ArticlePediatric blood & cancer2020
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents.
Article in Pediatric blood & cancer, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
18 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.Palliative medicine · 2023Pooled it
- Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review.Pediatric blood & cancer · 2022Pooled it
- Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practice.Intensive & critical care nursing · 2026Article
- Preparing for a Child's End of Life: Parent Perspectives.Pediatrics · 2025Article
- Suffering is a Useful Concept When We Understand the Sufferer.The American journal of bioethics : AJOB · 2025Article
- Advance Care Planning Conversations in Pediatric Patients with Refractory Oncologic Disease.Children (Basel, Switzerland) · 2025Review
- Forging an easier path through graduation: Improving the patient transition from paediatric to adult critical care.World journal of critical care medicine · 2025Review
- Development and validation of the PACPN: Parents' Attitudes Towards Crying Pediatricians and pediatric Nurses questionnaire.European journal of pediatrics · 2025Article
- Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning.JAMA network open · 2024Article
- Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit.Journal of palliative medicine · 2023Article
- Pediatric Oncology, Palliative Care and Low- or Middle- Income Countries: A Call for Action.Global pediatric health · 2023Review
- Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology.Children (Basel, Switzerland) · 2022Article
- Palliative Care in Paediatric Oncology: an Update.Current oncology reports · 2022Review
- Palliative Care in Pediatric Oncology and Hematopoietic Stem Cell Transplantation.Current oncology reports · 2022Review
- Bereaved Families: A Qualitative Study of Therapeutic Intervention.Frontiers in psychology · 2022Article
- Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review.BMC palliative care · 2021Article
- Current Grief Support in Pediatric Palliative Care.Children (Basel, Switzerland) · 2021Review
- Neonatal End-of-Life Symptom Management.Frontiers in pediatrics · 2020Review
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6 authors.
Funding
Abstract
backgroundMost parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
methodsCaregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.
resultsApproximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.
conclusionsThrough quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.
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