Partnering With Caregivers in Bereavement Research: Why It Matters and Best Practices

Bereaved caregivers are at risk of poor mental and physical health outcomes following the death of their child. However, their voices are often excluded from the very end-of-life and bereavement research aimed at improving outcomes during this vulnerable time. In this article, we highlight the importance of involving bereaved caregivers in research by sharing personal insights as well as data on bereavement outcomes and caregivers' experiences with research participation. We then present strategies for effectively engaging bereaved caregivers throughout the research process, including evidence-based recommendations and practical approaches. Patient-engaged research helps (1) tailor interventions to the population of interest and (2) facilitate recruitment and retention (3) with results interpretation and (4) dissemination, among other benefits; all of which could benefit bereaved caregivers. Despite concerns that bereaved caregivers participating in research is overly burdensome, research shows that bereaved caregivers often find benefit in research participation and appreciate the opportunity to be involved, even when participation is emotionally challenging. Although distress during research participation is occasionally reported, it rarely reaches a level requiring professional assistance. Conducting high-quality bereaved caregiver research requires a thoughtful approach, ideally with bereaved-caregiver partners guiding the efforts. We describe best practices and considerations for identifying bereaved-caregiver research participants, timing of approach, recruitment, renumeration and appreciation, distress monitoring, and providing psychosocial support, as well as data collection, analysis, interpretation, and dissemination for studies. We must ensure that bereaved caregivers are meaningfully and appropriately engaged in bereaved caregiver research, which is an essential step in improving bereaved-caregiver outcomes.