Unseen, Unrelenting, and Uncertain: Caregiver-Identified Targets For Pediatric Palliative Care.

Abstract

Parent caregivers of children with medical complexity (CMC) provide continuous, multidimensional care over decades. Given that the growing CMC population now comprises most of pediatric palliative care (PPC) patients, palliative care clinicians are positioned to support parents in discipline- and expertise-specific ways distinct from pediatric complex care and other subspecialties. This study aimed to identify CMC parent caregiver challenges that can be optimally addressed using PPC expertise. This secondary qualitative analysis of semi-structured interviews with CMC parents explored caregiving challenges, using thematic analysis to identify themes. Themes were synthesized to identify potential levers for subspecialty palliative care-specific interventions and drive design of a conceptual framework to inform the ongoing development and implementation of PPC services for CMC parent caregivers. Nineteen CMC parent caregivers participated in interviews, most of whose children had chronic health conditions affecting primarily the neurologic/neuromuscular, gastrointestinal, and respiratory systems. Almost all represented children were supported by medical technology and relied on Medicaid for primary insurance coverage. Parent report of challenges that may be addressed by PPC highlighted three themes: being unseen in their care work, tackling unrelenting caregiving responsibilities, and facing uncertainty-henceforth referred to as "the 3U's." Each of these themes presented at three levels-the personal, the healthcare system, and the community. CMC parents' distressing caregiving challenges fall into three themes, which suggest key levers for clinicians aiming to support parent caregivers. This qualitative analysis offers guidance on how to optimally use a PPC-specific skillset for parent caregiver support.