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

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.