Caring for the terminally ill: experiences of Latvian family caregivers

Abstract

To increase understanding of the experiences and needs of family caregivers of terminally ill persons in Latvia. Latvia has high death rates from cardiovascular disease and cancer, and families care for the terminally ill with little preparation and support. Health professionals also have little preparation in supporting these patients and families at the end of life. A qualitative study was carried out in the summer of 2004 in Latvia. Data collection was by semi-structured interviews with caregivers (n=18) whose care recipients died at least 1 year previously. The caregiver narratives addressed experiences that paralleled the trajectory of the patient's illness: the disruption of normal life patterns; taking on the caregiver role; establishing new patterns and learning role competencies; engaging in preparation for dying; and the gains and losses of the caregiving experience as seen in retrospect. The caregiver narratives suggested a need for more education in practical caregiving; access to patient care equipment and supplies; and a need for ongoing support and guidance by knowledgeable medical personnel during caregiving.