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Families as Caregivers
A Historical Perspective
Locus of care for the mentally ill
Colonial Period (17th Century) Families on their own—no medication, doctors,
support services Family devastated
Predominant belief about etiology of mental illness: mentally ill people are being punished for their wickedness; they must deserve their fate
Patients’ suffering aggravated by this societal belief
Locus of care for the mentally ill
Latter part of 18th Century Progressive forces lead to establishment of first
general hospital in America (Pennsylvania Hospital) where mentally ill were treated
Virginia built first asylum exclusively for the mentally ill
Locus of care for the mentally ill
First quarter of 19th Century Special institutions for “insane” established in 8
states Majority of mentally ill could not get into these
institutions, wound up in poorhouses In mid-century, Dorothea Dix proposed public
facilities for all states—to provide humane and enlightened care
Facilities located in rural areas, far from patients’ families
Locus of care for the mentally ill
By 1955 “deinstitutionalization” began, due to: Discovery of first anti-psychotic drug
(Thorazine) Increasing attention to protecting the civil
rights of patients Growing feeling that the environment in large
institutions made the problems of the mentally ill worse (institutionalization)
Assumptions underlying deinstitutionalization Community care is better for mentally ill
patients Communities could and were willing to
assume responsibility for providing care
Results of deinstitutionalization
Population of state hospitals was reduced from 558,002 (in 1955) to 193,436 (in 1976).
Communities were not ready for the influx of so many severely and chronically mentally ill patients. Lack of planning Lack of clarity as to what level of government
would be responsible
Results of deinstitutionalization
Many mental health professionals resisted working with chronic patients
Patients were not prepared for community living Services inadequate to cope with patient needs,
lack of access to services Service fragmentation, lack of coordination Communities resisted Families experienced severe stress
Discharged patients
65% of patients returned home: 35-40% with parents 35-40% with spouses
20-25% went to live in boarding homes or SRO’s (single-room occupancy dwellings)
Result of deinstitutionalization for families Families replaced ward staff of state
hospitals Families often destroyed by the stresses of
caring for gravely disabled family members
Theories of etiology
Schizophrenogenic mother Fromm-Reichmann (1948) theory:
schizophrenia is due to unconscious rejection of mother for her child
Double Bind Hypothesis Bateson (1956): Conflicting communication
within the family creates schizophrenia, which is seen as a learned communication pattern
Theories of etiology
Marital Schism and Skew Lidz (1965): Schizophrenia due to living in
families in which there is severe emotional conflict
Hierarchical Incongruity Haley (1980), Madanes (1981):
Schizophrenia/bizarre behavior is attempt of young person to hold family together
Theories of etiology
Transactional Thought Disorder Wynne (1978): Schizophrenia caused by
communication problems in family Biological and Genetic Explanations
Torrey (1983): Mental illnesses are brain diseases—structural or functional in nature
Such explanations of mental illness relieve the family of guilt
Theories of etiology
Stress Theories Brown, Birley, and Wing (1972), Vaughn and
Leff (1981): Level of expressed emotion in family can influence course of mental illness
Stress theorists usually assume that stress interacts with a biological predisposition to cause mental illness (stress-diathesis theory)
Stress theories underlie most psychoeducational approaches to helping families
Consequences of mental illness to the family Families feel underprivileged and marginal,
have need to conceal the mental illness (Clausen & Yarrow, 1955)
Families find bizarre behavior most burdensome—hurting others, damaging property, drinking
Consequences of mental illness to the family Families feel: uncertain about how to deal with
patient’s inactivity, confused about unpredictable behavior, worries about patient’s future, anxiety, guilt, depression, disappointment, frustration, anger (Creer and Wing, 1974)
Burdens of caring for mentally ill are universal—regardless of social class, education, age, or sex of caregiver (Doll, 1976)
Consequences of mental illness to the family Families live under constant tension, always
on guard, nervous; they worry about neglecting other children; parents’ marriage suffers (Hatfield, 1978)
Responsiveness of mental health practitioners to family situation Depends on practitioners’ beliefs about
etiology Family therapy approaches that believe
mental illness is caused by family dysfunction can worsen guilt and not give the practical help that is needed.
When families were asked what they needed, they responded: Hatfield, 1979 study
Help in understanding patient’s symptoms Suggestions on how to cope with patient’s
behavior Opportunities to meet with other families of
mentally ill Respite care Different living arrangement for patient
More effective approaches to working with families: Supportive family counseling (Bernheim,
1982): Recognize that it’s stressful to live with mental
illness Reduce sense of helplessness and build self-
esteem Provide information Develop management skills Recognize that others in the family have needs
too