Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Jan;72(1):e31426.
doi: 10.1002/pbc.31426. Epub 2024 Nov 6.

Support Experiences and Wishes of Bereaved Parents After the Loss of Their Child to Cancer

Anna Katharina Vokinger  1 , Eddy Carolina Pedraza  1 , Eva Maria Tinner  2   3 , André Oscar von Bueren  4 , Katrin Scheinemann  1   5   6 , Eva Bergstraesser  3 , Gisela Michel  1 , Eva De Clercq  1
Affiliations
Free article

Support Experiences and Wishes of Bereaved Parents After the Loss of Their Child to Cancer

Anna Katharina Vokinger et al. Pediatr Blood Cancer. 2025 Jan.
Free article

Abstract

Introduction: The death of a child has a tremendous impact on parents' lives. The experience of parents who have lost a child to cancer may differ from other bereavement experiences, including other childhood and adulthood causes of death, because of the uncertainty of the prognosis, the aggressive treatment, and the potential for regret about treatment decisions. Bereavement care remains scarce, and effective interventions to meet the diverse needs of parents have not been defined.

Objective: To provide insights on bereaved parents' experiences, their needs, and wishes of support following the loss of their child to cancer.

Methods: We conducted 18 qualitative, in-depth, semi-structured interviews with 23 bereaved parents (seven fathers, 16 mothers), and used reflexive thematic analysis to analyze the data.

Results: Parents received both informal and professional support. Regarding informal support, parents expressed a high level of ambivalence rooted in grief illiteracy. Parents also recognized their own struggles to express what forms of informal support they would have liked to receive. Support provided by healthcare professionals, institutions, and organizations involved in the children's care or in bereavement was inconsistent due to personnel time constraints, interpersonal relationships, or disruptions due to the COVID-19 pandemic. These factors could result in parents not having access to certain forms of support or not receiving long-term support.

Conclusion: Improving grief literacy may strengthen informal support and make discussions of grief and death less taboo. Institutional policies, training, and networking may help to ensure that support provided by healthcare professionals, institutions, and organizations is less vulnerable to inconsistencies.

Keywords: bereavement support; childhood cancer; parents; pediatric oncology; pediatric palliative care.

PubMed Disclaimer

References

    1. C. M. Sanders, “A Comparison of Adult Bereavement in the Death of a Spouse, Child, and Parent,” Omega (Westport) 10, no. 4 (1980): 303–322, https://doi.org/10.2190/x565‐hw49‐chr0‐fyb4.
    1. W. Middleton, B. Raphael, P. Burnett, and N. Martinek, “A Longitudinal Study Comparing Bereavement Phenomena in Recently Bereaved Spouses, Adult Children and Parents,” Australian and New Zealand Journal of Psychiatry 32, no. 2 (1998): 235–241, https://doi.org/10.3109/00048679809062734.
    1. A. R. Rosenberg, K. S. Baker, K. Syrjala, and J. Wolfe, “Systematic Review of Psychosocial Morbidities Among Bereaved Parents of Children With Cancer,” Pediatric Blood & Cancer 58, no. 4 (2012): 503–512, https://doi.org/10.1002/pbc.23386.
    1. J. M. Youngblut, D. Brooten, G. P. Cantwell, T. Del Moral, and B. Totapally, “Parent Health and Functioning 13 Months After Infant or Child NICU/PICU Death,” Pediatrics 132, no. 5 (2013): e1295–301, https://doi.org/10.1542/peds.2013‐1194.
    1. P. K. Lannen, J. Wolfe, H. G. Prigerson, E. Onelov, and U. C. Kreicbergs, “Unresolved Grief in a National Sample of Bereaved Parents: Impaired Mental and Physical Health 4 to 9 Years Later,” Journal of Clinical Oncology 26, no. 36 (2008): 5870–5876, https://doi.org/10.1200/JCO.2007.14.6738.