Caring for Actively Dying Children and Their Parents in the Pediatric ICU: A Mixed Methods Study

Abstract

A child’s death upends a family’s anticipated life cycle and embodied parental roles; resulting in a profound grieving process. Though most children die in the pediatric intensive care unit (PICU) following a planned withdrawal of life-sustaining treatments, little is known about how nursing care at end-of-life shapes parents’ bereavement. This dissertation examined how nursing care at end-of-life in the PICU shapes parents’ long-term bereavement using a sequential explanatory (QUAN → qual) mixed methods design that integrated quantitative clinical information with qualitative parent interview data. Mixed-effects models were used to identify associations between patient characteristics (age, illness trajectory, length of stay, circumstances of death) and patterns of daily outcomes (pain, sedation, and nursing care requirements). Patients’ pain and sedation scores were generally comfortable but showed episodic discomfort. Patients with cancer demonstrated higher peak daily pain scores than patients with acute illness trajectories. Patients with longer length of stay more frequently had pain and pain with agitation on day of death. Most patients continued with multiple invasive devices in place until death, regardless of illness trajectory or circumstances of death (i.e., withdrawal of life-support, failed resuscitation, brain death). Qualitative analysis revealed four domains that shifted in priority and intersected to amplify one another; (1) Being together, (2) Tending to evolving clinical needs, (3) Managing institutional, situational, and structural factors, and (4) Navigating an array of emotions in an unwelcome context. These data were integrated to explain and contextualize quantitative findings and examine similarities and differences between parents’ perceptions and documented nursing care. Parents of children with varying illness trajectories used different priorities and terminology when recalling their child’s comfort and symptoms at end-of-life. Parents’ memories of their child’s suffering more closely corresponded with peaks in clinical scores, rather than overarching averages. The findings from this dissertation show that the end-of-life and grief experience is unique for each child and family, but opportunities exist for nurses to tailor their caring actions to promote a meaningful death experience that grieving parents remember for a lifetime