The Importance of Parental Connectedness and Relationships With Healthcare Professionals in End-of-Life Care in the PICU*

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Abstract

Objectives:

Support from healthcare professionals in a PICU is highly valuable for parents of dying children. The way they care for the patients and their families affects the parents’ initial mourning process. This study explores what interaction with hospital staff is meaningful to parents in existential distress when their child is dying in the PICU.

Design:

Qualitative interview study.

Setting:

Level 3 PICU in the Erasmus University Medical Center-Sophia Children’s Hospital, Rotterdam, and the Netherlands.

Subjects:

Thirty-six parents of 20 children who had died in this unit 5 years previously.

Interventions:

Parents participated in audio-recorded interviews in their own homes. The interviews were transcribed and analyzed using qualitative methods.

Measurements and Main Results:

Parents’ narratives of their child’s end-of-life stage in the PICU bespeak experiences of estrangement, emotional distancing, and loneliness. Significant moments shared with hospital staff that remained valuable even after 5 years primarily involved personal connectedness, reflected in frequent informational updates, personal commitment of professionals, and interpersonal contact with doctors and nurses.

Conclusions:

Parents whose children died in the PICU value personal connectedness to doctors and nurses when coping with existential distress. Medical and nursing training programs should raise awareness of parents’ need for contact in all interactions but especially in times of crisis and apprehension.

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