Literature Review

[Canada] Listening to young people on childhood death: a youth-focused participatory approach to children's palliative and end-of-life research and policymaking Children & Society; by Sydney Campbell, Nika Rovensky, Ryan Kent, Lauren Delaney, Franco A. Carnevale, Mary Ellen Macdonald; 6/23/26 Conclusion: Our study is one of the first to investigate the perspectives of young people in Canada regarding children's palliative and end-of-life (P-EOL) care, and the first in Canada to employ a participatory approach with young people in research about childhood death and dying. ... To date, the lessons we have learned can help researchers from diverse contexts aiming to carry out similar projects related to children's P-EOL care, based in the belief that the only way to truly shift current practices that overlook young people's voices and engagements as meaningful is through continuous advocacy, development, and application of engagement practices in all matters affecting young people.

Poverty level affects end-of-life care in adolescent and young adult cancer patients  Cancer Therapy Advisor; by Liam Andrew DAvenport, MA; 7/24/26 Adolescent and young adult (AYA) cancer patients from high-poverty neighborhoods face disparities in end-of-life (EoL) care, according to research published in the Journal of the National Comprehensive Cancer Network. AYA patients from high-poverty neighborhoods have more emergency department visits and hospitalizations, and less hospice use, than their low-poverty counterparts, study researchers reported. ... Eligible patients had been diagnosed with cancer and died between 12 and 39 years of age, and were enrolled in one of the participant health systems for more than 90 days prior to their death. 

Only one in five U.S. young adults with advanced cancer receive palliative care as part of treatment, study shows American Cancer Society, Atlanta, GA; Press Release; 7/23/26 Young adults with advanced cancer face unique challenges that make palliative care especially important. This population often experiences physical, emotional, and social needs while undergoing treatment, related to their developmental and life-stage transitions. However, a new study by researchers at the American Cancer Society (ACS) reveals that despite a small increase in use over time, only 18.3% of young adults in the United States with advanced cancer received palliative care as part of treatment in 2023. The study is published today in the Journal of the American Medical Association (JAMA) Network Open. 

‘Grief is a beast': Interventional care, palliative care. It's time to consider bereavement care Merced Sun-Star; by Darcel Rockett, Chicago Tribune; 7/17/26 The tattoo on Amari Mead's inner left arm demands attention. Mead calls it her Butterfly Garden. The artwork includes the footprints of Kaiden Amir Tappler ... Kaiden Amir's footprints forever rest where he usually slept in Mead's arms. It was there, as the two slept in the bed in Mead's Auburn Gresham apartment, that he passed away. Kaiden Amir came into the world April 15, 2023, and departed fewer than three months later.

The Healing Page: how Akron Children's combines clinical care with narrative medicine poetry WOSU Public Media | NPR/PBS, Akron, OH ; by Jeff St. Clair; 7/13/26 The written word has healing power. That’s the idea behind narrative medicine, an emerging branch of healthcare that adds creative writing to the clinical toolkit. Akron Children’s Hospital is a leader in narrative medicine, and all this week, Ideastream Public Media is highlighting the program's writers in our series "The Healing Page." Dr. Sarah Friebert is director of Akron Children's palliative care center ... said when sick kids write about what they’re going through, “We tap into an inner spring of wellness and spirituality and wholeness ..." Friebert likened a critical diagnosis to a bomb going off in a family. Her program considers the blast radius of a diagnosis by extending services to impacted family members who are encouraged to write about their experiences and feelings.

2025 Pediatric Facts and Figures Report now available National Alliance for Care at Home, Alexandria, VA; Press Release; 7/8/26 The National Alliance for Care at Home (the Alliance) published the 2025 Pediatric Facts and Figures, a report that provides an overview of pediatric palliative care and hospice in the United States and presents the results of a national survey of providers. The survey that informed the report had a response rate of 56% and yielded 295 entries representing distinct pediatric programs. Responses represent all 50 states and Washington, DC, and the survey was active from May through August of 2024. The report takes a close look at topics like pediatric patient characteristics, location and access to care, reimbursement for care, provider characteristics, barriers and facilitators to care, and concurrent care.  [Download]

Pediatric home-based hospice and palliative care: A scoping reviewBMC Palliative Care; by Ellen Davis, Daniel H Grossoehme, Toluwalase Ajayi, Justin N Baker, Pamela S Hinds, Lisa Humphrey, Jill Ann Jarrell, Rachel Thienprayoon, Sarah Friebert; 5/26Pediatric palliative and/or hospice care is provided across a broad spectrum of settings, ranging from inpatient to outpatient to a child's home. Pediatric home-based hospice and/or palliative care teams offer a specialized, interdisciplinary approach to care, allowing children to stay in the home while offering comprehensive support. Common themes emerged [in this review] including studies analyzing models of care, characterizing the population, end-of-life decision making, clinical outcomes of home-based hospice and/or palliative care, costs and economic impact, family experiences, quality domains, specific treatment modalities, and the use of telehealth. Overall, the available literature supported home-based hospice and/or palliative care as an effective model of care, reducing the burden on families, improving quality of life, and allowing families to stay in their preferred setting for care without sacrificing clinical outcomes.

[United Kingdom] One in five children’s hospices cutting staff or services amid funding pressures, study finds CivilSociety; By eyewave; 6/16/26 Almost a fifth of UK children’s hospice charities are cutting services or employing fewer staff as a result of financial pressures, according to research published today. The research, commissioned by national charity Together for Short Lives, found that while most hospices had managed to maintain service levels over the past year, nearly half had used reserves to do so. A third had reduced short breaks or respite care, while a smaller proportion had cut hospice-at-home services and end-of-life care. The findings came against the backdrop of an 18% sector-wide rise in charitable expenditure year on year, and a 21% increase in overall expenditure.

Kids should be involved in their health care. Here's how to make that happen Medical Express; by Stuart Ekberg, Anthony Herbert, Katie Ekberg, The Conversation; 6/12/26 Research suggests children who actively participate in their own treatment recover faster from surgery, have less anxiety and feel more valued. ... Our new research suggests this may be because we focus too much on what children say, while ignoring the many other ways children communicate. Our study focused on pediatric palliative care services. ... This can include severe cerebral palsy, genetic syndromes such as Trisomy 18, neurological and metabolic conditions such as childhood dementia, and advanced cancers such as leukemia and brain tumors. ... We focused on pediatric palliative care services because they support children of all ages, from infants to young adults. And they support children who can speak and also children who do not speak.

Every bead tells a story: Carolina Caring Foundation invests $5,000 in Beads of Courage® program for children facing serious illness Carolina Caring; Press Release; 6/8/26 For children living with serious illness, every milestone matters. These moments of achievement can include completing a medical treatment, overcoming a hospital stay, celebrating a birthday, or reaching a personal goal for the first time. To help create more of these meaningful moments, the Carolina Caring Foundation has awarded a $5,000 Gift Back Grant to the Cardinal Kids Beads of Courage® program. This grant supports one of the many life enrichment experiences offered to pediatric patients and families served by Carolina Caring. Beads of Courage® is a nationally recognized program that honors the journeys of children facing complex medical conditions.

‘Life-changing’: Florida’s first pediatric hospice and palliative care center to open in Jacksonville News4JAX, Jacksonville, FL; by Tiffany Salameh; 6/2/26 A new center opening in Jacksonville aims to provide children with serious illnesses and their families something many say is hard to find: a place designed specifically for them. The Dorion Family Pediatric Center, set to officially open June 11 inside the Earl B. Hadlow Center for Caring on Sunbeam Road, is being described as Florida’s first dedicated pediatric hospice and palliative care center and one of only a few such facilities in the nation. The center will become the new home of Community PēdsCare, a program that currently serves more than 300 children across Northeast Florida living with serious and complex medical conditions.

Geographic distance between perinatal and pediatric palliative care services and implications for practice standards American Journal of Hospice and Palliative Medicine; by Radion Svynarenko, PhD, Meaghann S. Weaver, MD, PhD, MPH, HEC-C, Ambria Williams, BA,Ashley Kiefer Autrey, MD, DonnaMaria E. Cortezzo, MD, Abigail B. Wilpers, PhD, Abagail D. Cohen, MA, HEC-C,  Lisa C. Lindley, PhD, RN, FPCN, FAAN; 5/14/26 Background: Practice standards recommend early integration of perinatal and pediatric palliative care (PC) with seamless transitions across settings. Little is known about the proximity between these services nationally. Results: 418 pediatric PC physicians and 296 perinatal PC programs were included. Five states (CA, TX, NY, FL, OH) had the highest concentrations of pediatric PC physicians. ... Median drive times to the nearest pediatric PC physician for programs lacking on-site expertise reached approximately 5 hours in NM and SD; 3 hours in ND and MT; and 2 hours in AL, CO, WV, and TN.