Exploring the Experiences of Parent Caregivers in Schizophrenia

Abstract

Purpose: Family caregiving is vital to the health of persons with schizophrenia and without this support, many individuals would struggle to maintain their community tenure. While there is an abundance of literature that explores family caregiving in mental illness generally, less is known about the experiences of family caregivers of persons with schizophrenia. Furthermore, the primary caregiver for a person with schizophrenia tends to be a parent, and parent caregivers’ experiences differ from those of other types of family caregivers, such as spouses and children. Often, the experiences of parents’ caregiving for a person with schizophrenia are intermixed with the experiences of other types of family caregivers, which might minimize or distort their particular subjective realities. The purpose of this Thesis is to explore the experiences of parent caregivers of adult children with schizophrenia (ACWS) through a synthesis of existing literature and interviews with parent caregivers. Objectives: There were two objectives: 1) to review existing literature on the experiences of parent caregivers of adult children with schizophrenia and 2) to explore the experiences of parent caregivers of adult children with schizophrenia in a large urban Canadian city. Methods: This was a two-phase study using an emergent design. Phase one was an evidence synthesis of qualitative research on the experiences of parent caregivers of adult children with schizophrenia, modeled on the Joanna Briggs Methodology for qualitative systematic reviews. The review was conducted in accordance with the ENTREQ statement and all standard procedures were followed for citation screening, data extraction, and quality appraisal. Five Exploring the Experiences of Parent Caregivers in Schizophrenia iii studies were included from four countries (2009 – 2016). Phase two was an Interpretive Description qualitative study using interviews to explore parent experiences of caring for adult children with schizophrenia. Twelve parents (eight mothers and four fathers) completed interviews. In both phases of research, conventional content analysis was used to analyze data. Findings: Findings from the qualitative evidence synthesis revealed that parent caregivers of ACWS experience psychological distress, losses related to self and to child, and significant consequences for their families. Importantly, parent caregivers frame their experiences in positive and meaningful ways, which help them cope with their role. Parent caregivers included in the qualitative study described experiences of uncertainty and change related to their child’s schizophrenia and subsequently the actions they needed to take that were counter to their expected parent role. These parents further described the negative and positive effects of caregiving on their own lives. Finally, when comparing the findings of both phases of research, there were two cross-cutting considerations. First, parents have difficulty using and understanding the resources available in the mental health care system. Second, parents experience distress in their caregiver roles, and this distress is often induced or worsened as a result of barriers to treatment for their ACWS. Conclusion: Parent caregivers for persons with schizophrenia experience tremendous difficulty navigating the health care system. These challenges compound the psychological distress they already experience, by virtue of their role. Often, these parents prioritize their caregiving responsibilities above their own health and well-being. Health care providers must understand, acknowledge, and address parent caregivers’ needs, advocate for a less fragmented mental health care system, and support parent caregivers to be empowered and satisfied in their role.