Literature Review

Experiences of family caregivers of children aged 1–23 months who have received pediatric palliative care: A systematic review with qualitative metasynthesis Sigma Global Nursing Excellence - Journal of Nursing Scholarship; by Juan Manuel Vázquez Sánchez, Manuela Rodríguez Sánchez, Emilio Mota Romero, Ana Alejandra Esteban Burgos, Rafael Montoya Juárez, César Hueso Montoro, Daniel Puente Fernández; 4/1/25 This study underscores the importance of addressing the unique needs of family caregivers of children aged 1–23 months receiving pediatric palliative care (PPC), highlighting their struggles with social isolation, neglected self-care, and disrupted family life. Healthcare providers should prioritize age-specific approaches to PPC, focusing on improving communication, care coordination, and understanding of palliative care principles to better support these caregivers. [Continue reading ...] 

[UK] Play 'humanizes' pediatric care and should be key feature of a child-friendly NHS, report suggests Medical Xpress; by University of Cambridge; 3/30/25 The report, by University of Cambridge academics for the charity "Starlight," calls for play, games and playful approaches to be integrated into a "holistic" model of children's health care—one that acknowledges the emotional and psychological dimensions of good health, alongside its physical aspects.  ... Both internationally and in the UK, health systems have, in recent decades, increasingly promoted play in pediatric health care. There is a growing understanding that making health care more child-friendly can reduce stress and positively improve younger patients' experiences. Despite this recognition, play often remains undervalued and inconsistently integrated across health care contexts. For the first time, the report compiles evidence from over 120 studies to make the case for its more systematic incorporation. [Continue reading ...] Editor's note: Click here to access the report, Playing with children's health? 

Honoring a young girl’s love of nature on her final dayMayo Clinic News Network; by Mayo Clinic Staff; 3/27/25 On a Saturday evening in September of 2024, Mae Helgeson arrived at Mayo Clinic in Rochester, her small body reeling from the trauma of a life-threatening accident. Although she was intubated and sedated, it didn't take long for the care team to learn what made this little girl special. ... "I often ask parents to tell me about their child. Is there anything you think is important or that I should know about your family?" says Paige Dighton, one of the Child Life specialists who partnered with Mae's family. "This allows them to share the special things — those unique qualities that make them a family. You learn more than just what's in their chart." ... It was only a couple of days later that Mae's family was faced with the devastating decision they'd hoped to avoid. ... The question shifted from "Can we save her?" to "How do we say goodbye?" Following their lead, the team began focusing on end-of-life care. "Dr. Schiltz gave us the space to think and process our emotions — it didn't feel rushed," says Matt. 

Ohio reported its first measles case in 2025. Here’s what you need to know about this highly contagious virus. Signal Cleveland, Cleveland, OH; by Sue Zake and Reegan Davis Saunders; 3/25/25 An unvaccinated adult in Ashtabula contracted the first case of measles in Ohio, according to the Ohio Department of Health. The individual had contact with someone who recently traveled internationally and was confirmed to have contracted the highly contagious respiratory virus. ... As of March 20, the CDC has reported 378 confirmed cases in the U.S.  — 95% of those who became ill were either unvaccinated or had an unknown vaccination status. Twenty-seven percent of children under 5 years of age who contracted measles have been hospitalized since Jan. 1. Here’s more information to help you understand the disease and protect yourself and your family [and prfoessionals]. [Continue reading ...]

The preference for acute rehospitalization scale: Evaluating preference for acute rehospitalization in pediatric hospice patientsJournal of Palliative Medicine; Kelley Newcomer, Katherine Maddox; 3/25Since the passage of the Affordable Care Act, children are able to access pediatric hospice while still pursuing life-prolonging care. This can create confusion between hospice and palliative care staff and families about current goals of care (GOC), which evolve over time. Hospice and palliative care teams created, implemented, and evaluated a five-point scale to summarize the Preference for Acute Rehospitalization (PAR) Scale for children on concurrent care hospice. Most users reported they agreed or strongly agreed the PAR Scale helped them to understand families' GOC and feel more confident giving advice with urgent questions.

[Ukraine] 'Support to the end’: Religious sister brings palliative care to unborn babies in Ukraine The Catholic World; by Hannah Brockhaus; 3/10/25 Since 2020, a pandemic and then an active war have caused untold tragedy for Ukrainians, but these circumstances have also allowed the country to confront death and grief in a way it never did before, according to a religious sister who offers palliative care to unborn children and their families. In Ukraine, “one couldn’t and wouldn’t talk about death before the COVID pandemic,” Sister Giustina Olha Holubets, SSMI, told CNA earlier this month. The more open a society is about death and loss and grief, she said, the easier it is to know how to respond to a family going through the pain of losing a child in the womb or shortly after birth. A Byzantine Catholic and member of the Sister Servants of Mary Immaculate, Holubets has degrees in bioethics, psychology, biology, and genetics. In 2017, she founded the nonprofit organization “Perinatal Hospice – Imprint of Life” in Lyiv, Ukraine, which she currently leads. ...

Rare flu complication rose in recent years Medscape; by Heidi Splete; 3/4/25 Reports of children in the United States with influenza-associated encephalopathy or encephalitis (IAE) increased from none during the 2020-2021 flu season to a preliminary 14% for the 2024-2025 season, based on a new analysis from the Centers for Disease Control and Prevention (CDC). IAE involves a range of neurologic syndromes triggered by flu infection of the respiratory tract, with diagnosis based on brain lesions detectable on imaging, wrote Amara Fazal, MD, and colleagues at the CDC’s National Center for Immunization and Respiratory Diseases. A series of anecdotal reports of pediatric cases with IAE in January 2025 prompted the CDC’s investigation; the findings were published in the Morbidity and Mortality Weekly Report (MMWR).

19-year-old says home hospice is a gift, not doom and gloom Keloland Media Group, Sioux Fall, SD; by Tom Hanson; 2/27/25 ... Cheyenne may be 19, but she is wise beyond her years, especially when it comes to something doctors discovered when she was 11. “I have stage 4 Metastatic Osteosarcoma, which is bone cancer in my lungs and It hasn’t responded very well to treatment, so that’s so I’m on hospice, but not because, I’m not on hospice because its the end right now, I’m on hospice because just so I have that extra support,” she said. Cheyenne knows people often misunderstand what hospice is all about. “It’s like doom and gloom and it’s like the end, there’s nothing they can do and that’s just not the case, she said. She was able to go on her road trip because Sanford’s Home Hospice team, including Becky Jibben, helped plan the trip and organize support teams along the way if Cheyenne needed help.

Development of an interprofessional clinician training in pediatric serious illness communicationJournal of Palliative Medicine; Danielle D DeCourcey, Rachelle Bernacki, John Carozza, Sithya Lach, Andrea Wershof Schwartz; 2/25Early advance care planning (ACP) is associated with improved outcomes in pediatrics, yet few rigorously developed curricula exist to train interprofessional clinicians in ACP communication. We developed an interactive, skills-based three-hour synchronous online clinician training program using Kern's Six-Step Curriculum Design, incorporating didactic and simulated patient encounters with a trained actor. Following training, 97% of participants were highly satisfied with training quality, and 100% endorsed that they would recommend it to colleagues. Additionally, clinician self-reported comfort discussing fundamental elements of ACP significantly increased following the training.

Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing studentsState Nurses Associations - Kansas State Nurses Association; by Shelby True, MSN, RN; Libby Rosen, PhD, RN, IBCLC; Ashley Seematter MSN, RN; Jeri Harvey & Karly Lauer, MSN, RN; 2/20/25Many baccalaureate nursing programs throughout the United States thread concepts of bereavement and end-of-life care throughout their curriculum. However, a standardized education program for nursing students that increases the knowledge, confidence level, and application of skills a nurse must possess when providing perinatal bereavement care is often absent from the curriculum (Sorce & Chamberlain, 2019).  Perinatal loss can have a profound impact on parents and their loved ones, leading to emotional, psychological, physical, and spiritual trauma that deeply affects the lives of those involved. The nursing care each parent receives at the time of the loss may be remembered for years to come and is crucial to determining the nature of the grieving process (Sorce & Chamberlain, 2019). ... To improve the knowledge, confidence, and skill level of nurses providing perinatal bereavement care, a role-play perinatal bereavement simulation was developed and implemented in two Midwestern universities’ baccalaureate nursing programs in the maternal/newborn courses. Editor's note: Having served our hospice's Pediatrics Team for four years, the grief of parents, grandparents, siblings affected me deeply. I remember vividly a young mom unable to physically leave her baby's body with the hospital's nurse. Gently, we held her baby together. Over the course of about 15 minutes, the mother gradually shifted the weight of holding her baby over to me, before the hardest task of her life--leaving the hospital without her child. (It was Christmas week. I bawled when I got home.) Visiting them at the funeral home and after in their home, I experienced horrible, disenfranchised comments and attitudes from others (especially a local preacher). Leaders: tune into your pediatric hospice and palliative team members. What specialized support and education do they need? And, we never know what personal stories of perinatal bereavement those around us continue to carry. 

Long-term health care use among children surviving multiple organ dysfunctionJAMA Network Open; Robert Ohman, MD, MPH; Jerry J. Zimmerman, MD, PhD; 1/25Mortality outcomes of pediatric critical illness have improved over the last several decades, while concurrently the population of patients with technology dependency and complex chronic morbidities has continued to grow and the incidence of MOD [multiple organ dysfunction] has simultaneously increased. In the setting of declining critical illness mortality, pediatric outcomes research has broadened its scope to assess metrics beyond mortality, describing the trajectory of recovery from critical illness with measures of patient quality of life; physical, cognitive, and functional status; and family psychological and economic well-being. As the authors point out, assessment of the larger financial impact of this higher health care utilization on families themselves would be valuable future knowledge, as high health care utilization, appointments, and recurrent hospitalizations may detract from families’ ability to work, care for their other children, and attend to their own medical needs. Targeted support for families of survivors of MOD may be necessary to minimize these secondary impacts and to optimize outcomes for this vulnerable population of patients.

Flat MaineCare rates force home health company to discharge pediatric patients NBC News Center Maine, Lewiston, ME; by Vivien Leigh; 2/7/25 A home health company is lobbying state health officials to adopt a funding plan to ensure kids with severe health needs don't fall through the cracks. Andwell Health Partners provides nursing, therapy, and services to nearly 900 children across six counties. The majority of those kids are on MaineCare, the state's version of Medicaid. But the company said it has no choice but to discharge patients because of a lack of increase in reimbursement rates. ... Lindsay Hammes, spokesperson with Maine DHHS, released a statement to News Center Maine. "... MaineCare has been working with providers and partners, including Andwell, on a palliative care model that would, among other populations, cover children with medical complexity. We are in the rate-setting stage for this model." 

A broader end-of-life-view: The need for hospice and palliative care extends beyond the elderly, as the patient population at Transitions LifeCare suggestsTriangle Business Journal, Raleigh, NC; by Connie Gentry; 2/7/25 Although the likelihood of developing cancer is highest for anyone over age 65, the American Cancer Society’s annual report on cancer statistics, released last month, noted increasing incidents of many cancer types among younger adults and women. ... But positive outcomes were also reported: The cancer mortality rate in the U.S. declined by 34 percent from 1991 to 2022 and, since 1970, cancer mortality in children 14 years and younger has declined by 70 percent and among adolescents ages 15 to 19 years it has dropped by 63 percent. ... Although the majority of their hospice patients are over the age of 75, Transitions LifeCare is seeing an increase in younger patients. Last year, roughly 9 percent of their hospice patients were under age 65, almost evenly divided between women and men.