The Involvement of Caregivers in the End-of-life Care of an Older Adult Living in a Long-term Care Home: A Qualitative Case Study with Nurses and Relatives

Abstract

Background A key role of nurses working in long-term care homes (LTCHs) is to promote the involvement of care partners in end-of-life (EOL) care. However, studies on the involvement of care partners in EOL care in LTCHs have focused on care planning and decision-making. While care partners can participate in other ways, it's unclear how they are currently involved in EOL care by staff. Purpose We aimed to explore the involvement of care partners in the EOL care of an older adult living in a LTCH. Methods A qualitative case study was conducted. Data was collected from a sample of four nurses and three care partners, using sociodemographic questionnaires, individual semi-structured interviews, documents pertaining to the LTCH's philosophy for EOL care, and a field diary. Results The results of a thematic analysis showed the broad scope of care partners’ possible involvement, including contributing to care, obtaining information, and being present. As there was some variation in care partners’ desire to be involved, nurses seemed to rely on them to convey their wishes. To promote this involvement, some strategies aimed at health professionals and managers were suggested. Conclusions These results can guide improvement in clinical practices and raise awareness on the EOL care experiences of care partners.