Sarah Friebert – Akron Children’s Hospital, OH, USA
Founder and long-time director of the Haslinger Family Pediatric Palliative Care Division at Akron Children’s Hospital; currently Program Director for Pediatric Hospice and Palliative Medicine Director and Research Director
Featured Article
Sjuls, M., Fegran, L., Ludvigsen, M. S., & Robstad, N. (2025). Fathering a Child With a Progressive Life-Limiting Condition in the Context of Pediatric Palliative Care: A Qualitative Interview Study. Qualitative Health Research, 10497323251398383.
I selected Sjuls et al. (2025) because it addresses a critical gap in pediatric palliative care (PPC) research: the lived experiences of fathers. Historically, PPC literature has focused primarily on mothers or families of children with cancer, leaving fathers’ perspectives underrepresented (Fisher et al., 2021; Sjuls et al., 2023) – a significant oversight because fathers play an essential role in caregiving and decision-making, yet often report feeling sidelined in healthcare settings. Understanding their unique challenges is vital for delivering truly family-centered care.
The article tackles a pressing issue in PPC—the need for inclusive, gender-sensitive approaches to family support. International standards emphasize holistic care for both the child and family (Benini et al., 2022), but fathers frequently remain out of the loop when it comes to emotional and practical support. This study highlights the ways in which fathers navigate complex roles—caregiver, breadwinner, and parent—while coping with anticipatory grief and striving to maintain normalcy. These insights are timely and crucial as PPC increasingly moves toward equity and inclusivity in care delivery.
The study was conducted in Norway, which has a publicly funded healthcare system and structured respite care services. Though these contextual factors differ from those in the U.S., the principles identified—such as the importance of early PPC involvement, emotional support for fathers, and normalization of respite care—are universally relevant. Access to respite care varies across countries, and, in fact, the overwhelming need for caregiver relief and emotional well-being is emerging as a priority in U.S. practice.
The study employed a qualitative design grounded in phenomenological hermeneutics, using Ricoeur’s interpretation theory (Ricoeur, 1976). Thirteen fathers of children aged 1–18 years with progressive life-limiting conditions participated in semi-structured interviews. All children lived at home and received varying levels of PPC support. The analysis revealed four major themes:
- Balancing between grief and relief – Fathers experienced emotional ambivalence during the diagnostic phase, oscillating between sorrow and relief when a diagnosis provided clarity.
- Searching for stability in an unpredictable life – Fathers sought information, prepared for emergencies, and relied on PPC teams and peer networks to manage uncertainty.
- Feeling homebound yet making space for life – Fathers described the tension between being confined to home due to their child’s medical needs and striving to create meaningful experiences for their families.
- Juggling between being a dad, caregiver, and breadwinner – Fathers struggled to reconcile competing roles, often sacrificing personal well-being and feeling guilt over reliance on respite care.
The findings underscore that fathers’ emotional needs often go unrecognized. While they adopt a protective stance—appearing strong and concealing grief—they remain vulnerable to isolation and mental health challenges (Postavaru et al., 2020). Fathers valued PPC teams for guidance and expressed a strong desire for peer support, particularly father-specific groups. Importantly, the study calls for proactive engagement of fathers in care planning, early introduction of PPC services, and facilitation of respite care without stigma.
For PPC practice, these insights are transformative. They remind clinicians that fathers are not merely logistical supporters but individuals with distinct emotional landscapes and coping strategies. Incorporating fathers’ perspectives can improve family functioning, enhance decision-making, and ultimately benefit the child’s quality of life. Practical implications include offering flexible support models, creating father-inclusive peer networks, and normalizing conversations about emotional well-being and respite care.
This study resonates deeply with my experience in PPC. Societal norms have thankfully evolved over the course of my career; nevertheless, fathers may appear stoic during clinical encounters, which can lead professionals to underestimate their emotional burden. Sjuls et al.’s (2025) findings challenge this assumption, revealing that silence does not equate to resilience. All PPC teams have an opportunity to integrate these insights into practice by ensuring that fathers are explicitly invited into conversations about emotional support and coping strategies.
The “big picture” implication is clear: PPC must evolve beyond a maternal-centric model to embrace the diversity of parental experiences. Creating father-specific peer support opportunities—perhaps activity-based rather than purely discussion-based—could foster openness and reduce isolation (Vatne et al., 2022). Additionally, normalizing respite care as a proactive measure rather than a sign of failure is essential for sustaining family well-being (Murphy et al., 2021). In the U.S., availability of high-quality respite opportunities is variable at best, but the clear benefits of supporting caregiver well-being should motivate us as a field to advance respite as an urgent public health issue and mainstream its utilization.
Ultimately, this article reinforces that holistic care is not only about symptom management but also about enabling families to live meaningfully despite uncertainty. By acknowledging fathers’ unique struggles and strengths while moving beyond stereotypes and assumptions, we can move closer to the ideal of truly family-centered palliative care.
References
Vatne, T. M., Dahle, S. S., Haukeland, Y. B., & Fjermestad, K. W. (2022). A qualitative study of men’s experience of being a father in families with childhood disability. Journal of Developmental and Physical Disabilities, 35(1), 111–131.
Benini, F., Papadatou, D., Bernadà, M., Craig, F., De Zen, L., Downing, J., … Wolfe, J. (2022). International standards for pediatric palliative care: From IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management, 63(5), e529–e543.
Fisher, V., Fraser, L., & Taylor, J. (2021). Experiences of fathers of children with a life-limiting condition: A systematic review and qualitative synthesis. BMJ Supportive & Palliative Care, 13(1), 15–26.
Murphy, M., Hill, K., Begley, T., Brenner, M., & Doyle, C. (2021). Respite care for children with complex care needs: A literature review. Comprehensive Child and Adolescent Nursing, 45(2), 127–136.
Postavaru, G.-I., Swaby, H., & Swaby, R. (2020). A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness. Palliative Medicine, 35(2), 261–279.
Ricoeur, P. (1976). Interpretation theory: Discourse and the surplus of meaning. Texas Christian University Press.
Sjuls, M., Fegran, L., Ludvigsen, M. S., & Robstad, N. (2025). Fathering a child with a progressive life-limiting condition in the context of pediatric palliative care: A qualitative interview study. Qualitative Health Research, 0(0), 1–15. https://doi.org/10.1177/10497323251398383
Sjuls, M., Ludvigsen, M. S., Robstad, N., & Fegran, L. (2023). Fathers’ experiences of living with a child with a progressive life-limiting condition: A qualitative systematic review. Journal of Advanced Nursing, 80(5), 1670–1685.
TRENDS 2026; Issue #02
Click the links below to view this months full list in desired format.
Abudinen Vasquez, S., Singh, R., Boulais, J., & Krbec, B. (2025). Improving Communication Competencies in Neonatology: A Multimodal Simulation-Based Palliative Care Workshop. The American Journal of Hospice & Palliative Care, 10499091251386410.
Chapman, E., Mitchell, S., Fraser, L. K., Wozencroft, J., Morris, B., Peat, G., Charles, T., Elverson, J., Carder, P., Tallowin, K., Magnusson, J., & Ziegler, L. (2025). Experience-based co-design informed development of a toolbox to help optimise primary care support during transition from children’s hospice care: HOPSCOTCH study protocol. BMJ Open, 15(11), e108660.
Cuartero-CastaÑEr, M., Ribot, M., Morcillo, V., & Gelabert, S. (2025). Cultural and Spiritual Approaches to Infant Death in Palliative Care: A Systematic Review. Revista de Cercetare Si Interventie Sociala, 91–106.
Duchin, O., Mayan, I., Biran, O., Geva Robinson, S., & Sabar, R. (2025). Pediatric Home Hospice as a National Service in Israel. Journal of Palliative Medicine.
Fasolino, T., Parry, B., Skrocki, A., Withycombe, J., Garst, B. A., Gillard, A., Gagnon, R. J., & Hollandsworth, R. (2025). A Rapid Review Exploring Overnight Camps for Children with Chronic or Serious Illness as a Palliative Care Intervention for Caregivers. Journal of Palliative Medicine, 28(S1), S17EP – S26.
Goossens, L., Beernaert, K., Cools, F., Roets, E., Chambaere, K., & Dombrecht, L. (2025). Experiences and challenges in perinatal palliative care: A qualitative study among parents and healthcare providers in regional and tertiary hospitals. BMC Palliative Care.
Hessey, E., Thavam, T., Mahant, S., Cohen, E., Zhu, J., Buchanan, F., To, T., & Gill, P. J. (2025). Most costly and prevalent reasons for hospitalization in children with medical complexity in Ontario, Canada. J Hosp Med.
Hommes, H., Forsyth, D., & Rowe Neal, A. (2026). Quality Measure Considerations for Pediatric Palliative and End-of-Life Care. The American Journal of Hospice & Palliative Care, 43(2), 206EP – 212.
Hurley, F., Balanuta, S., & Flanagan, P. (2025). Coping strategies of nurses caring for children with life-limiting and life-threatening conditions: An integrative review. Journal of Pediatric Nursing, 86, 549EP – 558.
Johnson, M. L., Friedrich, A., & DiDomizio, P. G. (2025). Provider Perspectives on Palliative and Complex Care Team Collaboration. Journal of Pain and Symptom Management.
Kafantaridou, G., Margari, N., Konstantinidis, T., Govina, O., Vlachou, E., Dokoutsidou, E., Zartaloudi, A., & Adamakidou, T. (2026). What Is the Knowledge of Pediatric Nursing Staff About Palliative Care? A Cross-Sectional Greek Study. Adv Exp Med Biol, 1490, 191–199.
Kent, L., Williams, M., Pinner, L., Callard, E., Fisher, J., & Pyke-Grimm, K. A. (2025). Early Integration of Palliative Care Services in Pediatric Stem Cell Transplant Patients. Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association.
Kim, K., Kim, E., Seo, H., Gong, M. S., Lee, H., Kwon, S. Y., & Choi, E. K. (2026). Caregiver priorities and healthcare outcomes in a pediatric home care service for children with medical complexity: A quasi-experimental study. European Journal of Pediatrics, 185(1), 48.
Koehler, H., & Jones, J. (2025). Effectiveness of a Diagnosis Trigger List on Increasing the Integration of Palliative Care in the Neonatal Intensive Care Unit. Advances in Neonatal Care : Official Journal of the National Association of Neonatal Nurses.
Lee, Y., Lee, K. H., Gu, B., Kim, D., & Lee, I. K. (2025). Impact of Intensivist Authority on End-of-Life Practices in a Korean PICU. Clinical Pediatrics, 00099228251401316.
Leshen, M. L., & Hawkins, C. M. (2025). The Role of IR in Pediatric Pain and Palliation. Seminars in Interventional Radiology, 42(3), 336EP – 342.
Lindsay, J., Hudgins, A., & Patel, S. (2024). Pediatric Resuscitation, Parental Presence, and Provider Perspective. Dimensions of Critical Care Nursing : DCCN, 43(6), 328EP – 332.
Lindsey, J. (2025). Mediating religious disputes about children’s medical treatment: A qualitative study. BMJ Paediatrics Open, 9(1), e003789.
Liu, A. J. (2025). A Difficult and Loving Decision: Disparities in Pediatric End-of-Life Care. Academic Medicine : Journal of the Association of American Medical Colleges, 100(12), 1386EP – 1387.
Marinetto, A., De Tommasi, V., Rosa, M., Santini, A., Carraro, C., Rosato, I., Lazzarin, P., Benini, F., & Zanin, A. (2025). Virtual reality as a tool to promote healthcare providers wellbeing in pediatric palliative care. BMC Health Services Research, 25(1), 1295.
Martins, N., Dinis, A., & Nogueira, A. (2025). The Impacts of Legacy-Making Interventions in the Pediatric Palliative Care Setting. Journal of Palliative Medicine.
McGuire, A., & Rusch, R. (2025). The Implementation of Memory-Making Kits for Families Enrolling in Home Hospice; A Pilot Program Aimed to Address Parental Grief. Journal of Palliative Medicine.
Miller, S. M., Graetz, E., D’Aquila, M. L., Sharan, M., Schneider, E., Gibbs, K. E., & Savetamal, A. (2025). Palliative care in patients admitted with primary burn injury. Journal of Burn Care & Research : Official Publication of the American Burn Association.
Postier, A. C., Root, M. C., O’Riordan, D. L., Pantilat, S. Z., Friedrichsdorf, S. J., & Bogetz, J. F. (2026). Inpatient Symptom Prevalence, Severity, and Improvement in Children Referred for Pediatric Palliative Care Consultation: Findings from a Multisite Quality Improvement Registry. The Journal of Pediatrics, 288, 114828.
Santini, A., Rosa, M., Marinetto, A., Grigolon, E., Giacomelli, L., Vecchi, L., Agosto, C., Tommasi, V., & Benini, F. (2025). I have the right to carry a backpack: Access to the school of children and adolescents in paediatric palliative care in the Veneto Region (Italy). Italian Journal of Pediatrics.
Santos Ferreira, M., Pereira, D. G., & Caldeira, S. (2025). Spirituality in children with life-limiting, life-threatening and/or complex chronic conditions: A scoping review. Journal of Pediatric Nursing, 86, 526EP – 534.
Sari, K., Tarja, P., Minna, H., & Outi, K. (2025). Parents’ Experiences of Family-Centred Care in Home-Based Paediatric Care of Their Child With Life-Limiting Illness: A Qualitative Descriptive Study. Journal of Advanced Nursing, 81(12), 8780EP – 8793.
Schmidt, P., Wager, J., Warrender, G., Garske, D., Beissenhirtz, A., Zernikow, B., & Kubek, L. (2025). Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care. Children, 12(12), 1606.
Shah, S. S., Laksana, E., Aczon, M. D., Avesar, M., Burkiewicz, K., Chandnani, H. K., Fainberg, N. A., Hsu, S. C., McCrory, M. C., Hodge, K. R., Pringle, C. P., Ross, P. A., Shah, J. K., Siegel, L. B., Tripathi, S., Morrison, W. E., Wetzel, R. C., & Winter, M. C. (2025). Withdrawal of Life-Sustaining Treatment in Children Managed in Nine PICUs in the United States: A Secondary Analysis of the Death One Hour After Terminal Extubation (DONATE) Dataset, 2009-2021. Pediatric Critical Care Medicine : A Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.
Sjuls, M., Fegran, L., Ludvigsen, M. S., & Robstad, N. (2025). Fathering a Child With a Progressive Life-Limiting Condition in the Context of Pediatric Palliative Care: A Qualitative Interview Study. Qualitative Health Research, 10497323251398383.
Steindal, S. A., Winger, A., Riiser, K., Bjornerud, E., Chen, W., & Holmen, H. (2025). Health Technologies and Infrastructures for Supporting Home-Based Pediatric Palliative Care: Scoping Review. Journal of Medical Internet Research, 27, e70687.
Tay, J., Rapoport, A., Crawley, J., Ta, J., & Kichler, J. C. (2025). “Rolling the Boulder Up the Hill”: A Qualitative Study of Parents’ Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs. Can J Nurs Res, 8445621251380909.
Tay, J., Rapoport, A., Ta, J., Crawley, J., & Kichler, J. C. (2025). Realities of Home Care System for Children with Medical Complexity (CMC): A Qualitative Study of Parent Perspectives Experiences, Barriers, and Alternative Models. Home Health Care Management & Practice, 10848223251408754.
Trae, G., Winger, A., & Nordstrom, M. (2025a). Clinical Dietitians’ Perspectives on Nutritional Management in Children’s Palliative Care: A Qualitative Study. Journal of Human Nutrition and Dietetics : The Official Journal of the British Dietetic Association, 38(6), e70174.
Trae, G., Winger, A., & Nordstrom, M. (2025b). Coordinating children’s palliative care in municipalities: A qualitative study. BMC Palliative Care.
Treat, L. (2025). Neuropalliative Medicine in Pediatric Neurology. Continuum (Minneapolis, Minn.), 31(6), 1675–1691.
Urbanska, K. A., Jarosz-Lesz, A., Wasek-Buko, M., Naworska, B. M., Staniczek, J., & Drosdzol-Cop, A. B. (2025). From compassion to action: Perinatal palliative care at the Bonifratres Medical Centre (2014-2023)—Part one. Ginekologia Polska, 96(11), 958–962.
Weaver, M. S., Chana, T., Fisher, D., Hawley, B., Lindley, L. C., Smith, S. M., Ware, A., & Torkildson, C. (2026). Community-Based Provider Concerns About Pediatric Hospice and Palliative Care. Journal of Pain and Symptom Management, 71(1), 51–59.
Zaminer, M., Schreiner, E., Bierbaumer, S. T., Blatterer, J., Hammer, S., Kaufmann, L., Kuhberger, S., Tichy, H., Wagner-Skacel, J., Holter, M., Eber, E., Wagner, K., & Verheyen, S. (2025). Project Baby Panther -assessment of the implementation of the rapid Whole Genome Sequencing as routine diagnostic toll for critically ill neonates and children in Austria. European Journal of Human Genetics, 33, 418.
Zuo, Y., Wang, Y., Wang, Z., Fu, Z., Fang, Y., & Jiang, J. (2025). Exploring the experiences of neonatal parents for neonatal palliative care: A meta-synthesis of qualitative research. BMC Palliative Care.Journal of Pain.