Perceived stigma and depression among caregivers of patients with bipolar disorder

This study investigates the associations between perceived stigma, depressive symptoms and coping among caregivers of people withbipolar disorder. Caregivers of 500 people with DSM–IVbipolar disorder responded to measures of these constructsat study entry. Patients’ clinical and functional statuswere evaluated within 30 days of the caregiver assessment.Perceived stigma was positively associated with caregiver depressivesymptoms, controlling for patient status and socio-demographic factors. Social support and avoidance coping accounted for63% of the relationship between caregiver stigma and depression.Results suggest that caregivers’ perceptions of stigmamay negatively affect their mental health by reducing theircoping effectiveness.

INTRODUCTION

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INTRODUCTION

Studies have shown that 43% to 92% of caregivers of people withmental illness report feeling stigmatised (e.g. Struening et al, 2001)and that perceived stigma is associated with reports of depressivesymptoms (e.g. Phelan et al, 1998). This study evaluates theroles of caregiver social support and avoidance coping in mediatinga hypothesised association between perceived stigma and depressivesymptoms among caregivers of patients with bipolar disorder.Because perceived stigma has been associated with withdrawal from supports (e.g. Fadden et al, 1987), and social supportbuffers against recurrence of depression (e.g. Brown & Harris, 1978),we hypothesised that social support might mediate the associationbetween perceived stigma and depression. Similarly, because avoidance coping has been associated with depression (Powers et al, 2002), we hypothesised that it might mediate the association betweenstigma and depression. We predicted that perceived stigma andavoidance coping would be positively associated – andsocial support inversely associated – with depressivesymptoms after controlling for socio-demographic factors and patient clinical status.

METHOD

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METHOD

Participants were the primary caregivers of 500 patients withbipolar disorder enrolled in the Systematic Treatment EnhancementProgram for Bipolar Disorder (Sachs et al, 2003). All patientsrecruited from 1 August 2002 through 31 December 2003 at eachof eight sites (n=778) were invited to participate; 676 (87%)agreed to do so and identified their primary caregiver usingthe method established by Pollak & Perlick (1991). Almostthree-quarters (74%; n=500) of the 676 caregivers invited toparticipate agreed. Caregivers who participated did not differstatistically from those who declined on age, gender, education,marital status, relationship to the patient and co-residence.

Patient lifetime diagnosis was based on a standardised AffectiveDisorder Evaluation (Sachs et al, 2003), comprising a modifiedversion of the mood and psychosis modules from the StructuredClinical Interview for DSM–IV diagnosis; First et al, 1996)and the Mini International Neuropsychiatric Interview (Sheehan et al, 1998).The Clinical Monitoring Form, a semi-structured interview, wasadministered by the treating psychiatrist to evaluate the presenceor absence of a DSM–IV episode of affective illness withinthe past 30 days (Sachs et al, 2003). The Global Assessmentof Functioning (GAF) score (American Psychiatric Association,1994) represented patients’ functional status over this time frame. Caregivers were interviewed within 30 days (mean6 days, s.d.=25.5, median 3.0) of a patient assessment by trainedresearch assistants.

Caregiver perceptions of stigma were assessed using the Devaluationof Consumer Families Scale (Struening et al, 2001), a seven-itemLikert scale (rating of statements such as ‘Most peoplelook down on families that have a member who is mentally ill’),summed to yield a total stigma score (Cronbach’s ${alpha}$ =0.80),with higher scores indicating greater stigma. Caregiver depressivesymptoms were assessed using the Center for EpidemiologicalStudies – Depression scale (CES–D; Radloff, 1977) (Cronbach’s ${alpha}$ =0.90). Avoidance coping was assessed usingthe sub-scale from Scazufca & Kuipers’s (1999) measure.Items describe a cognitive or behavioural strategy for copingwith a stressful event, e.g. ‘Avoided other people’.Caregivers rated how often they used each strategy to handlethe most stressful situation with their relative in the pastmonth on five-point Likert scales, with higher scores indicatinghigher avoidance. The 11-item Abbreviated Duke Social SupportIndex (ADSSI; Koenig et al, 1993) was used to measure subjectivesupport and social interaction; higher numbers representedhigher levels of support.

RESULTS

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RESULTS

Using a hierarchical regression model, the CES–D was regressedon sociodemographic variables (step 1), caregiver stigma (step2), patient clinical status (step 3) and hypothetical mediatingvariables (steps 4, 5) (see data supplement to online versionof this paper). Caregiver stigma was significantly and positivelyassociated with CES–D score and contributed an additional4% variance after controlling for socio-demographic factors (F change_1,337=14.09, P<0.001). Patient status was notsignificantly associated with CES–D score. The unique contribution of stigma was reduced by over 50% with the entryof social support measures (step 4), indicating these explainedabout half of the contribution of stigma to CES–D score.The addition of social support and avoidance coping measures(step 5) increased the variance explained by 18% and 6% respectively.The combined effect of social support and avoidance copingexplained nearly two-thirds (63%) of the contribution of stigmato CES–D score. The significant associations of the socialsupport measures and avoidance coping with CES–D scoreand resulting decrease in the associations between stigma andCES–D, coupled with significant associations betweenstigma and social support (subjective support, Pearson r=–0.24;instrumental support, Pearson r=–0.19) and between stigmaand avoidance coping (Pearson r=0.18; all P values <0.001)support the hypothesised mediating effects of social supportand avoidance coping in the relationship between perceived stigmaand depressive symptoms (Barron & Kenney, 1986). Exploratoryanalyses found that the overall pattern of associations betweencaregiver stigma, support and coping, and CES–D scoresdid not differ for caregivers in different age groups, of differentgender and with different relationships to the patient.

DISCUSSION

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DISCUSSION

Our finding that greater perceptions of stigma towards caregiverswere associated with significantly higher levels of depressivesymptoms suggests that in addition to posing a barrier to therecovery of people with mental illness, stigma erodes the moraleof the family members who help care for them. The finding thatsocial support and avoidance coping together largely explainedthe association between stigma and depression offers a plausible explanation for the depressive symptoms commonly reported byup to 40% of caregivers of people with mental illness (Dyck et al, 1999): caregivers may retreat from social support and adopt avoidancecoping in order to fend off anticipated rejection and/or embarrassment.Because social support is a well-established buffer againstrecurrence of depression, withdrawal from potential supportersas an adaptation to stigmatisation illustrates the double jeopardyconfronting caregivers of patients with mental illness.

Because this study uses cross-sectional data we cannot makecausal inferences. Although it is possible that stigmatisationmight engender feelings of hopelessness, it is also possiblethat caregiver depression in bipolar disorder is at least inpart due to genetic transmission of this illness. However,recurrence of depression has been linked to psychosocial stressorssuch as negative life events (Johnson & Roberts, 1995) and caregiving strain (Russo et al, 1995), and contendingwith social rejection and attendant feelings of shame and embarrassmentconstitutes a major caregiving strain (Perlick et al, 2004).Longitudinal studies including caregivers with and without ahistory of affective disorder, and using clinically validatedmeasures of depression, are needed to disentangle the relativecontributions of pre-existing affective illness and societallybased discrimination to caregiver depression. The potentialfor recurrence of depressive symptoms among the family membersof patients with bipolar disorder in relation to the stressesof mental illness stigma underscores the seriousness of thissocial problem and the need for investigations of effectiveinterventions to enhance caregiver coping.

REFERENCES

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