A Phenomenological Study of Health Professionals’ Perceptions of Good and Bad Pediatric Hospital Deaths, Self-Care Needs and Lingering Distress

The death of a child is devastating. Although death is a part of every life, a child dying seems out of order in current times and in the context of Western Healthcare. Health professionals (HP) caring for dying children frequently report suffering. In the past four decades, HP have been concerned with providing a “good death” for patients at the end-of-life (EOL). While studies have shown what a good death includes in elderly patients in various settings, few studies have examined what constitutes a good death for pediatric patients within the hospital setting. No studies were found examining healthcare workers in all care areas within a children’s hospital in the context of a specific death event. This qualitative study applied an interpretive phenomenological approach which is ideal in studying this topic because the researcher is attempting to interpret the meaning of the phenomena-namely HP lived experiences of good and bad deaths in the pediatric hospital setting, self-care needs being met subsequent to a pediatric hospital death and ongoing distress after caring for a dying child in the pediatric hospital. Health professionals working in an urban children’s hospital in Southern California provided this data. Pre collected, open-ended text entries were analyzed from over 300 surveys. Directed content analysis was performed utilizing the method described by Hsieh and Shannon (2005). Analysis of good and bad death data was directed by empirical domains of the Quality of Dying and Death instrument proposed by Downey et al. (2010). Themes were categorized under four domains: symptom control, preparedness, connectedness, and transcendence. Several subthemes were nested under each domain. Data related to meeting the needs of HP fell under the themes: focus on patient and family, resources, and cohesion. Emerging themes related to HP report of ongoing distress were: bad death, external factors, and internal factors. Implications for future research as a result of this study include: exploration of sudden pediatric death events, exploration of the concepts, parents letting go, and everything done, and the subjective nature of a good death among HP