Improvements in medical technology and therapeutics have resulted in increasing numbers of chronically, critically ill patients who are on mechanical ventilation for prolonged periods of time. The family caregivers of these patients experience significant burdens as they oversee the care of their loved ones. The purpose of this phenomenological study was to examine the experience of chronic critical illness from the perspective of the family caregiver, and specifically to examine their response to an APN case manager assigned to support both patient and caregiver. The philosophical framework underpinning this study is hermeneutic phenomenology which seeks to elicit and describe the meaning of human experiences. This phenomenological study is part of a larger, intervention study involving Advanced Practice Nurses (APN) experienced in caring for the chronically critically ill. Semi-structured interviews were conducted with 15 family caregivers who had a loved one who had been chronically critically ill and had been on prolonged mechanical ventilation. Twelve of the participants had been assigned an APN case manager and three had not. Questions including "What was it like to go through this difficult hospitalization with your family member?" and "what helped you get through it?" guided the interviews which were recorded, transcribed verbatim, and analyzed using the Giorgi method of thematic analysis. Participants described medical and nursing staff as often providing information with reluctance and limiting this information to the plan of care. Intervention participants portrayed the APN as providing Caring Accessibility to information and Advocacy during an experience fraught with stress, helplessness and confusion. Findings reveal the hidden but critical influence of the APN’s Caring Accessibility to family caregivers and the necessity for critical care staff to appreciate the family’s experience and information needs.
Session #1205 - Family Caregiving
The 29th Annual MNRS Research Conference (April 1-4, 2005)