Editor's Note: Danielle Gerber is the mother of a child with medical complexity and a Family Engagement Specialist at the Waisman Center in the University Center for Excellence in Developmental Disabilities at the University of Wisconsin Madison. – Heidi Kloster, MD, Associate Professor of Pediatrics, University of Wisconsin School of Medicine and Public Health
Families with children with medical complexity (CMC) delicately balance the roles of parent, caregiver, nurse, case manager, pharmacy tech, therapist, chauffeur, and short-order cook on any given day. Finding time to fit in self-care is challenging and when their CMC is hospitalized, all of their roles get up-ended and self-care often goes out the window and down to the bottom of the priority list. Society today places so much emphasis on self-care and resiliency, but what does this look like for caregivers of medically complex children, especially when those children are hospitalized?
In a recent issue of Hospital Pediatrics, Krieg et al. aimed to identify coping factors for caregivers of CMC during periods of hospitalization in their article entitled, “Coping Factors for Caregivers of Children With Medical Complexity During Hospitalization” (10.1542/hpeds.2023-007207). The team interviewed 14 caregivers and identified 3 main factors that contributed to caregiver coping with their child’s hospitalizations. These factors were feeling that they are prioritizing their child’s needs over their own, feeling trust in their child’s interdisciplinary healthcare team, and feeling their self-care practices are well adjusted to the hospital setting. We should use caution in interpreting the term “self-care” in this context. Self-care may mean something more akin to survival—a shower every few days, the opportunity to actually sleep, a walk outside for a few minutes—than how “self-care” is typically interpreted in the lay press or community environment.
It is encouraging to see that research is being done to consider how to better support parent caregivers, especially for the specific CMC population, so that future interventions can be considered. In terms of future interventions, it is worth considering if it may be more important to go back to the concept of family-centered care. In my opinion, when a family is included and valued as a member of their child’s care team, when that family feels heard and understood, that alone carries far more weight than a possible future intervention could.
It is also important to consider what is meant by the term “caregiver coping,” which is defined in this article as “cognitive or behavioral actions used by an individual to minimize distress.” From my perspective as a parent of a CMC, I am certain that my definition of coping is radically different than what this study team has defined. When you are the parent of a CMC, you adjust every aspect of your life and do the best you can to keep your child alive and happy. I don’t think of it as coping, it is just reality. Life with a CMC is certainly full of uncertainty and a lot of grieving (coming to terms with the fact that life will look a lot different than what you thought), but there is also a tremendous amount of joy and unrivaled love that comes with it all.
We (parent caregivers) gladly take on all the roles that are essential in caring for our children because we love our children, but also because there is no other choice. Parent caregivers put in inordinate amounts of hours (usually unpaid), in environments that would often be deemed “unsafe.” The takeaway point here is that while we can and do find ways to cope, there is a long way to go in improving the systems that are supposed to help us care for our kids.
As a pediatrician or hospitalist, what can you do? Next time you are caring for a CMC who is inpatient, consider taking two extra minutes to ask the family member present about themselves: their name, what they like to do (when not inpatient), what they love to do as a family. Two minutes a day can build a lifetime of relationship and could scaffold coping for that family and maybe even for yourself (as a provider). Finally, what if future interventions were studied and co-designed with family partners? Imagine what we could learn by asking and partnering with families from day one.
