Exploring Maternal Insights into Pediatric Serious Illness: Informing Education, Advocacy, and Policy through Coalition Work

Eileen R. O'Shea, DNP, APRN, PCNS-BC, CHPPN of The Marion Peckham Egan School of Nursing and Health Studies will deliver the 2025 Robert E. Wall Award Lecture.

“Exploring Maternal Insights into Pediatric Serious Illness: Informing Education, Advocacy, and Policy through Coalition Work”

With significant advances in medical treatments and technologies, healthcare professionals have greater abilities to sustain life in children (prenatal to 21 years) born with complex, serious illnesses or potentially life-limiting diagnoses. Pediatric palliative care (PPC) emerged as a healthcare specialty with a crucial mission: to enhance the quality of life for children who are living with serious or life-threatening illnesses and their families. This approach, which is appropriate at any stage of a serious illness, and can be provided in any setting (hospital, community, home), focuses on preventing and minimizing suffering, optimizing function, and supporting physical, psychosocial, and spiritual well-being throughout all phases and transitions in care. It is also beneficial when provided along with treatments of a curative or life-prolonging intent.

Unfortunately, there remains a significant gap in palliative care for Connecticut families who require substantial ongoing medical, financial, psychosocial, emotional, and spiritual assistance. To better understand families’ experience from their perspective, a qualitative research study was conducted to describe the day-to-day experiences of Connecticut parents who care for children with serious illnesses at home. This presentation will discuss preliminary findings from this unrecognized population. Eight mothers, who care for their children with serious illnesses at home, provided rich and thick descriptions of their experience. The need for coordinated community-based pediatric palliative care services and resources is not just important, it's urgent. This urgency will be highlighted, along with the multi-pronged efforts to effect change through the formation of a Statewide Pediatric Palliative Care Coalition. 

For more information about the event, please contact PJ Jorgensen via email  pjorgensen@fairfield.edu