Purpose: Understanding the dynamics of caregiving is essential to providing effective support to individuals and families living with serious mental illness. Yet, research in this area has typically explored caregiving exclusively from the perspective of family members, excluding the input from the people who are diagnosed with mental illness. The purpose of this project is to seek that neglected perspective from individuals diagnosed with schizophrenia to develop a broadened conceptualization of caregiving that can inform more effective family interventions.

Methods: Interviews were conducted with twenty-one individuals diagnosed with schizophrenia (7 women, 14 men). These individuals participated in a semi-structured interview that explored illness experience and its impact on identity, relationships and quality of life. Interviews were audiotaped with participants' consent, transcribed verbatim, and analyzed using QSR-N5® software. The investigator and a research assistant developed a preliminary coding manual based on review of the research literature and then coded each manuscript independently. Final themes and categories were extracted and validated through negative case analysis, peer debriefing and member checking.

Results: The participants identified several dimensions of care that were important to them in their relationships with family members, friends, mental health professionals and members of the community. Referring to their experience as care recipients, they discussed types of care received, contested practices in care, and negotiation of care relationships to address expectations and limitations of caregivers. Referring to their roles as caregivers, they discussed recipients of their care and types of care they provided to others. Participants also discussed the importance of their need for self-care and strategies used to meet this need within constraining circumstances. The participants' narratives suggest that people who are diagnosed with schizophrenia are not passive recipients of caregiving, but instead, are active participants that understand caregiving as potentially bi-directional, potentially beneficent or maleficent, and potentially providing opportunities for them to contribute positively to their own lives and the lives of their friends, families and communities.

Implications for Practice: Seeking the subjective experience of caregiving from people diagnosed with schizophrenia reveals that dynamics within caregiver-care recipient dyads are highly complex. Participants reveal that caregiver burden, a dominant concern of practice and research in the area, is an issue that concerns them, however, this concern is in a context that includes their need to be active participants in caregiving relationships and to have their roles in providing self-care and acting as caregivers for others acknowledged and recognized as meaningful parts of their lives. Current family support interventions may be limited by their failure to accommodate dimensions of care that are identified as important by people who are diagnosed with mental illness. The key to more comprehensive, effective models of family intervention may be the integration of concepts based on an understanding of people with mental illnesses as active participants in their own care and caregiving relationships.