Abstract
The shift in the United States’ treatment of individuals with chronic mental illnesses from a hospital to community-based system, a process that has come to be known as deinstitutionalization, has markedly impacted mental health service delivery. Family members of people with a chronic mental illness have often had to assume critical caregiving roles in order to provide care to their relatives with a chronic mental illness within the context of their own community. This study examined the needs of family members, often referred to as family caregivers, who have a relative with a chronic mental illness for whom they provide care. Family members were recruited through the National Alliance of Mental Illness’ (NAMI) Family-to-Family Program and NAMI newsletter. Using a qualitative design, five family caregivers discussed their needs in their role as a family caregiver to someone with a chromic mental illness, and how they have been able to get these needs met within the context of the current mental health system. Family caregivers experienced both benefits and burdens due to their role in their family member’s life. Benefits included an increased sense of compassion for others with chronic mental illness, an expanded knowledge base about mental health issues, and a personal sense of reward and accomplishment. Participants identified burdens associated with their role as family caregiver such as increased levels of stress, worry, and sadness and strained relationships. Participants noted that limited amounts of time inhibited their ability to serve effectively in their role, and highlighted the importance of having social support and case management services. Participants spoke highly of their experience with the NAMI Family-to-Family program. They identified other resources through which they have gotten their needs met in their role as a family caregiver and provided suggestions to improve service delivery.