Stigma: a Unique Source of Distress for Family Members of Individuals with Mental Illness

Abstract

To distinguish the impact of mental illness stigma from that of other negative caregiving experiences, this study examined the unique relationships between stigma and caregiver/family functioning. Adult relatives (n = 437) of individuals with mental illness completed questionnaires regarding caregiving experiences, distress, empowerment, and family functioning, as part of a larger study. Regression analyses examined the relationship between stigma and caregiver/family variables, while controlling for other negative caregiving experiences. Stigma was uniquely associated with caregiver distress, empowerment, and family functioning. Mental illness stigma is a potent source of distress for families and an important target of family services.

Introduction

Families and caregivers of individuals with serious mental illness (SMI) are significantly impacted by their relative’s illness. Studies indicate that having a close relative with a psychiatric illness can have negative effects on one’s work and social functioning, psychological and physical health, and on overall family functioning.^1–4 One significant source of distress for family members of individuals with SMI is stigma; most directly, “courtesy” stigma, or discrimination that is applied to individuals who are associated with persons who carry a stigmatized “mark,” in this case mental illness.⁵ In fact, stigma has been called “the most pervasive subjective burden faced by families of persons with mental illness.”^6(p205)

Family members of individuals with mental illness are stigmatized through a number of stereotypes and prejudices (e.g., family members are to blame for their relative’s mental illness, family members are crazy because they are associated with a mentally ill person, mental illness results from poor parenting, etc.). Stigma has social, emotional, and behavioral consequences for family members, including loss of support from family and friends, feelings of guilt and shame, and concealment of the SMI diagnosis from others.^5,7–9 Therefore, families coping with stigma may have unique needs in terms of support, education, and treatment.¹⁰ Research that examines the impact of stigma on caregiver and family functioning could inform targeted interventions to aid families coping with this insidious source of distress.

To better understand the effects of stigma on caregivers and families, it is necessary to distinguish it from the effects of other negative caregiving experiences,⁵ such as feelings of worry and loss, coping with an ill relative’s difficult behaviors, or feeling responsible for his/her safety. The unique impact of stigma on family members is not well characterized in the research literature. Preliminary evidence indicates that family members’ perceptions of stigma are significantly associated with distress. In studies of caregivers of adults with SMI, anticipated stigma from others has been associated with poorer physical well-being⁶ and lower levels of perceived social support.¹¹ In one study of 500 caregivers of adults with bipolar disorder, perceptions of public stigma were associated with symptoms of depression. Furthermore, the relationship between perceptions of public stigma and depression was mediated by low levels of social support coping and high levels of avoidance coping, and burden related to perceived public stigma was associated with low mastery and inadequate self-care in this sample.^12,13

Stress and coping theory¹⁴ is commonly used as a framework for empirical investigation of caregiving experiences. Per this theory, appraisal, or the evaluation of the negative/positive aspects of a stressor, mediates one’s reaction to the stressor. One component of appraisal is salience, or how much an experience stands out as prominent or important. Previous research has found that the salience of negative caregiving experiences is inversely correlated with health outcomes for caregivers of individuals with SMI.¹⁵

The present study examined the salience of stigma-related caregiving experiences in a sample of close relatives of adults/adolescents living with a mental illness, who were seeking support through the National Alliance on Mental Illness Family-to-Family (NAMI FTF) program. It was hypothesized that, controlling for the salience of other negative aspects of caregiving, the salience of stigma-related caregiving experiences would be positively associated with caregiver distress and negative family communication, and negatively associated with caregiver empowerment and family functioning.

Method

Participants

The current study used data from participants in a trial testing the efficacy of the NAMI FTF program.¹⁶ All procedures were preapproved by the University of Maryland Institutional Review Board. Recruitment took place between March 15, 2006 and September 23, 2009. Individuals 21 to 80 years of age were eligible if they desired enrollment in an FTF class regarding a living adult/adolescent family member or significant other and spoke English. Data for this paper came from baseline interviews of participants (n=437) enrolled in the trial. Participants were paid $15 each for completion of these interviews. Sixty-seven percent of the participants were white (n=293), 76% were women (n=332), and 97.9% had completed high school (n=428). The participants’ mean ± SD age was 52.1 ± 10.7 years. Regarding the participants’ family members with mental illness, their mean ± SD age of was 32.5 ± 14.6 years, and their mean ± SD number of previous hospitalizations was 0.6 ± 1.0. Descriptive information about the participants is presented in Table 1.

Table 1.

Participant demographics

Demographics (N = 437)	n/mean±SD	%
Age	52.1 ±10.7
Gender
Male	105	24.0%
Female	332	76.0%
Race
Asian	10	2.3%
Black	107	24.5%
Hispanic	8	1.8%
White	293	67.0%
Other	16	3.7%
Education
Less than high school	9	2.1%
High school graduate	54	12.3%
Some college	107	24.5%
College graduate	115	26.3%
Post graduate	152	34.8%
Family income
<$50,000	135	30.9%
>$50,000	302	69.1%
Relationship to consumer
Parent	268	61.3%
Child	30	6.9%
Sibling	52	11.9%
Spouse/partner	50	11.4%
Other kin	31	7.1%
Nonkin/friend	6	1.4%
Age of relative with mental illness	32.5 ± 14.6
Psychiatric hospitalization of relative with mental illness in past 6 months
Yes	159	36.4%
No	278	63.6%

Measures

Experiences of Caregiving Inventory (ECI)

Caregiver experiences, including stigma-related experiences, were measured with the ECI, a 66-item measure of the respondent’s appraisal of caregiving experiences in the past 30 days. Participants were asked, “During the past month, how often have you thought about…” regarding numerous caregiving experiences, answering on a Likert scale from “never” to “nearly always.” Eight of the ten ECI subscales measure the salience of various negative caregiving experiences, including stigma. These subscales together form the ECI-Negative scale; high scores on this scale predict negative psychological and physical health outcomes in caregivers of adults with SMI.^15,17 Examples of subscales that make up the ECI-Negative scale include the Difficult Behaviors subscale, which measures how often the caregiver thought about their relative engaging in specific behaviors (e.g., “Behaving in a reckless way,”), and the Dependency subscale, which lists items such as, “Feeling unable to leave (your relative) alone at home.” The Stigma subscale is comprised of the following items: “Covering up (your relative’s) illness,” “Feeling unable to tell anyone about (your relative’s) illness,” “Feeling unable to have visitors at home,” “The stigma of having a mentally ill relative,” and “How to explain (your relative’s) illness to others.” Thus, responses to these items measure how salient such concerns were to the respondent in the past month, via how often she/he has thought about them.

Family Empowerment Scale (FES)

The FES is a 34-item self-report questionnaire that prompts family members to rate 34 statements on a scale from “not true at all” to “very true.” The FES was used to examine family member empowerment in three domains: Family (i.e., empowerment with regard to managing situations related to the illness on a day-to-day basis in the home, including items such as, “I feel my family life is under control”), Service System (i.e., empowerment with regard to working with the health care system to obtain services for his/her relative, with items such as, “I understand how the service system for the mentally ill is organized”), and Community/Political (i.e., empowerment with regard to advocating for individuals with mental illness in general through communication with community members, policy makers, and legislative bodies, including items such as, “I get in touch with my legislators when important bills or issues concerning the mentally ill are pending”). These three subscales have demonstrated good internal consistency and test-retest reliability in parents of children with emotional disabilities; high scores on these scales were correlated with increased engagement in activities indicative of empowerment, such as serving on a task force or advocacy group concerned with mental health issues.¹⁸

Brief Symptom Inventory-18 (BSI-18)

Caregiver distress was assessed with the 18-item BSI, a measure of psychological distress in nonclinical populations that yields scores for Global psychological distress, Depression, and Anxiety. The scale consists of a list of symptoms, and prompts respondents to rate how much each symptom has bothered them in the past 7 days. The BSI-18 has good internal consistency and high convergent validity with other well-established symptom measures.¹⁹

Family Assessment Device (FAD)

Family functioning was assessed using the FAD-General Functioning and Problem-Solving subscales. The FAD is widely used to evaluate family functioning and family relations,²⁰ and has been well validated in nonclinical, psychiatric, and medical samples.^21,22 The Problem-Solving subscale assesses the family’s ability to engage in steps of effective problem-solving in maintain family functioning. The General Functioning subscale assesses overall family wellness. This subscale has particularly strong psychometric properties, and may be used as a summary score.^23,24

Family Problem-Solving and Communication (FPSC)

The FPSC is a 10-item questionnaire that assesses how families communicate when problems arise. Family members respond to the following prompt: “When our family struggles with problems or conflicts which upset us, I would describe my family in the following way.…” The prompt is followed by a list of statements, and respondents rate each statement as “False,” “Mostly False,” “Mostly True,” or “True.” The FPSC has two subscales; the present study only used the Incendiary Communication scale, which measures communication that escalates conflicts (e.g., “We yell and scream at each other”).²⁵

Data Analysis

To examine the unique contribution of the salience of stigma-related experiences, while controlling for salience of other negative caregiving experiences, all eight ECI-Negative subscales were entered as predictors in multiple regression analyses, which were run with the following dependent variables: BSI-Depression, BSI-Anxiety, BSI-Global Severity Index, FES-Family, FES-Service System, FES-Community/Political, FAD-General Functioning, and FAD-Problem-Solving.

Results

Frequencies of the categorical responses to each of the items of the ECI-Stigma scale are reported in Table 2. The percentage of family members who reported thinking about each of the stigma-related experiences in the scale at least “sometimes” ranged from 26.5 to 60.0%, while the percentage of family members who reported thinking about each of the items “often” or “nearly always” ranged from 9.8 to 27.7%.

Table 2.

Frequency of thoughts about stigma-related caregiving experiences: items from the ECI-Stigma Scale

In the past month, how often has the participant thought about:
Covering up the relative’s illness	n	%
0-never	233	53.3
1-rarely	88	20.1
2-sometimes	73	16.7
3-often	32	7.3
4-nearly always	11	2.5
Feeling unable to tell anyone of the illness	n	%
0-never	177	40.5
1-rarely	100	22.9
2-sometimes	90	20.6
3-often	52	11.9
4-nearly always	18	4.1
Feeling unable to have visitors at home	n	%
0-never	201	46.2
1-rarely	90	20.7
2-sometimes	65	14.9
3-often	53	12.2
4-nearly always	26	6.0
Feeling the stigma of having a mentally ill relative	n	%
0-never	131	30.1
1-rarely	110	25.3
2-sometimes	94	21.6
3-often	63	14.5
4-nearly always	37	8.5
How to explain the relative’s illness to others	n	%
0-never	72	16.5
1-rarely	99	22.7
2-sometimes	144	33.0
3-often	89	20.4
4-nearly always	32	7.3

ECI Experiences of Caregiving Inventory

Results of the regression analyses are presented in Table 3. Controlling for the other ECI-Negative subscales, the ECI-Stigma subscale was significantly associated with caregiver distress (BSI-Anxiety, BSI-Depression, BSI-Global), caregiver empowerment (FES-Family, FES-Service System, and FES-Community/Political), and general family functioning (FAD-General Functioning). Associations were in theoretically expected directions. The ECI-Stigma subscale was not uniquely associated with negative family communication (FPSC-Incendiary Communication) or family problem-solving (FAD-Problem-Solving).

Table 3.

Multiple regression of ECI-Negative scales on caregiver and family variables

	BSI-Anxiety			BSI-Depression			BSI-Global Severity
Overall model	F(8,416) = 10.66	p<.0001	R2 = .170	F(8,416) = 11.05	p<.0001	R2 = .175	F(8,416) = 11.45	p<.0001	R2 = .181
	ß(SE)	t	p	ß(SE)	t	p	ß(SE)	t	p
EC1 Difficult Behavior scale	0.37(0.10)	3.71	<.001	0.37(0.10)	3.71	<.001	0.34(0.10)	3.39	<.001
ECI-Negative Symptom scale	−0.04(0.12)	−.31	.756	−0.04(0.12)	−0.31	.756	0.05(0.12)	0.39	.694
ECI-Stigma scale	0.34(0.13)	2.63	.009	0.34(0.13)	2.63	.009	0.26(0.13)	2.06	.040
ECI Problem w Service scale	−0.01(0.08)	−0.10	.924	−0.01(0.08)	−0.10	.924	−0.09(0.08)	−1.16	.247
ECI Effect on Family scale	0.00(0.10)	0.04	.970	0.00(0.10)	0.04	.970	0.02(0.10)	0.18	.855
ECI Need of Backup scale	−0.12(0.12)	−1.04	.300	−0.12(0.12)	−1.04	.300	−0.13(0.12)	−1.14	.254
ECI Dependency scale	0.21(0.15)	1.36	.175	0.21(0.15)	1.36	.175	0.39(0.15)	2.52	.012
ECI Loss scale	0.20(0.11)	1.86	.063	0.20(0.11)	1.86	.063	0.20(0.11)	1.89	.060
	FAD-Gcneral			FAD-Problem Solving			FES-Family
Overall model	F(8,412) = 11.75	p<.0001	R2 = .186	F(8,409) = 5.49	p<.0001	R2 = .097	F(8,423) = 5.89	p<.0001	R2 = .100
	ß(SE)	t	p	ß(SE)	t	p	ß(SE)	t	p
ECI Difficult Behavior scale	0.11(0.06)	1.71	.088	0.04(0.03)	1.38	.169	−0.02(0.01)	−3.51	<.001
ECI-Negative Symptom scale	0.07(0.08)	0.98	.327	0.01(0.04)	0.28	.781	−0.01(0.01)	−1.17	.242
ECI-Stigma scale	0.27(0.08)	3.27	.001	0.06(0.04)	1.45	.149	−0.02(0.01)	−2.89	.004
ECI Problem w Service scale	−0.18(0.05)	−3.56	<.001	−0.06(0.02)	−2.75	.006	0.01(0.01)	2.12	.035
ECI Effect on Family scale	0.31(0.06)	4.92	<.001	0.11(0.03)	3.69	<.001	0.00(0.01)	0.21	.832
ECI Need of Backup scale	0.01(0.07)	0.17	.866	0.02(0.03)	0.71	.478	0.00(0.01)	0.35	.726
ECI Dependency scale	−0.17(0.10)	−1.71	.087	−0.08(0.05)	−1.68	.094	0.03(0.01)	2.64	.008
ECI Loss scale	0.05(0.07)	0.69	.491	0.02(0.03)	0.53	.595	−0.01(0.01)	−0.77	.444
	FES-Service			FES-Community			FPSC-Incendiary
Overall model	F(8,423)=8.00	p<.0001	R2 = .115	F(8,423) = 4.47	p<.0001	R2 = .078	F(8,412) = 10.53	p<.0001	R2 = .170
	ß(SE)	t	p	ß(SE)	t	p	ß(SE)	t	p
ECI Difficult Behavior scale	−0.02(0.01)	−1.94	.053	−0.01(0.01)	−1.16	.245	0.16(0.03)	4.88	<.001
ECI-Negative Symptom scale	0.01(0.01)	1.07	.286	−0.01(0.01)	−0.69	.491	−0.04(0.04)	−1.13	.259
ECI-Stigma scale	−0.03(0.01)	−2.73	.007	−0.03(0.01)	−3.21	.001	0.03(0.04)	0.76	.446
ECI Problem w Service scale	0.02(0.01)	3.03	.003	0.02(0.01)	3.34	<.001	−0.08(.03)	−3.30	.001
ECI Effect on Family scale	0.01(0.01)	0.73	.465	0.02(0.01)	3.11	.002	0.12(0.03)	3.89	<.001
ECI Need of Backup scale	−0.01(0.01)	−0.68	.498	0.00(0.01)	0.45	.656	−0.01(0.04)	−0.34	.732
ECI Dependency scale	0.07(0.01)	5.38	<.001	0.02(0.01)	1.42	.155	−0.01(0.05)	−0.19	.853
ECI Loss scale	−0.02(0.01)	−1.82	.070	−0.01(0.01)	−1.62	.106	−0.01(0.04)	−0.41	.684

ECI Experience of Caregiving Inventory, BSl Brief Symptom Inventory, FAD Family Assessment Device, FES Family Empowerment Scale, FPSC Family Problem-Solving and Communication

Discussion

In a sample of family members of adults/adolescents with mental illness seeking support through the NAMI FTF program, close to two thirds of participants reported thinking about stigma-related caregiving experiences at least some of the time. That is, stigma-related experiences were salient for this sample. Frequency of thoughts about stigma-related experiences was uniquely associated with caregiver distress, even when taking into account frequency of thoughts about other strong and established sources of caregiver burden (e.g., the ill relative’s difficult behaviors, the ill relative’s dependency on the caregiver). In other words, family members, who likely had many stressors related to caregiving that could occupy their thoughts, were still thinking about stigma-related experiences, and these stigma-related thoughts were associated with distress. This finding indicates that stigmatization is a salient stressor for caregivers and an important target of caregiver support services.

The salience of stigma-related caregiving experiences was inversely associated with caregiver empowerment, an important construct related to active coping, help-seeking, and resilience.¹⁸ This suggests that stigma-related thoughts among caregivers may be a barrier to their empowerment and optimal coping. Future studies could more closely examine how stigma and empowerment are related. It is possible that shame-proneness or low self-efficacy might underlie this link; i.e., a family member who is prone to shame or has a poor self-image may be more likely to both (1) ruminate on past or anticipated stigma experiences and (2) feel less confident in managing situations related to their relative’s mental illness. Alternatively, given that a number of the ECI-Stigma subscale items are related to concealment of the mental illness from others, high scores on this subscale may be related to sensitivity to judgment from others, which may also be related to empowerment. Further investigation into the relationship between family member stigma and empowerment could inform a potent intervention that could target both.

Finally, the salience of stigma-related experiences was inversely related to general family functioning, but unrelated to family problem-solving or incendiary communication. The general family functioning scale includes several items related to mutual provision of emotional support and acceptance (e.g., “We confide in each other,” and “In times of crisis, we turn to each other for support.”) These family characteristics might provide a destigmatizing environment that encourages reassurance, openness, and sharing, and discourages shame and secrecy. Further research could examine what specific stigma-related caregiving experiences (e.g., stigma perceived from others, self-stigma, etc.) are related to family functioning, and whether emotional openness in the family environment contributes to this link.

In the present study, the stigma measure focused on frequency of family members’ thoughts about stigma-related experiences, such as hiding their relative’s mental illness or not knowing how to explain it to others. Importantly, this measure does not examine how often family members experienced stigma-related stressors, only how salient such stressors were. Thus, higher scores might be related to high frequency of these experiences for some participants, or high salience of relatively rare experiences, or fears of such experiences, for other participants. Future studies should include measures of stigma-related experiences that caregivers have actually encountered. These could include perceived discrimination from others (e.g., family-blaming remarks from friends, extended family, or health professionals), as well as behaviors that family members engaged in response to anticipated stigma (e.g., denying visitors to their home because of the presence of a relative with mental illness). Additionally, future studies could help to determine how the salience of stigma-related caregiving experiences might be associated with other stigma-related outcomes, such as cognitively internalized stigma, emotional responses such as guilt or shame, or coping responses such as help-seeking.

It is important to note that the sample in the present study comprised family members seeking support through NAMI FTF, a peer-led community program that was developed by family members. It may be that participants in the present study were seeking the validation and support of peers through this program because they experienced a heightened awareness of or exposure to stigmatization and associated distress. Thus, it is unclear whether these findings are generalizable to the broader population of family members of individuals with mental illness; this requires further empirical investigation.

Other limitations of the present study should be noted. First, the data examined here is cross-sectional; therefore, causal conclusions about the relationship between stigma and caregiver/family variables cannot be made. Secondly, the effect sizes associated with the unique contributions of the stigma subscale to caregiver/family variables were very small, and given the relatively large sample size, the statistically significant relationships between stigma and outcomes reported here may be the result of Type I error. Setting aside this possibility, a small effect size is not unexpected: caregiver distress is likely the result of multiple interactive factors, of which stigma is only one. Additionally, small effects are still potentially of clinical importance—an intervention that impacts a family member’s experience of stigma could have ripple effects on many other related outcomes, such as self-efficacy and help-seeking, which could then cumulatively impact caregiver/family variables such as distress and empowerment. Additional studies employing more multifaceted and in-depth measures of family member stigma, and its emotional and behavioral correlates, are necessary to validate the findings in the present study and to further examine the impact of stigma on caregiver/family member outcomes.

Implications for Behavioral Health

In a support-seeking sample of family members of individuals with mental illness, frequency of thoughts about stigma-related caregiving experiences was inversely associated with caregiver mental health and empowerment, even when controlling for salience of other negative caregiving experiences. These findings highlight that stigma is a potent source of distress for caregivers; this has several clinical implications. Professionals and peers working with family members should directly inquire about family member experiences with stigma as part of routine assessments. Professional- and peer-led psychoeducation and support groups for family members need to include material that normalizes the stigmatization experience, dispels false negative stereotypes directed at family, and helps participants respond to stigma in empowering ways. Cognitive strategies could help family members problem-solve, but not ruminate on, experienced or feared stigma experiences. Additionally, strength-based approaches to family intervention could focus on reinforcing emotionally supportive relationships in the family as a strategy to reduce the harm caused by mental illness stigma. Targeted assessment and intervention that aims to reduce family member stigma could provide a powerful way to increase empowerment and decrease distress.