Friday, 14 January 2005 - 8:00 AM

This presentation is part of: Families Coping with Severe Mental Illness

Siblings, Interrupted: The Integration of Mental Illness into the Life Course of Adult Sibling Relationships

Purpose: There is growing recognition that adult siblings act as informal caregivers for people diagnosed with mental illnesses and increasingly require support for the caregiving role. Yet, our knowledge of their needs is limited largely to what we have learned by transferring the construct of caregiving burden from research with parents to research with siblings. The purpose of this qualitative study was to address this limitation by exploring what concepts were relevant to the ways siblings understood the experience of having a relative with a mental illness, and how they described the implications for their lives and family functioning.

Method: Twenty adults were recruited for the study (10 men, 10 women). A semi-structured interview was conducted for 1 hour to explore participant perspectives on how a sibling’s mental illness affected roles and expectations in the family, and the sibling dyad relationship. The interviews were audio-taped and transcribed verbatim for coding and categorizing in the NUD*IST software program. Themes were extracted and validated through negative case analysis, peer debriefing and member checking.

Results: The narratives revealed that sibling relationships were consistently interrupted by perceived loss of the diagnosed sibling to symptoms of mental illness and/or side-effects of medications. Respondents described these interruptions as times of grief and anxiety. Thematic analysis revealed that undiagnosed siblings responded to these periods in one of two ways. One group of siblings (n=9; 7 women, 2 men) were identified as “suspended siblings”. These respondents described ongoing negative feelings attached to past and current harm resulting from family responses to the disruption of the sibling’s illness. Suspended siblings indicated that they experienced no relief from the grief and anxiety. During periods when their diagnosed siblings were more able to participate in the relationship, they were wary of re-establishing ties and, in some cases, resentful of the expectation. A second group of siblings (n=11; 3 women, 8 men) were identified as “reinstated siblings”. These respondents described themselves and their families as having developed sufficient capacity to address the shifting presentation of the diagnosed sibling. Reinstated siblings could name specific factors that supported this belief: flexibility of primary caregiver role; firm, openly discussed boundaries; social support for their role as caregivers; and the perception of choice and reciprocity in the relationship with the diagnosed sibling. Suspended siblings did not describe having these structures and strategies in place. Respondents fit the suspended sibling identity in all cases where there was a history of family violence perpetrated by the diagnosed sibling.

Implications for Practice: This study suggests an expanded framework for family support and caregiving in mental illness, particularly for siblings. Useful additions to current models may include: evaluation of the impact of interruptions in sibling relationships; identification of strategies for development of well-defined, supported caregiving roles within and across generations; awareness of connections between gendered expectations for caregiving and responses to the sibling caregiver role; and attention to long-term effects of family violence.

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