Kim Mooney-Doyle – University of Maryland School of Nursing, MD, USA
I am a nurse scientist dedicated to advancing family health in serious pediatric illness. I have studied parent-sibling relationships and the social ecological factors that impact it for the past decade.
Feature Article
Kelada, L., Jaaniste, T., Cuganesan, A., Chin, W. L. A., Caellainn Tan, S., Wu, J., Ilin, R., Robertson, E., Drew, D., & Wakefield, C. E. (2024). Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis. Palliative & Supportive Care, 1–7.
Commentary
Siblings are special and, too often, invisible in the care of seriously ill children, adolescents, and young adults. Two articles in this month’s collection bring the needs and experiences of siblings into focus using a family lens.
Kelada and colleagues illuminated and compared perspectives of illness-related communication among parents and siblings of youth living with chronic illness and youth living with serious illness. In this qualitative study of 68 siblings and 125 parents, they found most siblings were satisfied with illness-related communication within the family when it was open and age-appropriate. Siblings were less satisfied when they perceived being left out of discussion or when they perceived receiving information in an amount or manner not consistent with their preferences. Parents reported an overall preference for open communication, but this was endorsed more by parents of youth with serious illness. A key take-away from this important work is that while siblings want to communicate with their parents about their brother’s or sister’s illness, it can be hard to initiate such conversations. As clinicians and researchers, we can work with families to devise strategies that foster these conversations, such as providing prompts or a scripted conversation guide to help a parent engage the sibling.
Tenhulzen and colleagues help us continue reflecting on the needs of parents and siblings. In this qualitative study, 15 bereaved parents and siblings from 9 families described their family experiences before, during, and after the death of a child in the family. Parents and siblings described a recursive process of grieving marked by periods of crisis, learning to cope, and establishing a new equilibrium. Importantly, the authors highlight the interrelatedness of parent and sibling grief and emotional responses to both the death and to evolving family dynamics. The evolving family dynamics can be both positive and negative, including perceived stronger cohesion or greater avoidant coping to avoid causing pain in each other. I was struck by a quote by a parent that speaks to the interrelatedness of parent-sibling grief and parent-sibling coping and to the power of presence, who says “There’s all these incredible professionals and they have all the right words…but my daughter really wanted to grieve with me. And I was enough.” The sentiment is simple and yet profound as we think about the health and healing of family systems after a child’s death.
I offer this commentary as I grieve the death my grandmother, at 100 years of age, this month. As we gathered as a family to both celebrate her life and mourn her loss, I thought about the ways our family system is now different and the interconnectedness of the stories that her children, grandchildren, great-grandchildren, nieces, nephews, and neighbors would cherish. One change in the family system, though, brought me most readily to tears. My grandmother was one of nine siblings and now only one is still living. I must stop in my tracks when I consider the depth of love and care that connected these nine sibling souls, and that my grandmother and her surviving sister shared this earth for almost 90 years! Indeed, siblings across the lifespan are special and warrant our attention, especially in the context of a child with a serious illness where the parent-child-sibling dynamic makes things more complex.
Additional References
- Tenhulzen, K. A., Claridge, A. M., McCarthy, A., Craven, M., & McClendon, L. F. (2024). “Grief Explodes all Relationships”: Experiences of Grief and Coping Among Parents and Siblings Following the Death of a Child. Omega, 302228241289511.
View the 2025 Issue #2 Citation List in Library