Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit

Authors

Elizabeth G. Broden, Psychosocial Oncology & Palliative Care, Dana-Farber Cancer Institute, 375 Longwood Ave, Boston, MA 02215, United States; University of Pennsylvania, School of Nursing, 418 Curie Blvd, Philadelphia, PA 19104, United States. Electronic address: ELIZABETHG_BRODEN@DFCI.HARVARD.EDU.
Allison Werner-Lin, University of Pennsylvania School of Social Policy and Practice, 3701 Locust Walk, Philadelphia, PA 19104, United States; National Cancer Institute, National Institutes of Health, 31 Center Drive, Bethesda, MD 20814, United States.
Martha A. Curley, Children's Hospital of Philadelphia, 3401 Civic Center Blvd, Philadelphia, PA 19104, United States; University of Pennsylvania, School of Nursing, 418 Curie Blvd, Philadelphia, PA 19104, United States; Anesthesia and Critical Care Medicine University of Pennsylvania Perelman School of Medicine, 3400 Civic Center Blvd, Philadelphia, PA 19104, United States.
R N. Hinds, Children's National Hospital, 111 Michigan Ave NW, Washington, DC 20010, United States; George Washington University, 2121 I St NW, Washington, DC 20052, United States.

Document Type

Journal Article

Publication Date

2-24-2022

Journal

Intensive & critical care nursing

DOI

10.1016/j.iccn.2022.103216

Keywords

Bereavement; End-of-life care; Family-centred care; Grief; Long-term outcomes; Qualitative

Abstract

OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit. RESEARCH DESIGN: Qualitative description with content analysis. SETTING: Interviews with eight parents of eight children who died in the paediatric intensive care unit 7-11 years prior. MAIN OUTCOME MEASURES: Descriptive categories of parents' perceptions of end-of-life needs. FINDINGS: Parents identified four shifting and intersecting categories of needs: To be together, To make sense of the child's evolving clinical care, To manage institutional, situational, and structural factors, and To navigate an array of emotions in a sterile context. Being closely connected with the child was highly important, but often intersected with other domains, requiring nurses' support. Parents' memories demonstrated persistent uncertainty about their child's end-of-life care that influenced their long-term grief. CONCLUSIONS: Intersections between parent-identified care needs suggest potential mechanisms to strengthen nurses' care for dying children. Equipped with the knowledge that the parent-child bond often shapes parents' priorities; nurses should aim to facilitate connections amidst paediatric intensive care unit processes. Ongoing uncertainty in parents' adaptation to loss suggests that attention to instances when needs intersect can have a lasting impact on parents' grief.

APA Citation

Broden, Elizabeth G.; Werner-Lin, Allison; Curley, Martha A.; and Hinds, R N., "Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit" (2022). GW Authored Works. Paper 290.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/290

Department

Pediatrics