Callie Daniels-Howell – International Children’s Palliative Care Network, USA
Dr. Callie Daniels-Howell is Research Manager at the International Children’s Palliative Care Network, where she leads research and field-building initiatives to advance palliative care for children with life-limiting conditions worldwide. She holds a PhD in Global Health and Anthropology, and her research uses narrative and ethnographic methods to explore how families in Kenya experience and make sense of childhood cancer, dying, and death.
Featured Article
Anspacher, M. (2026). Ronan and the Endless Sea of Stars: A Graphic Memoir. Journal of Palliative Medicine, 29(3), 409–410. (192937207).
The day before I reviewed and selected the article for this commentary, a friend reached out, asking what resources or advice I might offer as he supported friends who had very recently lost their baby. He perceived the mother to be finding ways to move through the experience, but the father, he said, was struggling greatly. He wanted my perspective as an anthropologist and researcher whose work focuses on end-of-life care and bereavement for families whose children have died in Kenya. My first thought was of how little I already knew there would be for him: a paucity of research, and even fewer resources still, for a father grieving an infant.
When I came across both Denhup’s work on fathers’ grief1 and Anspacher’s review of Rick Louis’ graphic memoir2, I was eager to learn from each. Denhup’s phenomenological account of the nature of fathers’ grief is insightful and critical for advancing more inclusive, caring bereavement support across contexts. But it was Anspacher’s review of Ronan and the Endless Sea of Stars: A Graphic Memoir that stood out to me.
Graphic medicine, the use of comic art to tell stories and advance understandings of health and illness, is an emerging field3. Ronan and the Endless Sea of Stars was written by a father, Rick, about his experience of his child, Ronan, living and dying with Tay-Sachs4. It follows Ronan’s birth, diagnosis, illness, and subsequent death, and the different ways his parents cope with this tragedy, ultimately leading them to marital separation. The book is about Rick’s means of coping, meaning-making, and honouring his child’s life.
As Anspacher describes, graphic literature offers a unique mechanism for placing the reader inside the experience of this family. She draws out not only the depth of emotion portrayed, such as the impact of different communicative encounters with physicians, but their complexity. The book makes visible multiple perspectives and experiences occurring at once: in one panel, the father says something to the mother about her desire for another child; in a panel to the side, the mother’s internal experience of receiving those words is reflected. Anspacher also describes the role of humour, where illustration helps the reader see it as one of many emotions that can exist alongside sorrow, and, in showing more than words can, clearly does not replace it.
As Anspacher highlights, books like this are critical for our field: not only for the deeper understanding they offer of parental experiences, and paternal experiences in particular, but for reminding and encouraging their multifaceted, creative representation. This memoir, instead, asks us not to conclude or clarify the experience, but to inhabit it. It meets a father directly in his grief, and in his celebration of his child’s life. Sometimes in research we purposely declutter our words and language, removing the “messiness”. Often, we try to render the unsayable in neat, direct terms, and at times, we reshape our language to speak to one another in ways that put the words out of reach of the very families and fathers who first shared their voices with us.
When my friend asked for something to place in a grieving father’s hands, I only knew of scientific articles written in academic formality, and only a few of those exist. Denhup’s and others’ work on paternal grief is critical for informing how practitioners might shape care for fathers across cultural contexts1,5-10. But this graphic memoir is something that I could hand a father directly. His experience may not be singularly identical to Rick’s, but I imagine that, in its multiplicity, he may find a window in the book through which to see himself. Engaging with this review and the memoir itself, I am reminded that words can be limited in capturing the messy, contradictory, multifaceted experience of being human, particularly around death, grief, and the love of children.
I’m grateful to Anspacher for raising this memoir to the attention of the palliative care community, and for underscoring why it matters. I am glad for the chance to share it with a grieving father. I am also challenged to consider how I, too, might more creatively and wholly represent the knowledge I generate, so that it can be heard and felt by all who encounter it, whether researchers, practitioners, or families themselves.
References
- Denhup C. Fathers’ grief in action. Arch Psychiatr Nurs. 2026 Apr 1;61.
- Anspacher M. Ronan and the Endless Sea of Stars: A Graphic Memoir – Melanie Anspacher, 2026. J Palliat Med [Internet]. 2026 Feb 17 [cited 2026 Jun 24].
- Graphic Medicine: Ill-Conceived & Well-Drawn! | NLM [Exhibitions] [Internet]. U.S. National Library of Medicine; [cited 2026 Jun 24].
- Huang HY, Huang HM, Chen SH, Lee TY. Taiwanese fathers’ experiences following the death of a child to cancer. Death Stud. 2025. Located at: Scopus.
- Mirlashari J, Nikbakht Nasrabadi A, Holsti L, Ghorbani F, Hosseini MB, Fadaei Z. Caring for the Bereaved Parents in the NICU: Fathers – The Missing Piece of the Puzzle. J Perinat Neonatal Nurs. 2022;36(4):E31–9. Located at: Scopus.
- Akard TF, Duffy M, Hord A, Randall A, Sanders A, Adelstein K, et al. Bereaved mothers’ and fathers’ perceptions of a legacy intervention for parents of infants in the NICU. J Neonatal-Perinat Med. 2018;11(1):21–8. Located at: Scopus.
- Denhup C. Hurricane-Force Grief: A Mirror of Fathers’ Love. Omega U S. 2024. Located at: Scopus.
- Denhup C. Fathers’ Perspectives of Bereavement Support. OMEGA – J Death Dying. 2025 Aug 26;00302228251371767.
- Denhup C. “Trying to Find North”: Fathers Voice the Nature of Their Bereavement. OMEGA – J Death Dying. 2024 Mar 6;00302228241238383.
TRENDS 2026; Issue #07
Click the links below to view this months full list in desired format.
Ahlerup, M., Malmgren, J., Castellheim, A. G., Holmen, J., Ingemansson, O., Sandman, L., Herges, H. O., & Block, L. (2026). Swedish Intensive Care Physicians’ Attitudes Towards Withholding or Withdrawing Life-Sustaining Treatment in Critically Ill Children. Acta Anaesthesiologica Scandinavica, 70(6), e70256. (2045523514).
Anspacher, M. (2026). Ronan and the Endless Sea of Stars: A Graphic Memoir. Journal of Palliative Medicine, 29(3), 409–410. (192937207).
Barton, H. A. (2026). Coping mechanisms used by nurses caring for dying children: A literature review. Nursing Children and Young People, 38(3), 25–31.
Berry, S. N., Nilson, R. A., & Verhoff, C. (2026). Exploring Parental Needs in the Year Following Perinatal Loss. MCN: The American Journal of Maternal Child Nursing, 51(3), 162–169. (193410911).
Burlo, F., De Zen, L., Pagnini, A., & Travan, L. (2026). Hospital organisation and healthcare providers’ barriers in the management of fetuses and newborns affected by life-limiting or life-threatening conditions in Italy: A national survey. European Journal of Pediatrics, 185(5), 340. (2045254250).
Davis, E., Grossoehme, D. H., Ajayi, T., Baker, J. N., Hinds, P. S., Humphrey, L., Jarrell, J. A., Thienprayoon, R., & Friebert, S. (2026). Pediatric home-based hospice and palliative care: A scoping review. BMC Palliative Care. (651212131).
Denhup, C. (2026). Fathers’ grief in action. Archives of Psychiatric Nursing, 61, N.PAG-N.PAG. (192820235).
Ekberg, S., Danby, S., Pitt, E., Ekberg, K., Watts, J., Weinglass, L., Bluebond-Langner, M., Langner, R., Bradford, N., Yates, P., Fleming, S., Delaney, A., Duffield, J., & Herbert, A. (2026). Influence of multi-party consultations on child involvement in clinical encounters: An observational study of paediatric palliative care. Patient Education and Counseling, 149.
Fahner, J. C., van Delden, J. J. M., Rietjens, J. C., van der Heide, A., & Kars, M. C. (2026). Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions: A Qualitative Study of Families and Clinicians Using the IMplementing Pediatric Advance Care Planning Toolkit +. Children, 13(4), 486. (2045069846).
Floredin, I., Mitchell, P. M., Husbands, S., Neilson, S., & Coast, J. (2026). Assessing the feasibility of use and content validity of ICECAP-CPM with bereaved family members of young people who died from serious illness: A UK think-aloud study. BMC Palliative Care. (651058041).
Harrop, E., Abbott, Z., Hopewell-Kelly, N., Goss, S., Byrne, C., Bayliss, J., Jones, K., Clabburn, O., Warren, R., Penny, A., & Leadbitter, H. (2026). ‘I’m tired of justifying why my life has stopped’: A qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavement. Palliative Care and Social Practice, 20, 1–16.
Hauptman, L., Arnolds, M., Brownson, R., & Marks, A. (2026). Considering Parental Requests to Withdraw Life-Sustaining Care in Seriously Ill Children: A Case Report and Ethical Analysis. Journal of Pain & Symptom Management, 71(5), e638–e642. (192905237).
Herold, B. T., Dussel, V., Hauer, J., Requena, M. L., DeCourcey, D. D., Avery, M. E., Snaman, J. M., & Wolfe, J. (2026). Development of a parent survey to identify children with severe neurologic impairment and distress. Journal of Pain and Symptom Management, 71(6), e776.
Hung, C. W., & Wu, L. M. (2026). Impact of a shared pediatric palliative care program on end-of-life care trends among children: A 10-year retrospective study in Taiwan. BMC Palliative Care. (651112325).
Hunt, K., Wright, D., Almahadeen, R., Dijkstra, J., Wagland, R., Randall, D., Uhm, S., Richardson, A., & Darlington, A. S. (2026). Development and Testing of VOICES-C: A Questionnaire for Assessing the Quality and Experiences of End-of-Life Care for Children and Their Families. Journal of Palliative Care.
Joren, C. Y., Verhagen, A. A. E., & Lantos, J. D. (2026). Paediatric palliative care and paediatric euthanasia: Clarifying a moral continuum. The Lancet Child and Adolescent Health.
Kadden, D., Palmaccio-Lawton, S., Herrmann, L. E., & Nee, K. (2026). Navigating birth plans: Illuminating neonatal provider perspectives in prenatally diagnosed complex fetal anomalies. Journal of Perinatology.
Kemna, M. M., Aris-Meijer, J. L., Verhagen, A. A. E., Teunissen, S. C. C. M., Engel, M., & Kars, M. C. (2026). Interdisciplinary collaboration in pediatric palliative care: A qualitative study on barriers and facilitators as perceived by parents and healthcare professionals. European Journal of Pediatrics, 185(6), 419. (2045634926).
Kim, E. S., Kim, S., Braybrook, D., Min, H. G., Lee, Y., & Harding, R. (2026). Development of the Korean version of the Children’s Palliative care Outcome Scale. Journal of Pain and Symptom Management. (651167765).
Lastrapes, K. K., Bell, L. B., King, Q., Spilman, C., & Frenchman, E. (2026). From the C-Suite to the Living Room Couch: Making the Case for Home-Based Pediatric Palliative Care. Journal of Pain and Symptom Management, 71(6), e1056–e1057.
Loughnan, S. A., Horey, D., Wojcieszek, A. M., Andrews, C., Gautam, R., Carty, M., Ellwood, D., Forbes, M., Gordon, A., Jennings, B., Lohan, A., Laporte, J., Seeho, S., Shand, A., Boyle, F. M., & Flenady, V. (2026). Identifying Key Areas to Improve Care for Families Around the Time of Stillbirth or Neonatal Death: A Survey of Maternity Services in Australia. Australian & New Zealand Journal of Obstetrics & Gynaecology, 66(2), 1–9. (193259805).
Majumdar, A., & Sanchez Marco, S. (2026). Conflicts in Best Interest; Infants with severe neuromuscular disorders presenting to UK Courts. Journal of Neuromuscular Diseases, 22143602261436072. (651121816).
Minton, E. A., Krszjzaniek, E., Wang, C. X., Fox, A. K., & Anthony, C. M. (2026). Cultural differences on baby loss experiences: A comparison of the US and New Zealand. Death Studies, 50(5), 724–738. (192729193).
Naqvi, M. Z., Warsame, F., Lovig, Z. W., & Thorvilson, M. (2026). Caring for Muslim Children at the End of Life: Faith-Informed Guidance for Pediatric Clinicians. Journal of Pain and Symptom Management. (2045950416).
Porter, A. S., McCarthy, S., Heneghan, C. E., Dussel, V., Snaman, J. M., & Wolfe, J. (2026). Precision in Pediatric Palliative Care: Looking Ahead to the Next Twenty-Five Years. Journal of Pain and Symptom Management, 71(6), e892–e893.
Rosado, V. L. S., Neves Júnior, T. T., Oliveira, H. A., Silveira, B. R. D., Azevedo, A. T. L., & Pinto, E. S. G. (2026). Breaking bad news by pediatric nurses: A scoping review. Rev Gaúcha Enferm, 47, e20250295.
Safarifard, R., Molati, A., Corcoran, Y., Kiernan, G., Courtney, E., Mitchell, J., Akard, T. F., & Lambert, V. (2026). An exploratory study of the feasibility and acceptability of a digital storytelling intervention in paediatric palliative care in Ireland. Journal of Pediatric Nursing, 89, 241–249.
Sebova, A., Fajnerova, I., Drnkova, L., & Hrdlickova, L. (2026). Evaluating virtual reality for anxiety reduction in children and adolescents with life-limiting conditions: A randomized pilot study. BMC Palliative Care. (651242513).
Svynarenko, R., Weaver, M. S., Williams, A., Autrey, A. K., Cortezzo, D. E., Wilpers, A. B., Cohen, A. D., & Lindley, L. C. (2026). Geographic Distance Between Perinatal and Pediatric Palliative Care Services and Implications for Practice Standards. American Journal of Hospice and Palliative Medicine.