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

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. Twentyone 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.

Bereavement Follow‐Up After the Death of a Child as a Standard of Care in Pediatric Oncology

“…Research has shown that some parents would like, in addition to follow‐up, bereavement mental health support, sometimes well beyond the first year of bereavement . However, parents, especially minorities, often face barriers in accessing such support . For example, although parents often appreciate services from the institution at which their child was treated, studies have shown that it is emotionally difficult for parents to physically return to the place of treatment, which may be, in part, why home visits are desirable .…”

“…For example, although parents often appreciate services from the institution at which their child was treated, studies have shown that it is emotionally difficult for parents to physically return to the place of treatment, which may be, in part, why home visits are desirable . Parents are also frequently concerned about the well‐being of their surviving children and want formalized bereaved sibling support . Evidence suggests that there are benefits to grief interventions focusing on the entire family …”