The ordinary in the context of the extraordinary: Parenting in pediatric life-threatening illness

Parenting a child with a life-threatening illness and who is likely to die is unfathomable to most parents. Balancing the needs of a child who is ill with his or her healthy siblings adds a layer of complexity and work to an already challenging situation. Uncovering what it means to be a parent in this context to all of the children in a family is essential to the family-centered disciplines of pediatric palliative care and pediatrics and is central in moving the science of these disciplines forward. The current mixed-methods study (QUAL+quant) employed interviews with 31 parents, using qualitative descriptive methods, and the Parenting Tasks and Goals instrument to uncover how parents describe parenting all of their children in the context of pediatric life-threatening illness, how they rank and prioritize important aspects of parenting the children who are ill and those siblings that are healthy, and how they describe balancing and juggling the needs of all children in the family. The results demonstrate that, above all, parents want their children to feel loved and they work to maintain and foster this connection to their children by observing the children over time and reading cues. The work parents do to foster the connection with each child varies across children in a family and differs between the child who is ill and the siblings who are healthy. Much of the work and important tasks and goals for the child who is ill centers on the illness management and helping the child heal from the acute event. Much of the work for the children who are healthy focuses on maintaining normalcy and their activities. Parents work hard to manage and meet all the needs of the children in the family which means there are often trade-offs that cause emotional pain for the parent and most likely the affected child. The findings of this study build a foundation for theoretically-sound interventions with families and draw attention to voices who are less-readily heard in pediatric palliative care