Suzanne L Nuss1. 1. Author Affiliation: Department of Nursing Research and Quality Outcomes, The Nebraska Medical Center, Omaha.
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.
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.