COORDINATOR CONCERNS: Supporting Families With Children

As caregivers in the world of health professionals, we take pride in the family support we offer. Pediatric loss is heart-breaking and inspires us to want to give our best in the hope of alleviating the family’s grief. And yet, when we work with the families of potential pediatric donors, it is important to remember the unique context which may make the role of OPO coordinators different than it is in our work with the families of potential adult donors.

Often, the child and family are in the care of Children’s Hospitals or pediatric units. The staffing ratio may be higher and there may be pediatric social workers and child life specialists on call. Hospital staff may have established close supportive relationships with family members over time, and it is extremely important that OPO professionals show respect and deference to these relationships and to the expertise of pediatric team members.

Good, open communication is essential at every turn so that we are able to hear the perspective of the hospital team, to offer our services, and decide together how best to meet the unique needs of each family. Best practice includes ongoing discussions about the ways OPOs and pediatric facilities will work together to provide care.

While donation staff are responsible for sharing invaluable information about donation, we often need to be flexible as to how we work in tandem with pediatricians and nursing staff during the different phases of the donation discussion and decision. We know that we have the best interests of families at the center of everything we do, yet—at times—OPO staff may feel discounted and distanced—even distrusted—by what can be labeled as protectiveness or territoriality in hospital professionals. But if we think about it from the hospital’s perspective, it makes sense that— as “outsiders”—we have to prove ourselves and earn their trust.

Families of potential pediatric donors are known to initiate the discussion of donation more frequently than other family members. They deserve to experience seamless team support from the involved professionals, even in cases where the OPO contributions are secondary to the hospital.

When we are involved in supporting the families of pediatric donors, research and experience has shown that in the intensity of losing a child, parents may not be aware of, or able to respond to the needs of surviving siblings. The grief and loss of these children may be minimized and they may infer that their value as a surviving child is less than the memory of the child who has died.

These feelings can be intensified when they’re not able to say their goodbyes: it feels as though a part of their life—and their relationship with their parents—has been erased. Offering support to acutely grieving families, asking whether we may assist with the care of the other children, and being present to the experience of those children can be powerfully healing.

In fact, in almost every loss, there is an affected child—or children. When adults are in the midst of taking in the news and making the many decisions that arise, it may be hard for them to maintain awareness of the needs of the children in the family.

In the course of our conversations with parents and adult family members, we can make a practice of asking how the children are doing and whether the family would like some additional support.

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