Redefining Parenthood

Surviving the Death of a Child

Suzanne L. Nuss, PhD, RN

Disclosures

Cancer Nurs. 2014;37(1):E51-60. 

In This Article

Abstract and Introduction

Abstract

Background: Although dying children are often aware of their impending death, parents are reluctant to communicate with their dying child about death.

Objective: The objective of this study was to examine how parents of children in the advanced stage of a life-threatening disease trajectory communicated about death.

Methods: Using grounded theory methods, data were collected via interviews with 18 parents of children who had died of an advanced life-threatening disease.

Results: Ways in which parents communicated with their dying child were impacted by the degree of threat to the parental role. From the onset of their child's life-threatening illness, the sense of parental self was threatened, resulting in "Parental Vulnerability." To endure parental vulnerability, parents confronted a process of "Redefining Parenthood." Before the child's death, parents experienced (1) Protecting From Fears, (2) Protecting Normalcy, (3) Protecting Faith, (4) Experiencing Protection From Their Child, and (5) Bookmarking Memories. After the child's death, parents experienced (1) Telling the Story, (2) Making Meaning, (3) Protecting the Child's Memory, (4) Defining a New Normal, and (5) Learning to Live With Regret.

Conclusions: Results provide new information about the experiences of parents of dying children as they communicated with their child during the dying process and as they found ways to go on with life after their child's death.

Implications for Practice: Findings can be used by healthcare professionals to help support families of dying children. The field of pediatric oncology nursing would benefit from exploration of the dying child's perspective.

Introduction

Although dying children are often aware of their impending death, parents are reluctant to communicate with their dying child about death. Communication is an ongoing, interactive process that may involve verbal and nonverbal signals.[1,2] A dying child may initiate a conversation with "Am I going to die?" or may draw pictures or tell stories about death.[3] Older children and adolescents may journal, delegate tasks, write poems, make amends with others, or even plan their funeral.[3] If mutually agreed upon, parents can be encouraged and supported in facilitating any of these types of communication with their dying children. Parents of children on life support can be encouraged to talk to and touch their child.[3] All communication with children about death should be geared to their developmental level,[2] family preference, and cultural beliefs.[4]

Classic pediatric end-of-life research demonstrated that adults (healthcare professionals and parents) were hesitant to openly discuss death with dying children and that this lack of communication caused anxiety in dying children.[5–7] In reality, dying children are usually aware that they are dying even when they are not specifically told by their parents or healthcare professionals of their diagnosis or prognosis.[6] If not given the opportunity to communicate this awareness to others, dying children experience anxiety, loneliness, and fear.[5,6] Swedish parents who did not discuss death with their dying child, even when they sensed their child's awareness of death, regretted they had not discussed death with their child and reported higher levels of anxiety after the child's death when compared with parents who did discuss death.[8]

The literature reveals many factors that influenced the ways in which communication did or did not occur. The most frequently reported factor was protection. Dying children often avoided discussing death to protect their parents from worrying, whereas parents often avoided discussing death to protect their dying child from worrying.5,9–11 Bluebond-Langner[5] referred to this as mutual pretense. This protection, however, actually led to isolation, anxiety, and fear in dying children[5,6,12] and consumed the emotional and physical energy of parents as they tried to keep a secret.[11]

Factors other than protection that influenced communication in this population included the communication styles of all involved,[13] parents worrying about their child's physical suffering,[14] differing opinions of protection (patient, parent, and physician),[15] and range of parental roles.[16] Unlike that in dying adults, the trajectory of the treatment for a child with cancer and other life-threatening diseases frequently waxes and wanes. These fluctuations make it difficult to find the right time to discuss end-of-life issues. Physicians, and society as a whole, will continue seeking treatment for a dying child long after they would for many adult patients in similar situations.[2,10,13,17]

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