Redefining Parenthood: Surviving the Death of a Child
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.
2013-09
Nuss SL
Cancer Nursing
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/NCC.0b013e3182a0da1f" target="_blank" rel="noreferrer">10.1097/NCC.0b013e3182a0da1f</a>
Collaborative clinical research on end-of-life care in pediatric oncology
U.S. Gov't; Attitudes; PedPal Lit; Multi-site Ethics; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Nursing Models; Adolescent Adolescent Psychology Attitude of Health Personnel Attitude to Death Attitude to Health Child Child Psychology Clinical Nursing Research/; organization & administration Communication Cooperative Behavior Decision Making Forecasting Health Knowledge; P.H.S. Terminal Care/organization & administration; Practice Health Priorities Humans Models; Psychological Neoplasms/nursing/psychology Oncologic Nursing/organization & administration Parents/psychology Pediatric Nursing/organization & administration Practice Guidelines Research Design Research Support
OBJECTIVES: To present an overview of research into end-of-life (EoL) care for pediatric patients with cancer and to describe research completed by a newly formed collaboration of researchers. DATA SOURCES: Professional group position papers and guidelines; research studies. CONCLUSION: Studies to date in pediatric EoL care used retrospective, descriptive, or pilot intervention designs, have been conducted in single-institution settings, and have included small numbers of patients. Most studies have explored perspectives of parents and health care professionals but have omitted the perspective of the dying child. IMPLICATIONS FOR NURSING PRACTICE: Advancing the science of EoL care will depend on intervention-based clinical trials that include the perspective of the dying child in addi tion to parents and health care professionals.
2005
Nuss SL; Hinds PS; LaFond DA
Seminars In Oncology Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.soncn.2004.12.011" target="_blank" rel="noreferrer">10.1016/j.soncn.2004.12.011</a>
Consensus statement: collaborative clinical research on end-of-life care in pediatric oncology
Clinical Research; Collaboration; Collaborative; Pediatric oncology
2005
Stutzer CA; Drew D; Himelstein BP; Hinds PS; LaFond DA; Nuss SL; Rushton CH
Seminars In Oncology Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.soncn.2004.12.014" target="_blank" rel="noreferrer">10.1016/j.soncn.2004.12.014</a>