ABOUT THE AUTHOR
Blyth Lord – Courageous Parents Network, USA
Blyth Lord is the founder and executive director of Courageous Parents Network, a non-profit whose mission it is to orient, equip and empower parents and others caring for children living with serious illness and medical complexity.
Featured Articles
Katz, N. T., Hynson, J. L., & Gillam, L. (2026). Shifting sands: How parents engage with the idea of their child’s death. Palliative & Supportive Care, 24, e180.
Szabat, M., & Zurzycka, P. (2026). Parental hope in paediatric palliative care: A systematic review of the ethical issues in evidence-based literature. BMC Medical Ethics, 27(1).
Two recent papers, read together, put language to something Courageous Parents Network has always known from the inside: hope and prognostic awareness are not opposites, and a parent does not have to choose between them; nor, therefore, should clinicians practice to bring parents to make a choice between them. This is something that we at CPN believe to be one of the most fundamental and foundational tensions to accept and make space for to provide compassionate and constructive clinical care to parents of seriously ill children. It is also something that has taken me 12+ years of interviewing parents and clinicians to fully appreciate myself and is the reason I selected these two articles.
Katz et al.’s article about prognostic communication tells us the shape of the problem: engagement with mortality is dynamic and individual. Szabat and Zurzycka’s article supplies the ethical vocabulary for why clinicians shouldn’t try to flatten that dynamism into a checklist and names the possible harms when they do: “epistemic injustice” (a new term for me that means dismissing parental experiential knowledge), marginalization of spiritual or religious frameworks that support parental coping, and testing parental authority.
Katz et al. show empirically that prognostic awareness is not a binary state a parent either has or doesn’t have — it’s fluid, contextual, and often invisible to clinicians. A parent can know their child will die and still not be ready to discuss it; can prioritize comfort and still pursue aggressive treatment; can have an advance care plan in place while simultaneously seeking experimental options. Szabat and Zurzycka’s review of parental hope reaches a parallel conclusion from the ethics literature: hope is not a cognitive error to be corrected with better information. Rather, hope is a coping mechanism, a heuristic for decision-making, and something that can coexist with full awareness of a poor prognosis without being “unrealistic” in any judgment-worthy sense.
The two articles converge on a shared warning to clinicians: the instinct to categorize (parent “gets it” or “doesn’t get it”; hope is “realistic” or “unrealistic”) is itself the problem. Katz calls this a failure to appreciate the “non-binary nature of prognostic awareness.” Szabat and Zurzycka go further and name the ethical stakes directly: labeling a parent’s hope as unrealistic risks what the authors call testimonial epistemic injustice — dismissing parents’ own experiential and often spiritual knowledge because it doesn’t fit a clinical framework. This is a sharp term for what we at Courageous Parents Network describe as the “art not the science” of pediatric palliative care.
Where this logically leads is that the best clinical action is less about giving information and more about holding space for the ambiguous and dynamic needs and activities of parents of seriously ill children. Parents in Katz et al. wanted honesty, but many also wanted time, wanted their name used, wanted to not be rushed into a predetermined agenda. Szabat and Zurzycka’s literature review names Cowfer et al.’s “parallel planning” concept (hoping for the best while preparing for the worst) as one way to operationalize that same idea: not resolving the tension between hope and prognosis, but letting both live side by side. It follows that the quality of the therapeutic relationship between clinician and parent is vitally important and Szabat and Zurzycka name this as an ethical issue that ‘is not merely a matter of communication skills.’
In summary, supporting a family well is not a matter of delivering the correct facts at the correct moment. It is staying present while a parent’s understanding shifts, contradicts itself, and comes back around — and trusting that hope, even hope that coexists with grief, is not confusion to be corrected but a parent doing exactly what a parent should do.
TRENDS 2026; Issue #08
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., Alperin, K., Said, M., Espinel, A. G., Lloyd, A. M., Behzadpour, H. K., & Bauman, N. M. (2026). Use of palliative care services in NICU patients undergoing tracheostomy: Enhancing decision-making and care with an underutilized discipline. International Journal of Pediatric Otorhinolaryngology, 207, 112904. (2046716262).
Berkhout, L. O., Hennus, M. P., Helms, A. C. E., de Man, M. A. C. P., Smeets, W., Spelt, A., & Kars, M. C. (2026). Not just there by chance: A qualitative study on continuity and quality of spiritual care in paediatric palliative care. European Journal of Pediatrics, 185(7), 515. (2046582488).
Brennan, E., & Guerin, S. (2026). “Golden” moments and more in grief talk: Healthcare professionals’ approaches to discussing loss and grief with parents of children with severe neurological impairment. Palliative Medicine. (2046046987).
Chuang, S.-W., Lin, J.-J., Sheu, S.-J., & Lin, C.-P. (2026). Life-Sustaining Treatment Decisions and Parent Caregiving Experiences for Children With Medical Complexity. JAMA Network Open, 9(6), e2617970–e2617970.
Cyrus, K. E., Creel, A. M., Fang, Z., Autrey, A. K., & Surcouf, J. W. (2026). Values in the Neonatal ICU: Insights into Caregiver Priorities. Journal of Pediatrics, 115198.
de Mello, V., de Almeida Campos, M. S., de Araujo Neves, N., Oliveira, T. Z., Rodrigues, J. P. V., Volpon, L. C., Frangiotti, M. A. C., Zanetti, M. O. B., Pereira, L. R. L., & Varallo, F. R. (2026). ICD-10-based screening increased detection of hospitalisations potentially eligible for paediatric palliative care consultation in the emergency department: A validation study. BMC Palliative Care. (651330378).
Delgado-Corcoran, C., Meeks, H. D., Wawrzynski, S. E., Markovitz, B. P., Harman, B., Masih, J. R., Li, K., Harousseau, M., Moore, D., Wilkes, J., & Ames, S. G. (2026). Impact of Specialized Pediatric Palliative Care on Bereaved Parents’ Mental and Physical Health. Journal of Pain and Symptom Management. (2046966883).
Doucet, B., Silberberg, A., Martin-Ancel, A., Grimaux, G., Moure, J., & Balaguer, A. (2026). Key practical aspects of perinatal palliative care: A scoping review mapping and grading their coverage in the literature. BMC Palliative Care. (651453903).
El Ali, M., Licqurish, S., O’Neill, J., & Gillam, L. (2024). Truth-telling to the seriously ill child—Nurses’ experiences, attitudes, and beliefs. Nursing Ethics, 31(5), 930–950. (2025-22042-019).
Elder, A. B. (2024). A review of instruments measuring the basic knowledge of palliative care concepts in teenagers. Illness, Crisis, & Loss, 32(3), 390–401. (2024-87487-003).
Garbujo, G. (2024). The multidimensional grief of siblings: An exploration of story enactment in children’s hospices. Dramatherapy, 45(1), 91–102. (2025-42996-005).
Gerber, A. K., Zimmermann, K., Widler, M., Simon, M., Weid, N. V., Mitterer, S., & Bergstrasser, E. (2026). Quality of life and research benefit and burden in siblings of children with life-limiting conditions: A prospective multicentre cohort study. Journal of Patient-Reported Outcomes. (651295446).
Gijon-Mediavilla, M., Canet Tarres, A., Oviedo Melgares, L., Lopez Fernandez, E., Rojo Conejo, P., & Belda Hofheinz, S. (2026). Health Professionals’ Perceptions of End-of-Life Care in the PICU: Single-Center Survey in Spain. Pediatric Critical Care Medicine. (2046331549).
Godoy Junior, C. A., Penarrubia-San-Florencio, L., Ricart, S., Vilarrubi, S. N., Roure, M. R., Ruiz-Herguido, C., Valls-Esteve, A., Pilli, L., Uyl-de Groot, C., Redekop, W. K., & Kirsten van Deen, W. (2026). Caregiver Preferences for AI-Supported Telemedicine in Pediatric Palliative Care: A Discrete Choice Experiment. Journal of Palliative Care, 8258597261458091. (651457041).
González-Astray, S., Marrero-González, C.-M., González-Pérez, I., Arbelo-Molina, J., García Hernández, A. M., & González-Darias, A. (2026). Experiences of NICU Nurses Facing Perinatal Death: A Phenomenological Study. Children, 13(6), 795.
Hizanu Dumitrache, M., Salim, C., Plesea-Condratovici, A., Mindru, D. E., Duceac Covrig, M., Elkan, E. M., Cristescu Budala, C. L., Gurzu, I. L., Moraru, P. I., Matasaru, M., Matei, M. N., & Duceac, L. D. (2026). Epilepsy in Paediatric Palliative Care: Prevalence, Clinical Correlations and the Development of a Consensus-Based Seizure Management Protocol. Medicina (Kaunas, Lithuania), 62(6).
Hjorth, E., Melin-Johansson, C., Holmberg, B., Godskesen, T., Hagelin, C. L., Ozanne, A., Lagerin, A., & Udo, C. (2026). Navigating existential conversations about life and death with families in paediatric palliative care: A qualitative interview study with healthcare professionals. BMC Palliative Care, 25(1), 165. (2046216815).
Jamieson, T., Liu, J. P., Goldberg, S. W., Ting, J., Fox, M. T., Rosenberg, A. R., Heneghan, C., Kwan, S., Schicho, F., Vitali, S., Kheir, J., Johnston, E. E., Thiagarajan, R. R., Weller, E., Ward, V. L., & Moynihan, K. M. (2026). Social Determinants of Health And End-Of-Life Circumstances in A Quaternary Children’s Hospital. Journal of Pain and Symptom Management. (651333746).
Katz, N. T., Hynson, J. L., & Gillam, L. (2026). Shifting sands: How parents engage with the idea of their child’s death. Palliative & Supportive Care, 24, e180.
Korzeniewska-Eksterowicz, A., Brzezinska, O., Dryja, U., Matczak, D., Sopilnyak, A., Szuszkiewicz, E., Przysło, Ł., Szmyd, K., Jabłońska, K., Krych, P., Wojtków-Zielińska, A., Wąsińska, E., & Niedźwiecki, M. (2024). COVID-19 in pediatric palliative care patients: Multicenter, retrospective cohort study. Palliative Medicine, 38(1), 150–155. (2024-47850-013).
Lin, M., Williams, D. N., Vitcov, G., Sayeed, S., DeCourcey, D. D., Wolfe, J., & Cummings, C. L. (2026). Comfort, benefit, and distress: An exploratory study of research experiences of bereaved parents in the neonatal intensive care unit. Journal of Perinatology. (2046588719).
Monroe, D. M., Arora, M., Bullard, K. A., & Caughey, A. B. (2025). Impact of abortion bans on pregnancies with severe life-limiting foetal anomalies in the United States: A cost-effectiveness analysis. The European Journal of Contraception and Reproductive Health Care, 30(3), 155–163. (2026-34675-009).
Palomo, A. M., de Veciana, A. R., Areste, M. E., & Lasaosa, F. J. C. (2026). Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care: An Exploratory Study. Acta Paediatrica, International Journal of Paediatrics. (2046540043).
Park, M. J., Joung, W. J., Chung, N. R., & Chae, S.-M. (2026). Neonatal Intensive Care Unit Nurses’ End-of-Life Care Experience: Becoming a More Empathetic Professional Caregiver. Advances in Neonatal Care.
Postier, A. C., Foster, L. P., Remke, S., Simpson, J., Friedrichsdorf, S. J., & Brearley, S. G. (2024). Predictors of improvement in parental stress after the first three months at home with a medically fragile infant. Maternal and Child Health Journal, 28(2), 303–314. (2024-25155-001).
Ronne, T., Cahill, A., Horst, K., Struwe, L., & Gonzales, K. (2026). Implementing the PAR Scale in a Pediatric Concurrent Care Setting: A Quality Improvement Project. Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association. (651379988).
Self, J., & Spassiani, N. (2026). Pain assessment in children and young people with developmental disabilities: A scoping review. Nursing Children and Young People. (651434437).
Stritzke, A., Bhullar, H., Ruth, C. A., Lodha, A., Beltempo, M., Shah, P. S., Pillay, T., Wong, J., Stavel, M., Sherlock, R., Mehrem, A. A., Toye, J., Ting, J., Fajardo, C., Harabor, A., Strueby, L., Seshia, M., Louis, D., Ruth, C., … Piedboeuf, B. (2026). Trends and Causes of Neonatal Mortality in Canadian Neonatal Intensive Care Units. Journal of Pediatrics, 294, 115102. (2045281086).
Szabat, M., & Zurzycka, P. (2026). Parental hope in paediatric palliative care: A systematic review of the ethical issues in evidence-based literature. BMC Medical Ethics, 27(1).
Tatterton, M. J., Bethell, C., Moody, A., McShane, Z. P., Stocks, K. L., & Charles, A. E. (2026). The role, contribution and impact of independent nurse prescribers and advanced nurse practitioners to the children’s hospice workforce. Illness, Crisis, & Loss, 34(1), 56–70. (2026-85239-004).
Tatterton, M. J., & Pickering, A. (2026). Positive impact of training and support on improving the proficiency of nurses providing palliative care to babies, children and young people in hospital. Evidence-Based Nursing, 29(3), 143.
Tay, J., Widger, K., Stremler, R., & Pole, J. D. (2026). Coping as a mediator between family stressors and behavioural adjustment in siblings of children with progressive life-limiting conditions: A multilevel longitudinal study. BMC Pediatrics. (651453073).
Taylor, E., & Tatterton, M. J. (2026). Cultural sensitivity and emotional resilience education improve infant health and wellbeing in end-of-life care in neonatal intensive care units. Evidence-Based Nursing.
van Breemen, C., Liversidge, S., Zeng, C., Zheng, J., & Andrews, G. (2026). Help Is a Phone Call Away: A 24-Hour Nurse-Led Pediatric Hospice Clinical Care Line. Journal of Palliative Medicine, 10966218261460532.
Younge, T., Moore, H., Mahmood, L. A., Thompkins, J. D., Chandereng, T., & Lyon, M. E. (2026). Multimodal Pediatric Advance Care Planning Training for Neonatal Intensive Care Unit and Palliative Care Practitioners: Training, Self-Efficacy, and Practice. Journal of Continuing Education in the Health Professions.