Deepening Clinician Understanding of Family Caregivers’ Lived Experiences Caring for Medically Complex Children

Outcomes 1. Participants will self-report the ability to summarize elements of CMC family caregivers’ four “unseen” experiences and justify the need for innovative methods to capture them.2. Participants will self-report the ability to describe the four qualitative methods capturing parent experiences presented in this talk and justify the importance of partnering with parents as members of the research team. Key Message Clinicians lack insight into the lived experiences of family caregivers of children with medical complexity. Integrating parent partners into the research team can illuminate family caregivers’ “unseen” experiences to both improve clinician-parent rapport and better inform family caregiver support interventions. Abstract Clinicians do not witness outside-the-hospital experiences of family caregivers of children with medical complexity (CMC). Parents’ “unseen” experiences include: (1) the gradual process of becoming CMC caregivers, (2) providing direct medical and care needs (e.g., the work of care), (3) attempting to find rest and rejuvenation while caregiving, and (4) grieving the death of a child. Parents are therefore necessary partners in helping clinicians better understand these experiences. By partnering with parents as members of the study team, researchers can more effectively illuminate caregivers’ “unseen” experiences with the dual aim of improving clinician-parent rapport and informing parent support interventions. Further, integrating parent partners into the research team generates research focused on the issues that matter most to those directly affected and empowers parents to contribute to the science of caregiver support.In this talk, we share our perspectives and experiences as clinician-scientists, one a bereaved parent of a child with medical complexity. We first summarize the four “unseen” parent experiences laid out above. We then explain why innovative methodologies are needed to capture them and describe four qualitative methods we have used for representing such experiences: (1) photo elicitation, (2) ethnography and participant observation, (3) integration of bereaved parents into research planning and conduct, (4) experience-based co-design for development of interventions. Finally, we assert that prioritizing methods that elevate the “unseen” is an important challenge for pediatric palliative care research. Keywords Scientific Research / Communication