UMSON Assistant Professor Awarded Nearly $.5M to Identify Family Communication Needs Among Siblings and Parents of Seriously Ill Children
Baltimore, Md. – Kim Mooney-Doyle, PhD, RN, CPNP-AC, assistant professor at the University of Maryland School of Nursing (UMSON), has been awarded a two-year R21 grant of $460,000 from the National Institute of Nursing Research (NINR) to research 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 with technological and health care improvements, emphasizing the need to develop systems and processes of care to bolster family strengths, diminish family suffering, and expand palliative care to all children affected by serious illness, according to Mooney-Doyle.
“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,” Mooney-Doyle 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.”
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.
Adolescent siblings may opt to engage in risky behavior, withdraw from peer and family relationships, and decline sharing concerns with parents whom they perceive as already overburdened. Risks for the family may also 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 across the nation. The team will then use the information it learns in the surveys and interviews to create a family-focused intervention 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.”
The University of Maryland School of Nursing, founded in 1889, is one of the oldest and largest nursing schools in the nation and is ranked among the top nursing schools nationwide. Enrolling nearly 2,000 students in its baccalaureate, master’s, and doctoral programs, the School develops leaders who shape the profession of nursing and impact the health care environment.