Unseen, Unrelenting, and Uncertain: Medically Complex Children’s Caregiver-identified Palliative Care Targets

Key Message: Parents of medically complex children have identified three pressing caregiving challenges – the “3 U’s”: being UNSEEN, UNRELENTING responsibilities, facing UNCERTAINTY. Participants will (1) learn about this conceptual framework and novel palliative care initiatives targeting these issues and (2) co-design a programmatic, advocacy, and research agenda to further address them.

Abstract: Parent caregivers of children with medical complexity (CMC) provide constant, intensive care over decades with serious physical and mental sequelae[1,2]. As the growing population of CMC now comprises the majority of pediatric palliative care (PPC) patients, PPC clinicians are well-positioned to take the lead in supporting these parental caregivers [3]. However, our field currently lacks evidence-based PPC-specific interventions to improve caregiver well-being. Fortunately, CMC parental caregivers have partnered in numerous qualitative studies over the past decade that highlight the aspects of caregiving which are most distressing [4] and thereby offer potential targets for PPC psychosocial interventions.

A panel of interdisciplinary experts will start by amplifying CMC parent caregiver voices to characterize parents’ three most pressing challenges – the “3 U’s”: being UNSEEN in their work of caregiving, tackling UNRELENTING caregiving responsibilities with minimal support, and facing an UNCERTAIN future for their child and family. Qualitative and mixed-methods research from a variety of contexts and settings will be summarized to illustrate these challenges. Panelists will explain how PPC clinicians are uniquely suited to address these challenges and how targeting PPC-specific needs can improve division of labor with other teams focused on care coordination, medical management, and maintaining a medical home.

In the second half of the session, panelists will describe innovations that address challenges related to the “3 U’s,” offering examples from various PPC clinical programs, policy and advocacy initiatives, and research projects. Participants will then separate into small groups and participate in user-centered design activities, each facilitated by our team’s panelists. Participants will engage in brainstorming-focused design activities to generate additional clinical and research ideas aiming to address the “3 U’s” through a PPC lens. Session output will produce a foundation for a future PPC agenda to comprehensively address the “3 U’s” via clinical programs, advocacy, and research.

References: 1. Schall TE, Foster CC, Feudtner C. Safe Work-Hour Standards for Parents of Children with Medical Complexity. JAMA Pediatr. 2020;174(1):7-8. doi:10.1001/jamapediatrics.2019.4003
2. Yu JA, Bayer ND, Beach SR, Kuo DZ, Houtrow AJ. A National Profile of Families and Caregivers of Children With Disabilities and/or Medical Complexity. Acad Pediatr. 2022;22(8):1489-1498. doi:10.1016/j.acap.2022.08.004
3. Yu JA, Schenker Y, Maurer SH, Cook SC, Kavlieratos D, Houtrow A. Pediatric palliative care in the medical neighborhood for children with medical complexity. Fam Syst Health. 2019;37(2):107-119. doi:10.1037/fsh0000414
4. Comeau M, Padlan AM, Houlihan B, Coleman C, Louis C, Brown T, et al. The Collaborative Improvement and Innovation Network for Children With Medical Complexity. Pediatrics. 2024;153(Suppl 1):e2023063424B. doi:10.1542/peds.2023-063424B