Parents Who Have Lost a Child to Cancer: What Do They Really Need?

Cécile Flahault,Sébastien Montel,Etienne Seigneur,Valérie Laurence,Hélène Pacquement

doi:10.4236/psych.2015.66064

Abstract

In a sample of parents who lost a child to cancer, we investigated their needs before and after their child’s death and how these needs were fulfilled. We met parents of AYA (adolescents and young adults) between 15 and 25 years old, who died in Curie Institute between 2000 and 2003. Twenty-one families agreed to participate in this study between October 2005 and April 2006. When a family agreed to participate, a semi-structured interview was held in the psycho-oncology unit of the Curie Institute. This interview was audiotaped and then retranscribed for analysis. Data were subjected to the Grounded theory method, a systematic and standardized method of semantic data analysis. Three prominent themes emerged from our thematic data analysis: first, the importance of psychological care during the terminal phase of the child’s disease and after the child’s death, reported by 95% of parents; second, the need to be listened to and to be understood by the medical team (97% of parents); third, the need for information from the medical team. A big discrepancy was observed between psychological support expectations and the proportion of parents who actually consulted or participated in bereavement groups. Our study clearly demonstrates that parents who lose a child through cancer have particular needs and therefore deserve special attention.

Highlights

The loss of a child is critical and traumatic for parents
In a study examining parental perspectives regarding bereavement services from a pediatric oncology treating center, D’Agostino et al interviewed 7 parents whose children had died from cancer (D’Agostino et al, 2008)
One of the main needs highlighted by parents was psychological support during the terminal phase of the child’s disease and after the child’s death

Summary

Introduction

The loss of a child is critical and traumatic for parents. Parents whose children have died from cancer live in a context of chronic uncertainty and apprehension (Monterosso & Kristjanson, 2008). Parental bereavement as well as their needs just before and after the child’s death remains poorly understood. A recent study explored the experience and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer (DeCinque et al, 2006). Parents identified the need for more supportive contacts from hospital staff during the palliative phase and following the child’s death, early access to information on how to practically and emotionally prepare for the death of their child, contact with other bereaved parents and formal grief support for siblings. In a study examining parental perspectives regarding bereavement services from a pediatric oncology treating center, D’Agostino et al interviewed 7 parents whose children had died from cancer (D’Agostino et al, 2008). Talking to other parents with similar experiences and maintaining contact with staff at the treating hospital were considered critical for their healing after the loss

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Results

Conclusion