Could Peer-Mentors Support Families of Care Home Residents to Prepare for Deterioration and End-of-Life? An Interview Study with Families and Care Home Staff

Abstract

When older people move into a care home, family members often continue to be involved in caregiving. This can include contributing to discussion and decisions about care and treatment, especially when the resident lacks capacity. However, families may not know what to expect as their relative’s condition progresses and may not have a good understanding of their relative’s end-of-life care and treatment wishes. Therefore, although often willing, families may feel unprepared for making decisions in advance of or at the time of deterioration and end-of-life. The study aimed to explore the potential role that peer-mentors might have in supporting families to prepare for discussion and decisions about care and treatment and to understand what participants would consider to be important characteristics of an effective peer-mentor and peer-mentoring program. The study was guided by the philosophical assumptions of social constructionism. Data from semistructured interviews with 14 current and 15 bereaved family members and 11 senior members of care were analysed thematically. Findings suggest that peer-mentors could help to empower families to prepare to be involved in discussions and decisions about the types of care their relatives might receive as their health deteriorates and they reach the end-of-life. However, it was seen as important that peer-mentors have lived experience of supporting a relative in a care home, strong interpersonal and communication skills, and the ability to discuss deterioration and end-of-life in a compassionate but factual manner. Although peer-mentoring is often time-limited, introducing mentors to families earlier in the care journey, for example, before admission into a care home, could enable a trusting relationship to develop. This, in turn, could facilitate open discussions about what to expect and different care choices as the person’s health changes.