressive symptomatology. Instruments All of the instruments were piloted on 11 parents to ensure that questions were clear and appropriately worded for parents of children with special needs. These parents were asked to identify problematic and unclear questions. From pilot testing, several modifications were made to the wording of items. Perceived stigma. Perceived stigma associated with the child’s diagnosis was assessed with an eight-item measure adapted from two previously used measures (Crandall, 1991; Levinson & Starling, 1981). Parents were asked to indicate on a 5-point scale how true or false the statements were for them (1 = definitely false, 3 = neither, 5 = definitely true). The items asked about personal feelings (e.g., “I feel that I am odd or abnormal because of my child’s special needs”; “There have been times when I have felt ashamed about having a child with special needs”) and other people’s behaviors toward the individual (e.g., “People treat me differently when they find out that I have a child with special needs”; “People look down on me because I have a child with special needs”). The eight items were summed and the mean was calculated to obtain a perceived stigma score for each parent, with higher scores indicating greater perceived stigma. The eight items had an internal consistency coefficient of .76 at T1 and a test-retest reliability of .78 at T2. Sources of support. As stated earlier, participants were surveyed about their impressions of two specific network members: spouse/partner and grandparents. If a person’s parents were deceased, his or her in-laws were used instead. If a person’s parents were divorced, they were told to choose the one with whom they had the most contact. Only 3 people reported not having a spouse or significant other (n = 106), and 1 person reported that both parents and in-laws were deceased (n = 108).

Perceived support availability. Perceived support availability was assessed individually for both of the network members with an adapted version of the UCLA–Social Support Inventory (Dunkel-Schetter, Feinstein, & Call, 1986). Parents were asked to rate the perceived availability of three types of support (emotional, informational, tangible) on 5-point scales (1 = not at all, 5 = extremely). Emotional support was defined as love, caring, understanding, or reassurance regarding the child and his or her diagnosis. Informational support was defined as information or advice about the child and his or her diagnosis. Tangible support was defined as help with household tasks, errands, or child care. Separate questions were asked to assess each type of support. Specifically, parents were asked to indicate the extent to which they could turn to both sources for each of the three kinds of support. A summed index of the items was computed separately for spouse and grandparents. Cronbach’s alpha for the three items at T1 was .70 for spouse and .78 for grandparents. Higher scores indicate more perceived support availability. Negative social interactions. Negative social interactions were assessed by the following four questions: (a) “During the past 4 months, how often did you feel your spouse (grandparents) did not understand what you were going through?” (b) “During the past 4 months, how often did you feel your spouse (grandparents) was withdrawn or avoided you?” (c) “During the past 4 months, how often were you disappointed by your spouse (grandparents) with respect to your child’s diagnosis?” and (d) “During the past 4 months, how often has your spouse (grandparents) made hurtful or insensitive remarks about your child, even if unintentional?” (1 = never, 5 = very often) (Dunkel-Schetter et al., 1986; Helgeson, 1993b). Responses to these four questions were summed to obtain a negative social interaction score for both support sources, with higher scores indicating more negative interactions. Cronbach’s alpha for the four questions at T1 was .79 for spouse and .73 for grandparents. Depressive sy m pto m ato l o g y. Th e Cent e r f or Epidemiologic Studies Depression Scale (CES-D) (Radloff, 1977) was included to assess the parent’s current level of depressive symptomatology. Cronbach’s alpha for the CES-D was high in both interviews (T1 alpha = .89, T2 alpha = .88). The items were summed to obtain a score of depressive symptomatology, with higher scores indicating more depressive symptoms. RESULTS

Perceived Stigma: Descriptive Results Because of the paucity of research on perceived stigma and the commonly held assumption that all indi-


TABLE 2:

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Bivariate Correlations of Study Variables Time 1 1

Time 1 1. Perceived stigma 2. Depression Perceived availability 3. Spouse 4. Grandparents Negative interactions 5. Spouse 6. Grandparents Time 2 7. Perceived stigma 8. Depression Perceived availability 9. Spouse 10. Grandparents Negative interactions 11. Spouse 12. Grandparents

— 0.37****

2

3

Time 2 4

5

6

7

8

9

10

11

12

—

–0.21** –0.25** –0.37**** –0.22** 0.29*** 0.19 0.35**** 0.15

— 0.25**

–0.52**** –0.15 — –0.14 –0.49**** 0.35****

0.78**** 0.37**** –0.12 0.39**** 0.47**** –0.19 –0.14 –0.17 –0.31*** –0.20** 0.08 0.16 0.36**** 0.08

—

–0.37**** 0.21** –0.24** 0.20

— 0.30*** 0.11

— 0.37**** —

0.72**** 0.24** –0.45**** –0.16 –0.15 –0.29*** 0.21** 0.77**** –0.17 –0.45**** –0.23** –0.28*** –0.47**** –0.16 0.42**** 0.18 –0.17 –0.54**** 0.28*** 0.58****

— 0.30***

—

0.20** 0.44**** –0.71**** –0.17 — 0.42**** 0.22** –0.12 –0.52**** 0.14

—

**p ≤ .05. ***p ≤ .01. ****p ≤ .001.

viduals experience stigma in a similar manner, descriptive results concerning perceived stigma are informative. Overall, parents reported a moderate amount of perceived stigma with their child’s special needs at T1. On a scale of 1 to 5, the overall mean for parents was 2.52 (SD = .85). Only 4.6% of parents had a score of 4 or greater, whereas 29.4% had a score between 1 and 2. Mothers and fathers reported virtually the same amount of perceived stigma (M = 2.53, SD = .89; M = 2.50, SD = .76, respectively). Perceived stigma did differ by child’s diagnosis: parents of children with a diagnosis of mental retardation reported significantly less perceived stigma (M = 2.32, SD = .81) than did parents of children with autism/developmental delays (M = 2.70, SD = .85), F(1, 107) = 5.78, p < .05. There were no significant differences in perceived stigma by child sex, severity of the delays, time since diagnosis, or whether the parent had other nondisabled children. Overview of Analyses Multiple linear regression analyses were performed to examine the relation of perceived stigma to social support and depression at both interview times. (See Table 2 for bivariate correlations between all of the major study variables.) To determine which variables to control for in the analyses, child and parent demographics were analyzed for their relation to social support and depression. Based on the findings, child’s age, child’s diagnosis, parent’s sex, and recruitment strategy were controlled for in all analyses.2 For the regression analyses, the four controls were entered simultaneously in the first step and

perceived stigma was entered in the second step. Because perceived stigma, the two social support measures, and depression were assessed using different scales, they were all standardized prior to analysis. Perceived Stigma and Social Support Providing partial support for the first hypothesis, perceived stigma was negatively related to perceived support availability of grandparents at T1 and marginally related to perceived availability of spouse at T1 (p = .10; see Table 3). Perceived stigma also was positively related to negative social interactions with spouse and grandparents at T1. At T2, perceived stigma was positively related to negative interactions with grandparents and marginally related to perceived support availability of grandparents (p = .08).3 Consistent with the second hypothesis, the relation of perceived stigma to social support was stronger for grandparents (those outside the household) than for spouse. To test the longitudinal relation between perceived stigma and social support, linear panel analyses were performed (Kessler & Greenberg, 1981). Specifically, analyses were conducted to determine whether perceived stigma at T1 predicted social support at T2, controlling for the respective support outcome variable at T1. Causal analyses revealed that perceived stigma at T1 predicted increased negative interactions with grandparents at T2, controlling for negative interactions with grandparents at T1 (b = 0.19, SE = 0.09), t(99) = 1.97, p < .05. Perceived stigma at T1 did not predict grandparent support availability at T2 or either of the spousal support

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TABLE 3:


Perceived Stigma Predicting Social Support and Depression: Cross-Sectional Results Time 1 b

Perceived availability Spouse –0.15* Grandparents –0.32**** Negative interactions Spouse 0.29*** Grandparents 0.31*** Depression 0.33****

SE

Time 2 R

2

0.10 0.02 0.10 0.09 0.09 0.08 0.09 0.09 0.10 0.10

b

–0.00 –0.18*

SE

R

2

0.11 0.00 0.10 0.03

0.16 0.11 0.02 0.40**** 0.10 0.14 0.35**** 0.10 0.11

NOTE: Separate multiple linear regressions were performed, controlling for child’s age, diagnosis, parent’s sex, and recruitment strategy. *p ≤ .10. **p ≤ .05. ***p ≤ .01. ****p ≤ .001.

measures at T2. Furthermore, no evidence was found for a reciprocal relationship between perceived stigma and social support. In other words, perceived support availability and negative interactions at T1 did not predict perceived stigma at T2. Thus, the analyses suggest unidirectional causality: Perceived stigma increases negative interactions with grandparents over time. Perceived Stigma and Depression Consistent with the third hypothesis, perceived stigma showed a strong, positive relation to depression at both T1 and T2 (see Table 3). In addition, perceived stigma at T1 predicted increased depression at T2, controlling for depression at T1 (b = 0.29, SE = 0.10), t(101) = 2.93, p < .01. This causal relationship was also unidirectional; in other words, depression at T1 did not predict perceived stigma at T2. To determine whether social support acted as a mediator in the longitudinal relation between perceived stigma and depression (Hypothesis 4), regression analyses and structural equation modeling were performed. First, for the regression analyses, perceived support availability and negative interactions at T2 were entered into the linear panel analyses of perceived stigma at T1 predicting depression at T2 (controlling for depression at T1). Two separate analyses were conducted for the T2 social support measures: (a) spousal support availability and negative interactions with spouse and (b) grandparent support availability and negative interactions with grandparents. Only the grandparent support measures partially mediated the effect of perceived stigma on depression. To assess the magnitude of mediation, the reduction in variance accounted for by perceived stigma when the mediators are entered into the model was calculated. The effect of perceived stigma at T1 on depression at T2 (R2 = 0.06) was reduced by 33.3% (R2 = 0.04) when perceived support availability and negative interactions with grandparents at T2 were statistically controlled for in the model.

The hypothesized structural equation model testing the mediation of perceived stigma and depression by grandparent support is illustrated in Figure 1. Using an EQS program, demographic (exogenous) variables (not shown in Figure 1) were initially free to affect all other variables. In the final model, paths were retained from child’s age to perceived stigma, child’s diagnosis to depression at T1, and parent’s sex to depression and perceived availability of grandparents at T2. (Recruitment strategy was deleted from the final model because it was not significantly related to any variables in this model.) Including these variables ensured that any initial inequalities among parents were accounted for by the model, thus allowing for the assessment of the unique effects of the main study variables. Although the model fit the data well, χ2(15, N = 102) = 13.15, p = .59, Normed Fit Index (NFI) = .92, the path from negative interactions with grandparents at T2 to depression at T2 was not significant (p = .71; shown in the model as a dotted line). A “trimmed model” that eliminated this path fit the data just as well as the original model, χ2(16, N = 102) = 13.27, p = .65, NFI = .92. The standardized estimates for the final trimmed model are shown in Figure 1. This structural equation model suggests that perceived support availability of (but not negative interactions with) grandparents partially accounts for the longitudinal relationship between perceived stigma and depression. Furthermore, an alternate model testing whether depression at T1 and perceived stigma at T2 is mediated by grandparent support at T2 did not fit the data, χ2(17, N = 102) = 32.52, p = .01, NFI = . 86. 4 Ho wev er, b ecau s e o f s amp le s i ze a nd generalizability issues in the present study, these results should be interpreted with caution and further studies should be conducted to replicate this mediational model. Post Hoc Analyses on Grandparent Support The surprisingly consistent results for perceived stigma and grandparent support led to post hoc analyses to understand why grandparent support was so strongly affected by perceived stigma. One potential explanation is that individuals might feel grandparents do not understand the seriousness of the child’s special needs (George, 1988). In the initial interview, parents were asked to rate how serious they felt their child’s special needs were on a scale of 1 (not at all) to 5 (very). They also rated how serious they felt their spouse and grandparents perceived the child’s special needs. Post hoc analyses revealed that individuals felt grandparents perceived the special needs less seriously (M = 3.29) than they themselves did (M = 3.75), t(106) = 3.83, p < .001, and


Figure 2

Figure 1

Structural equation model estimating the mediation of perceived stigma and depression by support availability and negative interactions with grandparents. NOTE: Parameters with a significance of p > .10 were deleted from the final model.

marginally less serious than they felt their spouse did (M = 3.55), t(103) = 1.92, p = .06. To further explore this difference in “perceived severity” of the child’s special needs, multiple linear regressions were performed to examine whether this variable moderated the relation of perceived stigma to grandparent support. In fact, post hoc analyses revealed that individuals’ beliefs about how serious the grandparents perceived the child’s special needs significantly interacted with perceived stigma at T1 to modify its relation to negative interactions with grandparents (b = –.79, SE = .35), t(106) = –2.25, p < .05, and perceived support availability of grandparents at T1 (b = .80, SE = .34), t(106) = 2.37, p < .05. To determine the direction of the interaction and for ease of presentation in a graph, perceived stigma was split at the median and grandparent’s perceived severity was trichotomized. As shown in Figure 2, when parents felt that grandparents minimized the child’s special needs, perceptions of stigma were associated with more negative interactions (a parallel interaction was found for perceived support availability). Similar analyses with spousal support failed to find a significant interaction. Consistent with Lennon et al. (1989), these results suggest that lack of understanding may be one reason why perceived stigma is especially strong for grandparents (or those outside the home). DISCUSSION

The present study supports the idea that not all individuals experience the same level of stigma, even though they have the same socially stigmatized stressor.

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Interaction of perceived stigma and grandparents’ view of the child’s special needs on negative interactions with grandparents at Time 1.

Although, on average, parents only perceived a moderate amount of stigma with their child’s special needs, the variability ranged from no stigma to strong feelings of stigma. Stigma theorists should focus on how society influences an individual’s perceptions of stigma and whether the two concepts are substantially different in their effects on social relationships and well-being. Addressing the latter issue, the present study examined the effect of perceived stigma on social support and depression. As predicted in the first two hypotheses, results suggest that perceived stigma strongly affects support perceptions of grandparents but has only limited impact on spousal support. These findings are consistent with the literature that shows perceived stigma has a negative relation to one’s support perceptions and interactions (Crandall & Coleman, 1992; Lennon et al., 1989) and that perceived stigma has a stronger relation to support perceptions for those outside of than for those within the household (Lennon et al., 1989). However, support for this latter argument is incomplete without examining the effect of perceived stigma on social support from other “outside household” network members (e.g., friends, neighbors, coworkers). Given that perceived stigma has a substantial impact on family support, it should be even more impactful with newer network relations, as compared with these established ones. Individuals should be more aware and concerned about possible rejection or judgment when interacting with a new relation. Moreover, designating grandparents as “people outside the home” obscures the fact that many grandparents may be substantially implicated in their grandchildren’s rearing (more so than other people outside the home). Thus, choosing grandparents may not have been the most accurate way to examine the distinction made by Lennon et al. (1989). Even so, the results suggest that feelings of stigma are less likely to affect the marital rela-

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tionship (characterized by emotional closeness and dayto-day interactions) than other extended family relationships (characterized by less frequent contact and possibly less emotional closeness). This distinction between supporters “inside” and “outside” the home needs further study; for example, by examining the link between perceived stigma and social support in other stressors that might implicate different network members (e.g., unemployment–coworkers, divorce–friends). In addition to examining the cross-sectional relation between perceived stigma and social support, this study is one of the first to examine the causal relation between the two processes. Contrary to the idea that the relationship would be reciprocal, longitudinal results suggest unidirectional causality; specifically, perceived stigma increases negative interactions with grandparents over time. The unidirectional effect seems surprising given that erosion of social relationships should feedback into perceptions of stigma. One potential explanation is that a premorbid measure of social support was not obtained; therefore, it is not possible to definitively conclude that initial levels of perceived stigma are unaffected by social support perceptions. Nonetheless, these results begin to address how stressors influence social support processes. One argument consistent with the results is that stressors erode social support over time (Helgeson, 1993a; Kaniasty & Norris, 1993; Lepore et al., 1991). Social support is not simply mobilized in the face of stress; rather, the stressor plays a major role in whether, how, and with whom social support is enacted or perceived (Bolger, Foster, Vinokur, & Ng, 1996). Moreover, the results suggest that it may be more beneficial to examine stressor dimensions that vary across a variety of life events (e.g., perceived stigma, visibility) instead of focusing on individual effects of specific stressors. By examining common dimensions of stressors, we can arrive at a more parsimonious theory of how stressful life events influence social support. The longitudinal results not only support the erosion of social relationships by perceived stigma but also the escalation of depression. In conjunction with the social support findings, these results strongly reject any notion that perceived stigma’s effects are transitory. Perceptions of stigma powerfully affect individuals’ views not only of their network but also of themselves. Furthermore, although these results cannot directly address the idea of a vicious circle between perceived stigma and depression or social support, they suggest that perceptions of stigma may start an individual on a dangerous psychological path. One such path tested in the present study was the mechanism by which perceived stigma affects depression. Structural equation modeling supported the hypothesis that social support (specifically from grand-

parents) partially mediates the link between perceived stigma and depression. These results are consistent with Kaniasty and Norris (1993), who found that deterioration of social support partly explained psychological distress following a natural disaster. Similarly, in the present study, it appears that intense feelings of shame and embarrassment some parents have about their child’s special needs distort their perceptions and interactions with grandparents, which may, in turn, partially account for their depression. However, partial mediation also suggests that other factors not assessed in the present study may have been mediating the relationship (e.g., self-esteem, withdrawal from social activities). Multiplewave studies are needed to determine whether perceived stigma’s effect on depression and social support turns into a vicious circle or remains unidirectional. Perhaps most interesting are the strong and consistent results for perceived stigma and support perceptions of grandparents. Why is perceived stigma so influential for support perceptions of grandparents but not for spouse? Individuals may feel grandparents are less understanding because they are not involved in the dayto-day issues in which a spouse is involved or cannot directly empathize with the situation as a spouse can. As shown in the ancillary analyses, parents felt grandparents perceived the child’s special needs somewhat less seriously than they felt their spouse did and much less seriously than they themselves did. Furthermore, their feelings about how serious the grandparents view their child’s special needs exacerbated the relation of perceived stigma to support availability and negative interactions with grandparents. One other mechanism by which perceived stigma may be influencing support perceptions of grandparents is through actual support behaviors. However, post hoc analyses of supportseeking and unsolicited support from grandparents in the present study failed to find any significant relationship with perceived stigma. Alternatively, there may be inherent tensions within the parent-child relationship that could intensify the effect of perceived stigma on grandparent support. As stated earlier, parents may believe they let the grandparents down by not giving them the “perfect” grandchild. Future studies are needed to understand the unique issues involved in support from grandparents (as opposed to other network members), especially for this particular stressor. There are a couple limitations to the conclusions that can be drawn from the present study. First, there was a possible self-selection bias. Because the study focused on stigma and social relationships, those perceiving the most stigma and/or those who had the poorest social relationships may have been less likely to participate in the study. This bias suggests that the perceived stigma

Mickelson / PERCEIVED STIGMA, SOCIAL SUPPORT, DEPRESSION results may have been attenuated and may actually be stronger in a more representative sample. A second limitation was the representativeness of the sample with respect to the recruitment of parents into the study. Because more than half of the participants were solicited via the Internet, the sample was not representative of the population and, therefore, the results of the study cannot be generalized to all parents of special needs children. Nevertheless, these results demonstrate the importance of examining perceived stigma in conjunction with social stigma. Furthermore, to fully understand the complex and dynamic nature of social support and its influences on stress and adjustment, this study suggests the necessity of systematically examining the effect of stressors on social support. NOTES 1. In this particular study, the author operationalized perceived stigma as the stress experienced by parents as a result of other people’s attitudes toward their child. Although this encompasses one aspect of perceived stigma, it is not a complete assessment of the concept. 2. Severity of delay and time since diagnosis were not related to any of the study variables; thus, they were not included in the analyses. Inclusion of these two variables as covariates did not change the pattern of results on any of the analyses. 3. Because the social support measures of perceived availability and negative interactions were significantly correlated for both spouse and grandparents (see Table 2), a more conservative test of the association between perceived stigma and social support was performed where the support counterpart was controlled for in the regression analyses (i.e., for perceived stigma predicting perceived availability of grandparents, negative interactions with grandparents was entered as a covariate). Although the strength of some regression coefficients was reduced, these analyses revealed the same pattern of results. 4. Consistent with the regression analyses, a similar structural equation model testing spousal support as a mediator did not fit the data, 2 χ (4, N = 102) = 23.23, p < .001, Normed Fit Index (NFI) = .83.

REFERENCES Barnett, P. A., & Gotlib, I. H. (1988). Psychosocial functioning and depression: Distinguishing among antecedents, concomitants, and consequences. Psychological Bulletin, 104, 97-126. Baxter, C. (1989). Investigating stigma as stress in social interactions of parents. Journal of Mental Deficiency Research, 33, 455-466. Bolger, N., Foster, M., Vinokur, A. D., & Ng, R. (1996). Close relationships and adjustment to a life crisis: The case of breast cancer. Journal of Personality and Social Psychology, 70, 283-294. Coffey, P., Leitenberg, H., Henning, K., Turner, T., & Bennett, R. T. (1996). Mediators of the long-term impact of child sexual abuse: Perceived stigma, betrayal, powerlessness, and self-blame. Child Abuse and Neglect, 20, 447-455. Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98, 310-357. Crandall, C. S. (1991). AIDS-related stigma and the lay sense of justice. Contemporary Social Psychology, 15, 66-67. Crandall, C. S., & Coleman, R. (1992). AIDS-related stigmatization and the disruption of social relationships. Journal of Social and Personal Relationships, 9, 163-177. Crocker, J., Major, B., & Steele, C. (1998). Social stigma. In D. Gilbert, S. T. Fiske, & G. Lindzey (Eds.), Handbook of social psychology (Vol. 2, 4th ed., pp. 504-553). Boston: McGraw-Hill. Demi, A., Bakeman, R., Moneyham, L., Sowell, R., & Seals, B. (1997). Effects of resources and stressors on burden and depression of

1055

family members who provide care to an HIV-infected woman. Journal of Family Psychology, 11, 35-48. Devins, G. M., Stam, H., & Koopmans, J. P. (1994). Psychological impact of laryngectomy mediated by perceived stigma and illness intrusiveness. Canadian Journal of Psychiatry, 39, 608-616. Dunkel-Schetter, C., Feinstein, L., & Call, J. (1986). UCLA social support inventory. Los Angeles: University of California. Eckenrode, J., & Wethington, E. (1990). The process and outcome of mobilizing social support. In S. Duck & R. C. Silver (Eds.), Personal relationships and social support (pp. 83-103). London: Sage Ltd. Frey, K. S., Greenberg, M. T., & Fewell, R. R. (1989). Stress and coping among parents of handicapped children: A multidimensional approach. American Journal on Mental Retardation, 94, 240-249. George, J. D. (1988). Therapeutic intervention for grandparents and extended family of children with developmental delays. Mental Retardation, 26, 369-375. Gibbons, F. X. (1985). A social-psychological perspective on developmental disabilities. Journal of Social and Clinical Psychology, 3, 391404. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall. Helgeson, V. S. (1993a). The onset of chronic illness: Its effect on the patient-spouse relationship. Journal of Social and Clinical Psychology, 12, 406-428. Helgeson, V. S. (1993b). Two important distinctions in social support: Kind of support and perceived versus received. Journal of Applied Social Psychology, 23, 825-845. Hermann, B. P., Whitman, S., Wyler, A. R., Anton, M. T., & Vanderzwagg, R. (1990). Psychosocial predictors of psychopathology in epilepsy. British Journal of Psychiatry, 156, 98-105. Jacoby, A. (1994). Felt versus enacted stigma—a concept revisited: Evidence from a study of people with epilepsy in remission. Social Science and Medicine, 38, 269-274. Jones, E. E., Farina, A., Hastorf, A. H., Markus, H., Miller, D. T., & Scott, R. A. (1984). Social stigma: The psychology of marked relationships. New York: Freeman. Kaniasty, K., & Norris, F. H. (1993). A test of the social support deterioration model in the context of natural disaster. Journal of Personality and Social Psychology, 64, 395-408. Kessler, R. C., & Greenberg, D. F. (1981). Linear panel analysis: Models of quantitative change. New York: John Wiley. Lennon, M. C., Link, B. G., Marbach, J. J., & Dohrenwend, B. P. (1989). The stigma of chronic facial pain and its impact on social relationships. Social Problems, 36, 117-134. Lepore, S. J., Evans, G. W., & Schneider, M. L. (1991). Dynamic role of social support in the link between chronic stress and psychological distress. Journal of Personality and Social Psychology, 61, 899-909. Levinson, R. M., & Starling, D. M. (1981). Retardation and the burden of stigma. Deviant Behavior, 2, 371-390. Link, B. G., Cullen, F. T., Struening, E., Shrout, P., & Dohrenwend, B. P. (1989). A modified labeling theory approach in the area of the mental disorders: An empirical assessment. American Sociological Review, 54, 400-423. Link, B. G., Struening, E. L., Rahav, M., Phelan, J. C., & Nuttbrock, L. (1997). On stigma and it’s consequences: Evidence from a longitudinal study of substance abuse. Journal of Health and Social Behavior, 38, 177-190. MacDonald, L. D., & Anderson, H. R. (1984). Stigma in patients with rectal cancer: A community study. Journal of Epidemiology and Community Health, 38, 284-290. Mansouri, L., & Dowell, D. A. (1989). Perceptions of stigma among the long-term mentally ill. Psychosocial Rehabilitation Journal, 13, 79-91. Marsh, D. T. (1992). Families and mental retardation: New directions in professional practice. New York: Praeger. Mizuno, Y., Moneyham, L., Sowell, R. L., Demi, A. S., & Seals, B. F. (1998). Effects of sociodemographic factors, stage of illness, and perceived stigma on the identification of a support person among women with HIV infection. Sociological Spectrum, 18, 5-23. Quittner, A. L., Glueckauf, R. L., & Jackson, D. N. (1990). Chronic parenting stress: Moderating versus mediating effects of social support. Journal of Personality and Social Psychology, 59, 1266-1278.

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Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. Rybarczyk, B. D., Nyenhuis, D. L., Nicholas, J. J., Cash, S. M., & Kaiser, J. (1995). Body image, perceived social stigma, and the prediction of psychosocial adjustment to leg amputation. Rehabilitation Psychology, 40, 95-110. Sandler, A. G., Warren, S. H., & Raver, S. A. (1995). Grandparents as a source of support for parents of children with disabilities: A brief report. Mental Retardation, 33, 248-250. Schulz, R., & Tompkins, C. A. (1990). Life events and changes in social relationships: Examples, mechanisms, and measurement. Journal of Social and Clinical Psychology, 9, 69-77. Shapiro, J., & Tittle, K. (1986). Psychosocial adjustment of poor Mexican mothers of disabled and nondisabled children. American Journal of Orthopsychology, 56, 289-302.

Thoits, P. A. (1995). Stress, coping, and social support processes: Where are we? What next? Journal of Health and Social Behavior [Extra issue], pp. 53-79. Tyson, M. E., & Favell, J. E. (1988). Mental retardation in children. In V. B. Van Hasselt, P. S. Strain, & M. Hersen (Eds.), Handbook of developmental and physical disabilities (pp. 336-352). New York: Pergamon. Uchino, B. N., Cacioppo, J. T., & Kiecolt-Glaser, J. K. (1996). The relationship between social support and physiological processes: A review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin, 119, 488-531. Vadasy, P. F. (1987). Children’s health care: Brief report on grandparents of children with special needs—supports especially for grandparents. Journal of Children’s Health Care, 16, 21-23. Received February 27, 2000 Revision accepted July 31, 2000