SANDRA ELAINE MONK
CAREGIVERS’ PERCEPTIONS OF TRANSITION OF A FAMILY MEMBER FROM ACUTE CARE TO HOSPICE INPATIENT CARE
Transition at end of life has the potential for fragmenting the delivery of health services and becoming a burden for patients and families according to the Institute of Medicine (2014). In spite of the family caregiver’s essential involvement in caring for a family member at end of life, less recognition has been placed on the emotional needs of the family caregiver (Harrington, Mitchell, Jones, Swettenham, & Currow, 2012). The purpose of this study was to explore the lived experience of caregivers during the transition of a family member from an acute care to hospice inpatient care. The study addressed the following research questions: “What are the lived experiences of caregivers during the transition of a family member from an acute care setting to a hospice inpatient setting?” and, and “What experience mattered most to family caregivers during this transition?” Subjective experiences of the caregivers were described by the researcher with a focus on transition according to Meleis’ (2010) theory of transitions and a conceptualization of patient-and family-centered care in hospice and palliative nursing. Giorgi’s (2009) procedural method of descriptive phenomenology was utilized to analyze data and to develop a structure of the experiences of caregivers in the transition of a family member from acute care to hospice inpatient care.
Study participants included 13 caregivers with a mean age of 55.2 (S.D. 12.6) years. Of those participating in the study, 77% were female. Participants completed qualitative, semi-structured interviews in a hospice inpatient setting. Seven interrelated constituent parts evolved from descriptive phenomenological data analysis to form the structure of a description of the phenomenon. Constituent parts and variations of the structure for caregivers’ experiences during transition of their family member at end of life included: Context, Caregiving, Chaos, Communication, Candor, Communication, Comfort, and Confidence. Findings of the study suggested caregivers gained confidence when shared goals for patient comfort were met through communication and assistance with navigation. Caregiver assessment and anticipatory planning earlier in the process, informed by caregivers’ experiences for evidence-based interventions, could help ease burden, and support a partnership during transition from acute care to hospice inpatient care.