Palliative Care of Children With Brain Tumors: A Parental Perspective
Open accessAbstract
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
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Bereaved parents' perspectives reveal a need for improved and cohesive care transitions, particularly in the form and feasibility of home care and respite support services knowledgeable on pediatric and adolescent psychosocial and symptom care needs.
“Perspectives of bereaved parents reveal a need for improved and cohesive care transitions, particularly in the form and feasibility of home care and respite support services knowledgeable on pediatric and adolescent psychosocial and symptom care needs.[17,40–42]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [41]
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Baker, A., Vasudeva Bhat, K., Moreira, D. C., & Qaddoumi, I. A. (2025) · Frontiers in Oncology · doi:10.3389/fonc.2025.1618469 · Cited by 5 · see citing works
Addressing 10 Myths About Pediatric Palliative Care
Sadler, K., Khan, S. J., Alghamdi, K., Alyami, H. H., & Nancarrow, L. (2023) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091231174202 · Cited by 5 · see citing works
“32 In a qualitative study of 25 parents of 17 children who died of cancer, Zelcer et al 3 33 found that parents did not discuss the impending death because they were themselves in denial regarding their child ’ s prognosis.”
BackgroundSlaninka, M., Krajmer, P., & Kolenová, A. (2021) · Bratislavské lekárske listy/Bratislava medical journal · doi:10.4149/bll_2021_091 · Cited by 5 · see citing works
The meaning of dying and death for children, their carers, and families: a scoping review
Lamb, C. M., Ramer, K., Amodu, O. C., & Groenenboom, K. (2023) · BMC Palliative Care · doi:10.1186/s12904-023-01295-1 · Cited by 4 · see citing works
“However, talking about death is not a conversation that all parents feel comfortable or capable of having with their dying child [18, 26].”
BackgroundMehta, N. H., Prajapati, M., Aeleti, R., Kinariwala, K., Ohri, K., McCabe, S. M., Buller, Z., Leskinen, S., Nawabi, N. L. A., Bhatt, V., et al. (2024) · Journal of Clinical Medicine · doi:10.3390/jcm13164871 · Cited by 5 · see citing works
“This therapeutic alliance was exemplified by nurses caring for brain tumor patients who talked and listened to patients’ spiritual concerns, building a relationship with the patient that extended past social niceties [20].”
BackgroundInfluentialPreferences for end-of-life care for children with cancer
Knapp, C., & Komatz, K. (2011) · Canadian Medical Association Journal · doi:10.1503/cmaj.111557 · Cited by 4 · see citing works
“A 2010 study of 25 parents whose children died from brain tumours found that parents use hope as a coping mechanism.(9) It is therefore difficult to balance hope for a cure with hope for the comfort and dignity of the child.”
BackgroundTatla, S. K., Holsti, L., Andrews, G., Feichtinger, L., Steele, R., & Siden, H. B. (2017) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2017.10.001 · Cited by 4 · see citing works
Palliative Care for Neurologically Injured Patients: Why and How?
Bindu, B., & Rath, G. P. (2019) · Journal of Neuroanaesthesiology and Critical Care · doi:10.1055/s-0038-1675891 · Cited by 4 · see citing works
“47 Therefore, the needs of children are unique and different from adults receiving PC.”
BackgroundPlace of death of pediatric cancer patients in a single institute during 7 years.
Yanai, T., Hirase, S., Matsunoshita, N., Yamamoto, N., Ninchoji, T., Kubokawa, I., Mori, T., Hayakawa, A., Takeshima, Y., Iijima, K., et al. (2012) · PubMed · doi:10.24546/81003962 · Cited by 4 · see citing works
Atout, M., & Carter, B. (2020) · Journal of Child Health Care · doi:10.1177/1367493520949318 · Cited by 4 · see citing works
“Some parents aim to protect their children from potential emotional suffering that might occur if they were given comprehensive details about their condition (Van der Geest et al., 2015; Zelcer et al., 2010).”
BackgroundAtout, M., Hasan, A., Alkharabsheh, A., Al-Tobasi, A. M., & Ali, A. (2024) · Journal of pediatric nursing · doi:10.1016/j.pedn.2024.02.021 · Cited by 3 · see citing works
Resilience in the Care of Children with Palliative Care Needs
Goldstein, R. D. (2016) · Springer eBooks · doi:10.1007/978-3-319-32223-0_7 · Cited by 3 · see citing works
Kuttesch, J. F., Rush, S. Z., & Ater, J. L. (2011) · Elsevier eBooks · doi:10.1016/b978-1-4377-0755-7.00491-7 · Cited by 3 · see citing works
Hammer, N. M., Bidstrup, P. E., Rosthøj, S., Abitz, M., Callesen, M. T., Hjalgrim, L. L., Edslev, P. W., Wolfe, J., Larsen, H. B., & Olsen, M. (2025) · Pediatric Blood & Cancer · doi:10.1002/pbc.31878 · Cited by 2 · see citing works
“Whiledyingathomeispreferredbymanychildrenwithincurable cancer and their families [1–4], it may not be equally accessible for all families [5–9], and inadequate support [10–13] and symptom management [14, 15] in the home setting represent major concerns.”
Illness-related communication experiences of mothers of children with cancer during the end of life
Kebudi, R., Aydın, A., Bingöl, H. D., Soycan, M. E., Yıldırım, Ü. M., Şenol, B. K., & Zülfikar, O. B. (2025) · BMC Palliative Care · doi:10.1186/s12904-025-01918-9 · Cited by 2 · see citing works
“In Western countries, the number of studies on communicating with a dying child is increasing [31, 32].”
Helyar, M., Eamens, M., Coombs, S., Smeal, T., Mherekumombe, M. F., & Jaaniste, T. (2024) · Journal of Palliative Care · doi:10.1177/08258597241284286 · Cited by 2 · see citing works
Jaaniste, T., Helyar, M., Eamens, M., Smeal, T., Coombs, S., & Mherekumombe, M. F. (2025) · Journal of Palliative Care · doi:10.1177/08258597251341039 · Cited by 2 · see citing works
Strukturelle und organisatorische Grundlagen
Zernikow, B., Michel, E., & Garske, D. (2013) · Springer eBooks · doi:10.1007/978-3-642-29610-9_1 · Cited by 2 · see citing works
Descriptions of Comfort in the Social Networks Surrounding a Dying Child
Ångström-Brännström, C., Dahlqvist, V., Strandberg, G., & Norberg, A. (2014) · Nordic journal of nursing research · doi:10.1177/010740831403400302 · Cited by 2 · see citing works
Palliative Care for Children with Brain Tumors
Pearlman, L., Zelcer, S. M., & Johnston, D. L. (2015) · Springer eBooks · doi:10.1007/978-1-4939-1541-5_26 · Cited by 2 · see citing works
Self-citationLobato, M. R. P.-T., Marchena, L. N., de Noriega, Í., Morey-Olivé, M., Paez, P. S., Pérez, E. R., Colino, C. G., Abos, M. G., García, M. T., Labarga, B. H., et al. (2023) · Clinical & Translational Oncology · doi:10.1007/s12094-023-03301-7 · Cited by 1 · see citing works
Xuan, Y., Ji, Z., Li, X., Wang, X., Chen, Y., Liang, W., Fan, L., & Hu, X. (2025) · Child Care Health and Development · doi:10.1111/cch.70145 · Cited by 1 · see citing works
“Research indicates that following a child's cancer diagnosis, parents often express a longing for hope and emphasize the difficulty of maintaining hope during such challenging times (Zelcer et al. 2010).”
Oetting-Roß, C., Ullrich, C., Schnepp, W., & Büscher, A. (2016) · Forum qualitative Sozialforschung · doi:10.17169/fqs-17.2.2627 · Cited by 1 · see citing works
Zollenkop, G. B. (2014) · Elektronische Hochschulschriften der LMU München (Ludwig-Maximilians-Universität München) · doi:10.5282/edoc.17224 · Cited by 1 · see citing works
Jones, B. L., Contro, N., & Koch, K. D. (2014)
Integrating Palliative Care into the Ongoing Care of Children with CNS Tumors
Baker, J. N. (2018) · Springer eBooks · doi:10.1007/978-3-319-43205-2_16
Access to Pediatric Hospice and Palliative Care
Lindley, L. C., & Keim‐Malpass, J. (2019) · doi:10.1093/med/9780190862374.003.0067
L'esperança des d'una perspectiva professional
Suñol, M. G. M., & Ruiz, M. T. E. (2013) · Pediatria catalana: butlletí de la Societat Catalana de Pediatria
Siqueira, H. B. D. O. M., Gomez, R. R. F., Saltareli, S., da Silva, C. L., dos Santos, M. A., & Sousa, F. A. E. F. (2020) · Nursing Edição Brasileira · doi:10.36489/nursing.2020v23i260p3516-3522
“enfrentamento de barreiras capazes de diminuir a qualidade do manejo(22).”
BackgroundCommunication with Dying Children: Perspective from Turkish MothersPreprint
Kebudi, R., Aydın, A., Bingöl, H. D., Bay, S. B., & ŞENOL, S. B. K. (2022) · SSRN Electronic Journal · doi:10.2139/ssrn.4047648
Rungg, C., & Haselwanter, V. (2024) · JuKiP - Ihr Fachmagazin für Gesundheits- und Kinderkrankenpflege · doi:10.1055/a-2213-6666
Palliative Care for Children with CNS Tumors
Pearlman, L., & Zelcer, S. M. (2024) · Springer eBooks · doi:10.1007/978-3-031-62017-1_27
Self-citationPalliative Care for Children and Adolescents with Non-curative Brain Tumors: A Scoping Review
Bakhtary, M., Sharma, P., Raspin, S., Vemuri, S., & McCarthy, M. (2025) · Journal of Palliative Medicine · doi:10.1089/jpm.2024.0203
Nasab, S. N., McLaughlan, R., & Smith, C. L. (2025) · Medical Humanities · doi:10.1136/medhum-2025-013379
Actual and Preferred Location of Death for Children Known to a Palliative Care Service
Sun, V., Coombs, S., Armitage, N., Dowling, M., & Jaaniste, T. (2026) · OMEGA - Journal of Death and Dying · doi:10.1177/00302228251415138
Palliative Care and End-of-Life Considerations
Cacchione, A., Salata, M., & Ruscio, V. D. (2026) · Springer eBooks · doi:10.1007/978-3-032-18992-9_23
Hope in Pediatric Palliative Care: A Systematic Review
Benešová, H., Janoušková, M., & Loučka, M. (2026) · Children · doi:10.3390/children13081117
- Authors
- Zelcer, S., Cataudella, D., Cairney, A. E. L., & Bannister, S. L.
- Affiliations
- London Health Sciences Centre (CA)
- Venue
- Archives of Pediatrics & Adolescent Medicine
- Publisher
- American Medical Association (AMA)
- Published
- 2010-03-01
- Volume
- 164
- Issue
- 3
- Pages
- 225
- ISSN
- 1072-4710 (ISSN-L)
- OpenAlex
- W2028110907
- Semantic Scholar
- 600bf3cecce67f3c05623c9496fc963e7d10423c
- Cited by
- 99
- References
- 27
- Citations by year
- 2026: 3 · 2025: 7 · 2024: 6 · 2023: 4 · 2022: 6 · 2021: 6 · 2020: 6 · 2019: 4 · 2018: 7 · 2017: 3 · 2016: 4 · 2015: 14 · 2014: 12 · 2013: 5 · 2012: 8
- FWCI
- 5.38
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Locations
- Archives of Pediatrics and Adolescent Medicine (publishedVersion)
- PubMed (publishedVersion)
- Scholarship@Western (Western University) (submittedVersion)
- Funders
- Pediatric Oncology Group of Ontario
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- pediatric brain tumors, palliative care, end-of-life care, parental coping, neurological deterioration, communication loss, anticipatory guidance, home death, symptom management, family support
- MeSH terms
- Activities of Daily Living, Adaptation, Psychological, Adolescent, Adult, Attitude to Death, Brain Neoplasms, Child, Child, Preschool, Female, Home Care Services, Humans, Infant, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Palliative Care, Parents, Focus Groups, Spirituality, Qualitative Research, Young Adult
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