Catherine (Kasia) Heith – BC Children’s Hospital, British Columbia, Canada
Pediatric intensivist and ethicist with a focus on feminist and narrative ethics as well as improving interprofessional communication around serious illness and dying in the Pediatric ICU.
Featured Article
Rolbiecki, A. J., Washington, K., & Posley, K. (2023). “Everybody Needs to Talk About Their Child”: A Descriptive Phenomenological Study of Bereaved Parents’ Experiences in Digital Storytelling. Omega: Journal of Death & Dying, 91, 4.
Commentary
Rolbiecki et al.’s “Everybody Needs to Talk About Their Child”: A Descriptive Phenomenological Study of Bereaved Parents’ Experiences in Digital Storytelling.1 highlights the power of narrative in processing grief while underscoring the challenges of meaning-making in isolation. The study emphasizes the importance of community, connection, and storytelling for bereaved parents.
Rolbiecki et al. explores the experiences of participating in a Digital Storytelling (DS) workshop for parents to process grief after the death of their child. DS is “a narrative intervention that supports participants’ ability to find meaning in their life experiences by combining recorded narrative with chosen artifacts” into a DS.1 Data originated from a study on DS with 13 bereaved parents which included primarily white (80%), female (86.7%), parents whose children had died following illness (23%), suicide or accidental overdose (31%), or accident or homicide (46%).1,2 Researchers asked participants about the experience of sharing their own stories with others as well as the experience of hearing others’ stories. Connection and community were the primary themes that emerged through a descriptive phenomenological analysis.
Both DS and phenomenology center patients/families and value storytelling as a means of understanding lived experience and constructing meaning. Phenomenology examines how we “perceive and understand phenomena, and the meaning phenomena have in our subjective experience.”3 It emphasizes Heidegger’s concept of a ‘lifeworld’— an individual’s reality as shaped by the world in which they live.3 The death of a child, however, disrupts the world and many of the values and expectations parents once held. Child death “defies what we perceive to be the natural and expected progression of life.”1 This as a “crisis of meaning” in which “the orderliness of the universe seems to be undermined.”4 This leaves parents to fill what Frankl described as an “existential vacuum.”4
Walker’s ‘Expressive-Collaborative Model’5 of moral philosophy provides both a framework for this study’s findings and a foundation for clinicians supporting families through moral “crises.” Rejecting abstract and universal moral frameworks, Walker argues that moral understandings are constructed (and re-constructed) within communities and relationships.5 For bereaved parents, such communities are often absent due to the rarity and isolation of child loss. Rolbiecki found that parents benefit from access to a shared moral community—one in which only other bereaved parents can help shape the moral values and meanings that emerge from child loss. “When parents do not have an outlet to connect and share stories about their child’s death, they have limited opportunity to process the experience, which can also limit their ability to make meaning of their child’s death.”1 The power of DS stems from connection and community, enabling parents to redefine their moral worlds and selves. Storytelling, becomes both an epistemological and existential act, allowing parents to articulate and reconstruct their experiences, and with that, their identities. Rolbiecki found that “…participants were better able to embody their identities as bereaved parents,” to make meaning through their connections with other bereaved parents, and to maintain an ongoing and redefined connection with their child.1 DS provided parents with a new moral community where experiences could be shared, validated, and understood, allowing parents to begin shaping a new identity integrating child loss.1
Walker describes what Rolbiecki demonstrated; that “[i]n all of its expressions, morality is fundamentally interpersonal; it arises out of and is reproduced or modified in what goes on between or among people. In this way, morality is collaborative; we construct and sustain it together.”5
We have a duty to build and sustain moral communities with parents while their children are alive. Our role is not only to respond in moments of crisis but to partner with parents in co-authoring coherent narratives as they navigate ongoing disruptions to identity and the values that ground them. Crises of meaning often emerge from the accumulation of smaller disturbances—what Warren calls “housekeeping issues.”6 Ethical housekeeping concerns “one’s everyday life and ongoing relationships,” where the situation is “ongoing rather than resolved,” and “decisions need to be made continually.”6 These issues “…require us to reassess large parts of our lives: our character traits, how we think about ourselves, and how we relate to others.”6 Coherent narratives are not merely a series of significant events; they are carefully assembled from smaller moments and evolving relationships both with others and ourselves. These fragments, woven together, form stories through which meaning emerges. Our task is to accompany parents in this ongoing process of storying and re-storying their experiences—to co-author meaning with them as they navigate uncertainty, loss, and hope. Doing so requires recognizing that supporting families in decision-making is itself a moral act—one grounded in shared moral understanding and sustained community.
References
- Rolbiecki AJ, Washington K, Posley K. “Everybody Needs to Talk About Their Child”: A Descriptive Phenomenological Study of Bereaved Parents’ Experiences in Digital Storytelling. Omega (United States). Published online September 1, 2023.
- Rolbiecki AJ, Washington K, Bitsicas K, Teti M, Temple D, Lero C. Digital storytelling: Narrating meaning in bereavement. Death Stud. 2025;49(1):68-76.
- Neubauer BE, Witkop CT, Varpio L. How phenomenology can help us learn from the experiences of others. Perspect Med Educ. 2019;8(2):90-97.
- Wheeler I. Parental bereavement: The crisis of meaning. Death Stud. 2001;25(1):51-66.
- Urban Walker M. Moral Understandings: A Feminist Study In Ethics. Second. Oxford University Press; 2007.
- Warren VL. Feminist directions in medical ethics. Hec Forum. 1992;4(1):19-35.
Trends in Pediatric Palliative Care Citation List; 2025; Issue 10
Click the links below to view this months full list in desired format.
Autrey, A. K., Rifkin-Zenenberg, S., Hills, T., Salant, J., May, R., Rabinowitz, E., Heneghan, C., Drach, L., Jones, E., & Thienprayoon, R. (2025). Standardized Assessment of Patient Experience in Pediatric Palliative Care: A National Collaboration. Journal of Pain and Symptom Management.
Barbosa, S. M. M., Santana, V. T. S., Goncalves, C. R. L., Santos, E. S. T., Takahashi, P. E., Costa, P. H. L. S., Alves, K. S., Lebrao, C. W., & Castro, A. (2025). Palineo score: Development of a score to identify the palliative care needs of neonatal patients admitted to the neonatal intensive care unit. Critical Care Science, 37, e20250039.
Benedetti, F., Giacomelli, L., Papa, S., Verzeletti, V., & Agosto, C. (2025). Cultural, Religious, and Spiritual Influences on Communication in Pediatric Palliative Care: A Narrative Review Focused on Children with Severe Neurological Conditions. Children, 12(8).
Burlo, F., Bortolin, I., Grasso, D. L., Oveglia, A., Barbi, E., De Zen, L., Taucar, V., & Peri, F. (2025). Safety and feasibility of tracheostomy and gastrostomy home replacement: A five-year experience from a palliative care center. Frontiers in Pediatrics, Volume 13-2025.
Champion Mpsych, M. J., & Kilcullen Mpsych, P. M. (2023). Complicated Grief Following the Traumatic Loss of a Child: A Systematic Review. Omega: Journal of Death & Dying, 91, 4.
De Clercq, E., Vokinger, A. K., Pedraza, E. C., von Bueren, A. O., Tinner, E. M., & Michel, G. (2025). Cooling facilities in paediatric palliative care: A ritual form of mourning? A scoping literature review. Mortality, 30(3), 818–836.
Deming, R. S., Porter, A. S., Wojcik, M. H., Wolfe, J., & Snaman, J. M. (2025). Supporting Parents of Infants With Chronic Critical Illness in the Transition From NICU to Home. Pediatrics, 156(3), e2024070143.
Dumbovic, N., Martinec, I., & Vincek, J. (2025). Challenges and dilemmas in providing continuous pediatric palliative care in Varazdin County—Two narrative case presentations. Paediatria Croatica, 69(3), 172EP – 176.
Grygus, I. M., Nagorna, O. B., & Mahlovanyy, A. V. (2025). Task of Physical Therapy in Pediatric Palliative Care. Rehabilitation and Recreation, 19(2), 93–100.
Hoffmans-Holtzer, N., Kunnen, B., Tims, O., de Pree, I., Slagter, C., Acht, M. O. V., Hoogeman, M., & Petit, S. (2025). Increasing patient comfort in palliative radiotherapy with a newly developed mattress: A nonrandomized clinical trial. Clinical and Translational Radiation Oncology, 54, 101017.
Kurian, J. J., Fan, J. N., Stratton, A., & Blasick, S. (2025). Piloting the first pediatric-specific serious illness conversation program training at Baylor Scott & White. Proceedings (Baylor University. Medical Center), 38(5), 652–655.
Lin, G. L., & Treat, L. (2025). Impacts of a Novel Pediatric Neuropalliative Medicine Clinic: Characterization of Referrer Feedback. SSRN.
Mercante, A., Siden, H., Baker, J. N., Papadatou, D., Huijer, H. A. S., Zernikow, B., Hauer, J., & Benini, F. (2025). Insights From the International Consensus on Neuro-Irritability in Pediatric Palliative Care Expanding the Known, Challenging the Unknown. Neurology: Clinical Practice, 15(5), e200525.
Mueller, D., Drury, H., Shepherd, J., Monroe, M., & Davies, C. C. (2025). Hospital-Based Perinatal Bereavement and Palliative Care: A Descriptive Study to Measure Patient Satisfaction and Care Provided. Journal of Nursing Administration, 402–406.
Murray, C. R., Walker, E. R., Savage, M., & Johnson, K. (2025). Centering Community Voices: Evaluating Stakeholder Engagement in Pediatric Palliative Care Research. Journal of Pain and Symptom Management.
Pyke-Grimm, K. A., Brown, M., Youssef, A., Spengler, M., Hollander, S. A., Feudtner, C., & Char, D. (2025). Clinician Perspectives on Compassionate Deactivation of Pediatric Ventricular Assist Devices. ASAIO Journal, 10.1097/MAT.0000000000002530.
Raap, E., Weille, K. L., & Dedding, C. (2024). ‘“I am the mother of the kind of child you dread having”’: Experiences of living with chronic sorrow among parents with a disabled child. Journal of Health Psychology, 30, 30.
Rolbiecki, A. J., Washington, K., & Posley, K. (2023). “Everybody Needs to Talk About Their Child”: A Descriptive Phenomenological Study of Bereaved Parents’ Experiences in Digital Storytelling. Omega: Journal of Death & Dying, 91, 4.
Ruth, O., Amiri, S., Baughcum, A. E., Fortney, C. A., Robinson, J., Munoz-Blanco, S., & Kukora, S. K. (2025). Meeting the emotional and behavioral health needs of bereaved NICU parents. Journal of Perinatology, 45(7), 1023EP – 1028.
Santamaría-Gutiez, R., González-Sala, F., & Lacomba-Trejo, L. (2025). The Role of Attachment in Perinatal Loss: A Systematic Review. Journal of Loss & Trauma, 30(6), 813–850.
Senanayake, P., & Oldroyd, J. (2025). The Unmet Needs of Parents in Pediatric Palliative Care: A Qualitative Systematic Review. Journal of Palliative Medicine.
Silva-Rodrigues, F. M., Hinds, P. S., Dos Santos, M. R., da Silva, L. T. P., & Szylit, R. (2025). “Being a Good Parent” for Seriously Ill Children in Brazil: A Qualitative Semantic Analysis. Nurs Crit Care, 30(5), e70149.
Vicenzi, V., Sousa, I. T. E., & Piva, J. P. (2025). Risk Factors for Bloodstream Infections in Critically Ill Children: Gram-Negative Predominance and Complex Chronic Conditions. Acta Paediatrica, International Journal of Paediatrics.
Zanin, A., la Piana, C., Brigiari, G., Gregori, D., Divisic, A., Bressan, S., Zangardi, T., Masiero, S., & Benini, F. (2025). Retrospective Evaluation of Pediatric Emergency Department Visits of Children With Medical Complexity in a Tertiary Care Center in Italy. Pediatric Emergency Care.