More than half of intensive care unit survivors require assistance from family caregivers after discharge. Caregiving is associated with negative consequences including poor health-related quality of life, psychosocial distress, and burden. Little is known about how family caregivers find satisfaction and meaning in their experience.
To explore positive descriptions of the experiences of family caregivers of critically ill patients and to describe factors that family caregivers view as important to a positive caregiving experience from hospitalization to 4 months after discharge.
Qualitative secondary analysis was performed on data from semistructured interviews conducted as part of a longitudinal study that examined physical and psychological responses to stress in a convenience sample of family caregivers of adult intensive care unit patients who underwent prolonged mechanical ventilation (≥ 4 days). Interviews were conducted at 4 time points: during the hospitalization and within 2 weeks, 2 months, and 4 months after discharge.
Participants (n = 41) reported factors that helped them positively appraise their caregiving experience in 113 interviews conducted face to face or via telephone. During patients’ hospitalization, caregivers described changes in their role, with their primary responsibility being to advocate for the patient. They described how this experience fulfilled their identity and strengthened their relationship with the patient. Most family caregivers mentioned the importance of social support and prayer.
Family caregivers of intensive care unit patients can identify positive aspects of caregiving during the experience. Interventions to reframe the caregiving experience in a positive light are warranted.