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Involving lay caregivers in medical education

Context and setting In their penultimate year at our university, all medical students participate in a workshop involving bereaved lay caregivers during their palliative medicine course. The aim of this workshop is to provide students with the opportunity to better understand the caregivers’ perspective by hearing their stories directly from them, then reflecting upon these narratives and discussing the wider lessons to be learned from these individual experiences. Why the idea was necessary In medical education, there is a justifiably strong focus on the patient but much less opportunity to study the perspectives of the patient’s primary caregiver. Despite the caregiver’s often significant influence on patient views and care, the focus of most interactions between doctors and caregivers is limited to obtaining, or corroborating, the patient’s history. Increasingly, communication extends to sharing information about the patient’s condition and treatment. Rarely is the caregiver’s welfare considered in its own right. The palliative medicine course is ideal for embedding these learning opportunities because of the close involvement of lay caregivers in the care of dying people and those with advancing disease. Having accompanied a relative through an illness journey, bereaved caregivers carry a wealth of experience and observations which could provide powerful and authentic learning. What was done A 2-hour workshop was designed, building on prior experience of involving lay caregivers in interprofessional education in another setting. Twomonthly workshops are held, halfway through each palliative medicine course. Each workshop is attended by 28 medical students and jointly facilitated by a nurse and a doctor; five recently bereaved caregivers participate each time. The students and caregivers are separately briefed, after which each carer spends 30 minutes with a small group of students, relating his or her story and responding to questions. Although some guide questions are provided, these sessions are unscripted and facilitated only by the students themselves. Then, whilst the carer is debriefed, the students spend 20 minutes discussing the experience before presenting their reflections in whatever format they choose, back in plenary. The facilitators help the students to draw out the themes and discuss learning points. Evaluation of results and impact In the 4 years since we introduced these workshops, feedback from students has been consistently positive, reflected both in the open-ended questionnaires completed at the end of the workshop and in written and verbal feedback at the end of the palliative medicine course. In terms of what they learned about caregivers’ perspectives, students have identified: the need for practical and psychological support and information; varying coping mechanisms; exhaustion caused by constant care; the importance of involving caregivers without over-burdening them with responsibility, and the impact on the caregiver of putting ‘life on hold’. Students found the experience thought-provoking, insightful and ‘very real’, and were appreciative of the caregivers’ willingness to participate in these workshops. Many would have preferred more time with the caregiver. This is currently under consideration. Caregivers were equally positive about the experience and appreciated the direct opportunity to participate in medical education and to influence these future doctors.