James A. Feinstein – University of Colorado School of Medicine and Children’s Hospital Colorado, USA
Dr. James Feinstein is a Professor of Pediatrics at the University of Colorado School of Medicine and Medical Director of the Colorado Child Health Research Institute. Dr. Feinstein is widely recognized for his research program in pediatric polypharmacy and medication safety, leading federally funded studies focused on making medication use safer and more manageable for children with medical complexity.
Featured Article
Pigani, F., Burlo, F., Peri, F., Bolognani, M., Uez, F., Barbi, E., & De Zen, L. (2026). The impact of sleep disorders of children with severe medical complexity on their caregivers’ sleep: A perspective from two pediatric palliative care centers. Italian Journal of Pediatrics.
Sleep disruption is prevalent among children with medical complexity (CMC) but is often addressed with a primary focus on the child.1 In practice, it is a family-level experience—one that shapes the capacity of caregivers who provide around-the-clock care and monitoring in the home. Despite this, data directly linking child sleep patterns to caregiver sleep outcomes remain limited. Pigani et al. help address this gap by examining these dyadic relationships in a pediatric palliative care population.2
In this descriptive study conducted at two palliative care programs in Italy, 15 CMC (median age: 10 years old) and their caregivers (N=26) were evaluated using a structured sleep questionnaire and a seven-day sleep diary. Most children (73%) had significant functional impairments, 73% required gastrostomy feeding, and 13% had a tracheostomy. Nearly half of children (47%) received regular sleep medications, while an additional 13% used sleep medications as needed, most commonly melatonin.
Children had a reported median nighttime sleep duration of 8 hours. Nearly 87% of children experienced nighttime awakenings, with a median of 2 awakenings per night. These interruptions were often related to care needs—such as suctioning, pain management, or nocturnal feeding—though in 22% of cases, no clear cause was identified.
Caregivers reported a median of 6 hours of sleep per night and estimated that they lost approximately 2 hours of sleep compared to what they felt they needed. On a 5-point scale, the impact of nighttime caregiving on sleep was rated as high (median 4).
The total amount of sleep children experienced was not associated with caregiver sleep loss (correlation = -0.28, p = 0.404). In contrast, the number of nighttime awakenings was significantly associated with caregiver sleep loss (correlation = 0.72, p = 0.012). The overall level of medical complexity was not associated with these sleep patterns.
These exploratory data suggest that sleep disruption in families of children with CMC may be driven less by sleep quantity and more by the repeated demands of nighttime care. Even when a child appears to be getting enough total sleep, the night can still be defined by repeated awakenings and the need to monitor and respond quickly to changes in a child’s condition. For many families—and for those of us who care for them—these findings will feel familiar.
I practice as a complex care pediatrician at the Children’s Hospital Colorado Special Care Clinic, where we provide primary care for more than 6,000 CMC, and sleep is one of the most important and frequent issues I discuss with families. Sleep hygiene is always part of the conversation, but it is often not sufficient. Pharmacotherapy is commonly needed, and in this study more than half of children were using sleep medications.3 What this study helps clarify is why that approach alone is often not enough. While medications may improve sleep onset or duration, they rarely reduce the need for nighttime caregiving. In practice, that often means thinking beyond medications—to questions of who is awake overnight, what monitoring is truly necessary, and where additional supports might make a meaningful difference.
These findings also bring into focus an area of growing tension in clinical care: access to home nursing and overnight support. Increasingly, families are asked to meet very high thresholds by private and public insurance programs in the United States—often approaching ICU-level needs—to qualify for nursing services.4 Yet for many children with CMC, even without ventilator dependence or active titration of therapies, unpredictable nighttime interruptions are associated with measurable caregiver sleep loss. This is the scenario that often requires medical justification to explain why a child who appears “stable” still requires overnight support. Data like these help make that burden visible. In this context, limiting access to overnight support—and contributing to chronic sleep disruption—undermines caregiver well-being, a central component of what makes care at home sustainable and safe.
As clinicians advocate for home-based supports, there is a need for stronger evidence to guide these decisions. Larger studies that incorporate objective sleep measures, alongside caregiver perspectives, would help quantify the true magnitude of nighttime disruptions and better identify where targeted supports could have the greatest impact.
References
- Feinstein, J. A., et al. (2020). “Identifying Important Clinical Symptoms in Children With Severe Neurological Impairment Using Parent-Reported Outcomes of Symptoms.” JAMA Pediatr 174(11): 1114–1117.
- Pigani, F., Burlo, F., Peri, F., Bolognani, M., Uez, F., Barbi, E., & De Zen, L. (2026). The impact of sleep disorders of children with severe medical complexity on their caregivers’ sleep: A perspective from two pediatric palliative care centers. Italian Journal of Pediatrics.
- Blackmer, A. B. and J. A. Feinstein (2016). “Management of Sleep Disorders in Children With Neurodevelopmental Disorders: A Review.” Pharmacotherapy 36(1): 84–98.
- Foster CC, Turchi RM; Section on Home Care; Committee on Child Health Financing. Financing of Pediatric Home Health Care: Policy Statement. Pediatrics. 2025 Dec 1;156(6):e2025073624. doi: 10.1542/peds.2025-073624. PMID: 41242516.
TRENDS 2026; Issue #05
Click the links below to view this months full list in desired format.
Aglio, T., Bobelis, A., Autrey, A., Hills, T., Superdock, A., Madni, A., Bien, K., Mali, N., & Kaye, E. C. (2026). Regional Pediatric Education and Assistance Collaborative for Hospice Nurses (REACH): A Tele-Educational Intervention. Journal of Hospice & Palliative Nursing.
Alvarez-Perez, Y., Duarte-Diaz, A., Rivero-Santana, A., Abrante-Luis, A., Carreras, B., Infante-Ventura, D., Ramos-Garcia, V., Torres-Castano, A., Herrera-Ramos, E., Marrero Gomez, J. L., & Perestelo-Perez, L. (2026). Effectiveness of psychological interventions for parents of children eligible for paediatric palliative care: A systematic review and meta-analysis. Frontiers in Psychology, 17, 1775937.
Bogetz, J. F., Snaman, J. M., Lord, B., Kirch, R., & Rosenberg, A. R. (2026). Proceeding from a national workshop and future directions for pediatric palliative care research. Journal of Pain and Symptom Management. (650587449).
Carone, N., Tracchegiani, J., & Cruciani, G. (2026). Loss at a distance, fatherhood rewritten: Perinatal bereavement and subsequent cross-border surrogacy arrangements in gay couples and single fathers. LGBTQ+ Family: An Interdisciplinary Journal. (2027-25787-001).
Casey, S., & Schneider, A. (2026). Factors involved in posttraumatic growth in mothers experiencing fetal and infant death. Omega: Journal of Death and Dying, 92(4), 2300–2319. (2027-29354-032).
Claridge, A. M., Tenhulzen, K. A., Mattson, G. A., Stevens, M., McCarthy, A., & McClendon, L. F. (2026). Formal and informal support strategies among bereaved parents and children: Met and unmet needs of families following the death of a child. Death Studies. (2027-28026-001).
Cockerell, K. L., Geist, R. A., & Gary, A. (2026). Through the nurse’s lens: Bereavement photography and creative interventions in nursing care. Nursing, 56(4), 41–45.
Copeland, T., Treat, L., Duvuru, R., Schraeder, R., Wagner, E., & Veerapandiyan, A. (2026). Healthcare Providers’ Practices and Perspectives on Discussing Life Expectancy with Patients with Duchenne Muscular Dystrophy and their Caregivers. Pediatric Neurology.
Derrington, S., Broden Arciprete, E. G., Lin, M. C., Oczkowski, S. J. W., Alladin, A., Anani, U. E., Borchik, A. K., Collins, C. A., Delgado-Corcoran, C., Dickerman, M. J., Harrod, C. G., Henner, N., Kon, A. A., Lewis-Newby, M., Lord, B. T., Masters, A.-A., McCarthy, S., Moynihan, K. M., Munoz-Blanco, S. M., … DeCourcey, D. D. (2026a). Executive Summary of Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life. Pediatric Critical Care Medicine.
Derrington, S., Broden Arciprete, E. G., Lin, M. C., Oczkowski, S. J. W., Alladin, A., Anani, U. E., Borchik, A. K., Collins, C. A., Delgado-Corcoran, C., Dickerman, M. J., Harrod, C. G., Henner, N., Kon, A. A., Lewis-Newby, M., Lord, B. T., Masters, A.-A., McCarthy, S., Moynihan, K. M., Munoz-Blanco, S. M., … DeCourcey, D. D. (2026b). Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life. Pediatric Critical Care Medicine.
Engel, M., Grant, M. P., Kleiboer, A., de Graaf, E., Teunissen, S. C. C. M., & Kars, M. C. (2026). Palliative care provision for children in general practice: A retrospective cohort study. Palliative & Supportive Care, 24, e88.
Hawley, C. N., Alcantra, N., Chen, C., Feng, Y., Lattimore, K., Oh, S., Rajeeva, B., Robinson, F. I., Shenbanjo, M., Oslin, E., & Bogetz, J. (2026). Leveraging User Experience Design Expertise in Palliative Care Intervention Science. Journal of Palliative Medicine, 10966218261434133.
Ivéus, K., Holm, M., Årestedt, K., Kreicbergs, U., Anmyr, L., Udo, C., & Lövgren, M. (2026). The Family Talk Intervention Improves Family Communication and Psychosocial Health Among Families in Pediatric Palliative Care: A Pre-Post Evaluation Study. Children, 13(4), 471.
Jeno, M., Koop, J., Gabriel, M., Caraway, A., Novotny, E., Patrick, K., Gonzalez-Giraldo, E., Auguste, K., Ostendorf, A., McNally, K., Alexander, A., Berrios-Servios, G., Eschbach, K., Bolton, J., Ailion, A., Singh, R., Wong-Kisiel, L., Zaccariello, M., Tatachar, P., … Ciliberto, M. (2026). Neuropsychological assessments in a large cohort of pediatric palliative epilepsy surgery patients. Epilepsy and Behavior, 178, 110943. (2043857278).
Jonas, M. A., Napierala, H., Kanzelmeyer, N., Taylan, C., Kubiak, N., & Thumfart, J. (2026). Pediatric advanced chronic kidney disease as a family challenge: Coping and communication in daily life. European Journal of Pediatrics, 185(4).
Kaempf, J. W. (2026). Extremely premature infant care: Reasonable progress or therapeutic fury? Seminars In Fetal & Neonatal Medicine, 101714.
Kim, D. T., & Yu, X. (2026). A Life Worth Sustaining? Bestowed Worth and Pediatric Care. The Hastings Center Report, 56(2), 30EP – 42. (650640636).
Kim, M., Kim, K., Kim, W., Nam, E. J., Kye, S. Y., & Choi, J. Y. (2026). Trends in mortality of the WHO-recommended diseases for palliative care in the Republic of Korea, 2014-2023. Frontiers in Public Health, 14, 1752495. (650424299).
Lantos, J. D. (2026). When facts are not fixed: Rethinking shared decision making at the margins of neonatal viability. BMC Medical Ethics. (650619307).
Latzer, I. T., Friedman, D., Williams, D. N., Lapham, G., Kukla, A., Karnieli-Miller, O., & Pearl, P. L. (2026). SUDEP awareness and effect on parental trauma, grief, and coping after the death of a child: A qualitative investigation. Neurology, 106(5). (2027-26156-001).
Levine, D. R., Laventhal, N. T., & Macauley, R. (2026). Responding to Parental Requests for Potentially Nonbeneficial Treatment in Life-Threatening Situations: Technical Report. Pediatrics.
McCarthy, S. B., Snaman, J. M., Umaretiya, P. J., & Johnston, E. E. (2025). Partnering with caregivers in bereavement research: Why it matters and best practices. Pediatrics, 156(6). (2027-02481-001).
Mihalik, A., Gamble, S., Brown, A., Koch, J., Shaw, T., & Cuviello, A. (2026). Pediatric Palliative Sedation Practices in the Intensive Care Unit. Journal of Palliative Medicine, 29(2), 173–179.
Noyes, J. (2026). Humanising Child Death: The Creation and Subsequent Development of Children’s Palliative Care as a Distinct Clinical, Educational and Research Speciality. Journal of Advanced Nursing. (650518656).
Parker, K. E., Gerken, K., Huckaby, A. P., Gutek, A., Freytag, A., Buderer, N., Rice, M. R., Craig, M. E., Cacciotti, M., & Stausmire, J. M. (2026). Collaboration of an Obstetrical Residency Program With a Community Hospice/Bereavement Agency to Implement an Obstetrician Specific Educational Curriculum to Improve Care to Bereaved Families and Support Staff During Difficult Delivery Situations. American Journal of Hospice & Palliative Medicine, 43(4), 376–386. (191763938).
Peñafiel, J. F.-C., Mingorence, A. N., Mrtín, V. P., & Martino Alba, R. (2026). Ultrasound-Derived Muscle Biomarkers as a Gateway toward Quantitative Pediatric Frailty in Palliative Care. Journal of Palliative Medicine, 10966218261420048.
Perugu, S., & Rehan, V. K. (2026). Tele-advocacy and Bioethics During the Pandemic: A Telehealth Approach in Perinatal-neonatal Care for Mitigating Ethical and Moral Tensions at a Safety-net Hospital. Journal of Neonatology, 40(2), 208–216. (191456080).
Pigani, F., Burlo, F., Peri, F., Bolognani, M., Uez, F., Barbi, E., & De Zen, L. (2026). The impact of sleep disorders of children with severe medical complexity on their caregivers’ sleep: A perspective from two pediatric palliative care centers. Italian Journal of Pediatrics.
Ramón-Gómez, J. L., de Felipe, M., Balsells, S., Segura, G. M., García, C. R., & Ortigoza-Escobar, J. D. (2026). Management of movement disorders in chronic neurological conditions and palliative care: A retrospective cohort study. Pediatric Neurology.
Sawalha, M. A. (2025). Pediatric nurses’ perceptions of obstacles and supportive behavior’s in end-of-life care: A systematic literature review. Cardiology in the Young, 35(Supplement 2), S220EP – S221. (650582367).
Snaman, J. M., Requena, M. L., Avery, M. E., Herold, B. T., Balossi, M., DeCourcey, D. D., Hauer, J., Dussel, V., & Wolfe, J. (2026). Palliative Care in Children with Severe Neurological Impairment: The PediQUEST Refine Case Series. Journal of Pain and Symptom Management. (650616394).
Solstad, K., Shu, D., McManimon, K., Remke, S., O’Conner-Von, S., Woll, A., Miller, J. M., Shapiro, M. C., & Scheurer, J. M. (2026). Engaging Bereaved Parent Educators in Pediatric End-of-Life Workshops: A Trauma-Informed Onboarding. Journal of Pain and Symptom Management. (650600654).
Sullivan, L. E., Alter, N. E., Hiller, A. R., Braun, S. A., Galdyn, I. A., Golinko, M. S., & Pontell, M. E. (2026). Surgeon Perspectives on Cleft Lip and Palate Repair in Patients With Life-Limiting and Terminal Illnesses: An ACPA Member Survey. Cleft Palate-Craniofacial Journal, 63(3), 454–462.
Tassell-Matamua, N., Kothe, K., Nahm, M., Woollacott, M., Roe, C., Greyson, B., Mutis, M., & Evrard, R. (2026). Terminal lucidity in children: A contemporary case collection. Psychology of Consciousness: Theory, Research, and Practice. (2027-34220-001).
Tempesta, C., Abramson, E., & Salant, J. A. (2026). Assessing caregiver needs of critically-ill children with non-cancer diagnoses: A qualitative study. Journal of Pain and Symptom Management. (650620654).
Urbanska, K., Naworska, B., Bednarz, K., Stojko, R., & Drosdzol-Cop, A. (2026). Experience with difficult situations in perinatology: Impact of empathy and death-related behaviors on stress in nurses and midwives. Ginekologia Polska, 97(2), 126–139.
Vermeulen, J., Fobelets, M., Van Heymbeeck, I., & Demedts, D. (2026). The experiences of nursing and midwifery students with end-of-life care in Neonatal Intensive Care Units: A qualitative descriptive exploratory study. Nurse Education Today, 163, 107083.
Weaver, M. S., Zhou, Y., Williams, A., Chana, T., & Lindley, L. C. (2026). The proliferation of perinatal hospices in states with reproductive restrictions or abortion bans. Journal of Perinatology.