| The purpose of this dissertation was to explore and record experiences of nonprofessional caregivers of comatose patients. Specific areas explored were emotional, physical, spiritual, financial, medical, and family dynamics. Prior research studies have focused mainly on the coma patient and his or her needs, while neglecting the needs of the caregivers. The minimal research on the needs of caregivers concerned observations from doctors and therapists, not personal words of the caregivers. Twelve participants, 6 men and 6 women, from the Northern Utah area completed a prequestionnaire and the Perceived Stress Scale (PSS) prior to the interview. Participants' ages ranged from 31 to 79 years old, all were Caucasian, and the majority were from the LDS religion. The caregivers participated in a 1 to 2-hour semistructured interview, with a 5 to 15-minute postsession interview 1 month later. The caregivers' relatives had been in a coma state for 2 months or longer, and were either currently in a coma, out of a coma, or deceased. The interviews were analyzed using manual qualitative thematic analysis. Analysis revealed 8 major themes: (a) emotional and mental experiences (b) medical concerns, (c) financial difficulties, (d) spiritual or religious experiences, (e) physical problems, (f) family dynamics, (g) hope and hopelessness, and (h) coma caregivers versus terminally ill caregivers, with an emergence of an unexpected theme of devotion. Results showed a need for the medical community to be more empathetic and show a greater amount of support and appreciation of the needs of long-term coma caregivers. A sense of hope was foundational in the resiliency of long-term caregivers. Implications and applications of this study are the need for a medical database to help track this forgotten population, concrete information and knowledge on daily hospital operations and protocol, noninvasive psychological support, and the need for psychological assistance for caregivers from within the hospital community. |
