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

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Project Summary/Abstract: Parents who experience their child’s death remember it vividly over their entire life. Children who die in the pediatric intensive care unit (PICU) present with varying care needs following different illness trajectories. The majority of PICU deaths follow a decision to limit or withdraw life-sustaining treatments, and less often result from unsuccessful resuscitation or brain death. Excellent clinical care and psychosocial support underpin the ability to achieve a “good death” experience for the actively dying child and their parents. Nursing care of actively dying children is grounded in an intimate understanding of the clinical presentation and perceived needs of dying children and their parents. The proposed study will provide the necessary foundation to build a program of research about clinician engagement and support of families during the time of a child’s death in the PICU. The goal of this training application is to better understand the nursing care needs of dying children and their parents in the PICU as defined through clinical data and parents’ perceptions. This proposal will use a sequential exploratory mixed-methods approach to develop skills in study design and implementation. The overall purpose of this study is to develop profiles that integrate dying children’s clinical presentation with parent perceived needs during their child’s end-of-life care in the PICU. Specific Aims include (1) to quantitatively define the clinical presentation, including baseline characteristics and care trajectories, of a cohort of PICU non-survivors of ARF by circumstance of death (i.e. limitation/withdrawal of LST, failed resuscitation, brain death) and illness trajectory (acute or chronic illness); (2) To qualitatively explore parents’ perceived needs, for their child and themselves, during the active dying period; and (3) To integrate clinical information with parent perceptual information to generate profiles of the nursing care needs of children and parents during a child’s death in the PICU. The proposed study aligns with the National Institute of Nursing Research’s 2016 Strategic Plan and Spotlight on End-of-Life and Palliative Care Research.