School for Social Work
Caregivers-Family relationships, Mentally ill-Family relationships, Caregivers-Psychology, Caregivers-Services for, National Alliance for the Mentally Ill (U.S.), Mental illness, NAMI
This qualitative study explored the experiences of caregivers to a mentally ill family member, focusing on the needs and problems they face. The demands for families to act as caregivers to their psychiatrically ill relatives have increased; their involvement has reduced relapse rates. Understanding caretakers' perspectives in fulfilling this vital role was a goal of this study. Twelve one hour interviews were held with fourteen caregivers who were actively involved with NAMI, Rhode Island. The relatives they cared for had been diagnosed with schizophrenia, schizoaffective disorder and bipolar disorder. Open-ended questions enabled participants to provide descriptive accounts of their caregiving experiences. Questions included: the patient's diagnosis, current functioning and treatment; and their own caregiving responsibilities and its impact on them. Participants discussed their own self care, supports they were receiving, and recommendations for new caregivers. Findings emphasized caregivers's experiences in providing for: structure in patients' lives; assistance with activities of daily living; arranging/coordinating appointments and services. Caregivers noted insufficient community resources, both for patients and family members, including a lack of access to psychiatrists in community mental health centers. Caregivers experienced disruption and limitations in their daily lives, such as reduced personal freedom, and leisure time, missing work, and experiencing shame, guilt and worry. Caregivers struggled with their grief and loss, in terms of the "children" who had been, and their dashed hopes for their future.
Mark, Diana E., "Experiences of caregivers for relatives with a chronic severe mental illness : riding the roller coaster : a descriptive study" (2013). Masters Thesis, Smith College, Northampton, MA.