Being a parent of a child with cancer throughout the end-of-life course

Abstract

Purpose/objectives: To elucidate parents' experiences when caring at home for their child with incurable cancer and to show how parents give meaning to their experiences throughout the end-of-life (EOL) phase.

Research approach: Interpretative qualitative study.

Setting: Five academic pediatric oncology centers.

Participants: 42 parents of 22 children with incurable cancer, cared for at home.

Methodologic approach: An inductive thematic analysis of single and repeated open interviews using phenomenological techniques.

Findings: Four EOL stages were identified: becoming aware of the inevitable death, making the child's life enjoyable, managing the change for the worse, and being with the dying child. The essence of parenting during those stages was captured by the notion of being meaningful to the child and preserving the parent-child relationship. Parents were able to cope better with the EOL phase and to sustain their parenting role because of their ability to postpone grief, enjoy their child's expressions of happiness, see the child's identity despite physical impairment, and enjoy the rewards they experienced from being there for their child.

Conclusions: Parenting while losing a child brings parents to the point of an existential crisis. The child's deterioration forces parents to redefine their traditional parenting role. Although the way parents give meaning to their caregiving experience helps them cope, it can decrease their ability to acknowledge the child's needs.

Interpretation: Nurses can help parents to face the reality of their child's situation and redefine their role accordingly, such as by providing information and alternative perceptions that fit the child's changed needs while preserving the parent-child relationship. Attention to signals indicating stress disorders is needed.