Document Type

Presentation

Publication Date

4-10-2026

Faculty Mentor

Scott Hutchison

Abstract

Families receiving perinatal and neonatal Palliative Care (PC) services can experience significant emotional and practical challenges while caring for a child with medical complexities. The Care Companion, a family centered, educational resource, was created in response to survey findings indicating that rehabilitation therapists (OT, PT, and SLP) encountered challenges in providing PC services, followed by site‑specific insights that highlighted additional gaps in family support, education, and parent–infant bonding. This Occupational Therapy (OT) Capstone project was completed within a large academic pediatric medical center providing interdisciplinary PC services to families whose infants have been diagnosed with serious, life‑limiting conditions. The purpose of the project was to develop a comprehensive, family-centered binder system—The Care Companion—to streamline and reinforce provider-to-family information delivery, improve parental self-efficacy and bonding, support developmentally appropriate parent–infant interaction, and enhance continuity of care and patient comfort in the perinatal period. 

Project aims included: (1) developing an evidence-based educational resource for PC practitioners and families receiving PC services to increase preparedness and self-efficacy in caring for critically ill infants, (2) implementing the educational resource within the clinical setting, and (3) evaluating its effectiveness and revising as needed to support long-term use in both clinical and educational environments. 

The final deliverable was a 55‑page customizable binder system addressing practical, psychosocial, and physical needs, while reinforcing opportunities for parent–infant bonding, understanding how to navigate the hospital, and emphasizing the role of PC in the pediatric setting. Expert interviews revealed strong themes of improving consistency of care between clinical settings, increasing education and knowledge transfer among parents, reduced clinician burden of care, and empowering parents to care for and bond with their children. Sustainability was supported through editable digital files, printing instructions, and preparation of 30 physical binders for distribution. 

Overall, the project highlights the role and value of OT within pediatric PC and produced an adaptable, family-centered resource for those navigating complex perinatal and NICU experiences.

Download

Share

COinS