“I don't grieve as much as I used to”: A qualitative study on parents of children with rare and undiagnosed conditions navigating grief in the context of uncertainty

The aim of this qualitative interview study was to explore the lived experiences of parents, experiencing high anxiety and poorer quality-of-life/family functioning, caring for a child with a rare and undiagnosed condition. Data analysis led to the generation of a substantial corpus of insights focusing on how parents cope with grief amidst the uncertainty surrounding their child's condition. Whereas much is known about grief related to death in pediatric cancer patients, research focusing on grief in the area of rare and undiagnosed conditions is sparse. We conducted semi-structured interviews with 24 parents of children affected by a rare and undiagnosed condition undergoing whole genome sequencing (WGS) through the Genomic Medicine Service (GMS) in England and Wales. Participants were purposively sampled based on scores to validated psychological measures. We used reflexive thematic analysis, situated within an interpretivist and post-positivist research paradigm, to explore the data. The central organizing concept was named "Navigating Grief In The Context Of Uncertainty." This overarching theme describes how these parents grieve the loss of the envisioned future they held while navigating an unpredictable reality shaped by their child's undiagnosed condition. Our findings also highlight the "potential ongoingness" of grief, although it may change over time. Parents adapt through constructive reframing, seeking meaning and acceptance, and fostering resilience all of which we found to aid in coping. Understanding the grieving process, particularly the role of uncertainty, is essential for improving the clinical support provided to families affected by rare and undiagnosed conditions and for designing future psychological intervention strategies that address parents who grieve the loss of their anticipated family life.