Mary Therese Phelan
Nearly 200,000 children and adolescents in the United States have a sibling with a serious, life-limiting illness. Siblings face physical, psychological, and social risks including anxiety, depression, substance use, academic performance concerns, and emotional distress. These risks increase when the seriously ill child’s life is at significant risk or when illness management strains family time and routines.
Kim Mooney-Doyle, PhD, RN, CPNP-AC, an assistant professor at the University of Maryland School of Nursing (UMSON), is researching how understanding family communication during serious pediatric illness, from the perspective of adolescent siblings and parents, provides opportunities to prevent long-term distress.
The number of seriously ill children is expected to grow, emphasizing the need to develop systems and processes of care to bolster family strengths, diminish family suffering, and expand palliative care to children affected by serious illness, according to Mooney-Doyle, who has been awarded a two-year, $460,000 R21 grant from the National Institute of Nursing Research.
“Family communication is central to everyday family life and functioning, and it is linked to child adaptation. Yet, there is a critical gap in understanding its impact on sibling adaptation in pediatric palliative care,” she said. “Despite the importance of family processes, like communication, few interventions exist to support family communication in this context. Addressing the health of family relationships and their impact on sibling well-being during serious illness could minimize suffering and poor outcomes in bereavement or survivorship. We can weave prevention into palliative care.”
Adolescent siblings might engage in risky behavior, withdraw from peer and family relationships, or decline sharing concerns with parents whom they perceive as already overburdened. Risks for the family also might increase when social determinants impact their ability to access resources and support, perpetuating disparities.
With the R21 funding, which is intended to encourage exploratory/developmental research by providing support for the early and conceptual stages of project development, Mooney-Doyle and her team will collect quantitative survey data and qualitative interview data from parents and adolescent siblings of children living with serious illnesses. They are working with local clinical sites and community organizations nationwide that serve English- and Spanish-speaking families of children living with serious illness. The team will then use the information it learns in the surveys and interviews to create family-focused interventions to support sibling adaptation.
“What is really important to me, and I think very cool, about our approach is that we will work with parent and sibling advisors, community partners, and organizations that support families of children living with life-threatening illnesses or bereaved families, clinicians, and researchers,” Mooney-Doyle said. “My team and I are thrilled to conduct this research, and we are so grateful for the support we have received from the UMSON and University of Maryland, Baltimore communities and the National Institute of Nursing Research and Office of Disease Prevention at the National Institutes of Health. We have so much to learn from adolescents, their families, and our community partners to create models of care that truly support family health.”
