Caregiver interventions are not enough; families with mentally ill members also need help
Listening to older sisters of mentally ill siblings discuss their mothers' difficult caregiving experiences made Case Western Reserve University co-investigator M. Jane Suresky wonder if something important about families was missed in a prior study that focused on women caregivers of mentally ill family members.
To find out, Suresky, DNP, PMHCNS, BC, recommended that data be reexamined from a 2008 Frances Payne Bolton School of Nursing study of 60 women who cared for a family member with mental illness. The participants, who were between 23 and 65 years old, cared for a family member diagnosed with bipolar disorder (45 percent), schizophrenia (45 percent), depression (8 percent) or panic disorder (2 percent).
After reviewing the data, Suresky's hunch was right.
"We were so focused the first time on the women family member that we missed the impact of the illness on the family" Suresky said.
The follow-up study examined vulnerability (such as diagnosis type and time since diagnosed), risk (such as stigma by association, caregiver strain and client dependence) and protective factors (such as sense of coherence and resourcefulness). That information was correlated with data on how well a family functioned.
How long the family member had been diagnosed with the mental illness had no bearing on the family's dysfunction. However, a diagnosis of depressive disorder was more strongly associated with family disruption than diagnoses of bipolar disorder or schizophrenia.
Greater perceived stigma by association, caregiver strain and client dependence were significantly associated with greater family disruption. Meanwhile, the researchers found that families functioned better when caregivers had a greater sense of coherence and resourcefulness.
The data analysis pointed to the need for family interventions, according to Suresky, assistant professor of psychiatric and mental health nursing at the nursing school.
"We realized that focusing on one family member may be insufficient," she said.
Suresky said life would be easier if everyone in the family supported the caregiver.
Many families cope with such challenges. According to the 2010 U. S. Census, 45.9 million people, or about 20 percent of the population 18 years and older, have a diagnosed mental illness.
Researchers found that family turmoil was greatest for caregivers of someone with depression and bipolar disorder—conditions that kept families on alert for potential suicide attempts. Individuals with schizophrenia presented less strain and stress as the family learned to cope with the illness over time.
What's been missing in previous studies, Suresky said, is understanding the impact on family function and the level of the caregiver's shame and guilt of having a family member with a mental illness. The researchers reported that shame can prevent caregivers and family members from seeking professional help for themselves, and instead can become isolated.
The data revealed that well-functioning and cohesive families provided greater support for caregivers. Conversely, family dysfunction mainly occurred where primary caregivers received little support.
Another finding was that stress and strain from families not working as a group impacted the caregivers. Dysfunctional families elevated strain, feelings of more stigma by having a mental illness in a family member and dependence of the cared-for family member on the primary caregiver.
Suresky proposed that interventions and support for all family members—and not just the primary caregiver—might help build a cohesive, supportive team that functions well for the mentally ill family member and all involved.
Suresky was the first author on this study, "Factors Affecting Disruption in Families of Adults with Mental Illness," published by Perspectives in Psychiatric Care.