Family burden and family stigma in major mental illness.

Abstract

Mental illnesses are unique in their etiological attributions. They are categories of disorder treated by medical means but viewed as induced by the behavior of others. Despite increasing evidence of diathesis, on the one hand, and on the other, a wide range of nonfamilial environmental stressors that may trigger decompensation (Day et at., 1987), families continue to be viewed as primary toxic agents, particularly in schizophrenia. The hard data emerging from the replications of the expressed emotion (EE) research (Vaughn, Snyder, Jones, Freeman, & Falloon, 1984) and the documented success of correlative psychoeducational interventions (Hogarty et al., 1986) have shifted the emphasis from etiology to potential precipitants of relapse. The EE investigators have cautioned that their research neither implies causality nor explains the decompensation of patients who have little or no contact with families, so that extrafamilial environmental events must be explored (Vaughn et al., 1984). Indeed, many families are perturbed by the implication that, as primary targets of EE research and behavioral training, they may be viewed as the major caregivers of deinstitutionalized patients (Hatfield, 1987). This is an undesired social role with the potential for creating an at-risk population among aging parents, young children, and other relatives whose mental health may be affected by living with the stresses and sorrows occasioned by the psychotic disorder of a family member (Lefley, 1987b). The question of predictive deviance in families of persons with schizophrenia continues to be an issue (Goldstein, 1985) although the research data invariably demonstrate that investigator-defined patterns of deviance are in no way modal or normative in this population. In the EE research, moreover, the calm, benign affects of low EE rather than the critical overinvolvement of high EE are the prevailing worldwide norms among families of schizophrenic individuals (Jenkins, Karno, de la Selva, & Santana, 1986; Left& Vaughn, 1985), a finding that tends to contradict stereotypes of schizophrenogenesis. Over the years, numerous authors have cautioned that deviance in families, when observed, might be reactive to the experience of living with an individual who has a psychotic disorder. The reactive viewpoint, however, has focused largely on sympathetic or isomorphic responses to the cognitive deficits and aberrant communicative styles of the schizophrenic family member, rather than on the catastrophic impact of mental illness on the family system. Although there are claims of"epistemological confusion" among those who infer directionality from systems-orielated approaches (Dell, 1980), the organizational/systems model, when contrasted with the biologically based stress/ vulnerability paradigm (Rohrbaugh, 1983), nevertheless assigns a functional value to the patient's symptoms and views them as precipitated and maintained for familial homeostasis. In contrast, a conceptualization of families of the mentally ill in terms of a model of stress, coping, and adaptation (Hatfield & Lefley, 1987) views familial behaviors as coping strategies. These represent modes of adjustment, both positive and negative, to the chronic strain of long-term psychosis and its attendant patterns of crises and remissions.