Saturday, 15 January 2005 - 12:00 PM

This presentation is part of: Poster Session II

The Meaning of Mental Illness: Thematic Analysis of African American Caregivers

Purpose: The role of the family has become increasingly important in providing care to persons with serious mental illness. Though existing studies provide insight into the dynamics of family caregiving in mental health care, there remains a gap in our understanding of the experience of ethnic minority caregivers. This is particularly salient given low levels of participation by African Americans in family-based interventions. One important direction for inquiry may lie in the form that social supports take in the African American community. Additionally, the meaning of mental illness for this population and perceived caregiving responsibilities associated with that meaning might be different. Therefore, this study addresses this gap by examining the unique experience and perceived mental health service needs for African-American families caregiving for a member with serious mental illness.

Methods: Focus groups were conducted with 40 African American caregivers of family members with mental illness (FMMI). Subjects were recruited through advertisements at mental health centers, social service agencies, clinics, and churches and referrals from social workers, clergy, and other family members. The sample consisted of primarily parent caregivers, generally mothers, with minimally weekly contact with their FMMI. Most FMMI were diagnosed with schizophrenia, bipolar disorder, or dually diagnosed with substance abuse. Eight focus groups, averaging 1.5 hours in length, were conducted using an open-ended semi-structured protocol. Responses were elicited on family’s attitude about mental illness, caregiving roles, and resources. Groups were audio-taped and transcribed. Using N’Vivo, responses were coded and a thematic analysis was conducted on the data.

Results: Family’s reported that although they were aware that their FMMI had “a brain disorder”, they still felt stigmatized by the diagnosis and related behaviors. Families tended to attribute the illness to causes like poor decision-making, alcohol or drugs, faulty relationships, and general emotional stressors. In terms of caregiving, most centered on provision of daily living, medical, transportation, financial, and housing assistance. Siblings and non-parent relatives were more likely to report strain than parents. Level of strain was also related to the family’s pre-existing roles and expectations for each other. Where FMMI had accessed services, caregivers generally reported satisfaction, identifying mental health providers as a useful resource. Where FMMI had not accessed mental health care regularly or at all, caregivers found helpful informal support networks such as other family members, friends, and religious resources.

Implications for Practice: Though limited to the experience of a non-representative group of African American caregivers, results of this study suggest that how these families construct meaning around their experience and their loved one’s illness may be related to help-seeking and service use. Many families did not accept the medical model of illness and thus did not perceive a need for mental health services. Consequently, access of mental health services was limited in favor of other supportive services. To facilitate improved service use, future research needs to focus on the specification of theoretical models that takes into consideration the cultural norms of these families,their unique attitudes, and experiences with mental illness.

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