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The article distills a radio broadcast, “Hope for Family Caregivers Caring for Family Members with Schizophrenia”, which discusses family caregiving in Canada’s mental healthcare system. Public policy signals hope for family caregivers caring for family members with schizophrenia, a treatable illness. The hope stems from the importance increasingly accorded to meaningful participation by family caregivers in developing recovery-oriented mental health services. But public policy also signals failure of the mental health system and highlights its inherent inequities.
Public policy presumes that provincial governments will institutionalize ‘family friendliness’. Propelled by pressures on public funds, professions and government-funded organizations cite family caregiving to support their claims for more funding for themselves and their services. The competition for direct funding for family caregiving challenges family caregivers caring for family members living at home.
Stigma regarding schizophrenia and mental illness in general persists within the healthcare professions. Stigma also results in discrimination that deprives persons living with schizophrenia of meaningful work, workplace accommodation, safe and affordable housing, appropriate mental health services, and adequate income. A stigma of the past, with particularly negative consequences, erroneously labeled schizophrenia as a disorder without hope. We now know that recovery and therefore hope are possible.
The eugenics movement of the first three quarters of the 20th century bequeathed to Canada a social model of disability particularly unfavourable to families as well as family caregivers. It held that some families are subnormal and that the weight of the social problems associated with them poses too much of a burden on social services and government. Today’s social model of disability holds that the agent of the disability is less a matter of mental illness and more one of society’s responding poorly to people with disabilities. But today, an especially harsh social disability arises for persons with schizophrenia who are prisoners of the criminal justice system. Up to 50 percent or more of prisoners of the criminal justice system have diagnosable mental illnesses. A major challenge for them and their family caregivers is the inadequacy of mental health services in the confines of prison wards.
Progressive though the current social model of disability is, it may not yet be sufficiently sensitive to the needs of persons who struggle with disadvantages resulting from stigma; nor is it yet sufficiently cognizant of the value of family caregiving.
High-risk behaviours create worrying challenges for family caregivers caring for family members with schizophrenia. Yet the mental illness is not always the greatest challenge. This arises with the physical, psychological and financial stress and strains for family caregivers. To augment these, families may encounter difficulties in getting the help and services they need and seek.
Family caregivers’ challenges cause them high levels of burden, distress, stress, physical health problems, anxiety, depression, lowered levels of life satisfaction, and diminished quality of life. They highlight their difficulties with the systems for mental healthcare, justice, and law, and with government. They are at greater risk of physical health problems and depression than non-family caregivers or family caregivers caring for persons without mental illness.
In meeting family caregivers’ challenges, the overarching, persisting need is for authentic voice for family caregiving in the mental health system and for meaningful engagement of family caregivers in the planning, delivery and evaluation of mental health services. Given that family caregiving is saving public money, at a time of financial pressure and of public concerns about the effectiveness of public administration, family caregiving is a strongly positive force for moving our society decisively forward.
Dr. Summerville’s message for family caregivers caring for schizophrenia comprises holding on to hope, avoiding pathologizing the family member, considering their caregiving, joining a support group, and taking care of their own mental health.
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