Literature Review

For families facing the unthinkable, NPHI launches new Guide to help navigate a child’s serious illness National Partnership for Healthcare and Hospice Innovation (NPHI), Washington, DC; Press Release; 9/14/26 ... Fewer than one in 10 children who die in the United States receive hospice care, underscoring an important opportunity to better support families facing a child’s serious illness. The National Partnership for Healthcare and Hospice Innovation (NPHI), the national voice for nonprofit hospice and advanced illness care, recently released the Advanced Pediatric Care™ Patient & Caregiver Guide — a free national resource created by pediatric hospice and palliative care experts from nonprofit providers across the country to give families something the system has never reliably given them: national clear, trustworthy guidance when a child is seriously ill. [Download the Guide]

Phoenix Home Care & Hospice expands Technology Assisted Waiver Services to Southeast Kansas The Joplin Globe, Joplin, MO; Press Release; 9/15/26 Phoenix Home Care & Hospice has expanded its Technology Assisted Waiver services into six Southeast Kansas counties: Allen, Bourbon, Cherokee, Crawford, Labette and Neosho. ... Phoenix's Technology Assisted Waiver nurses provide individualized care based on each child's medical needs and plan of care. Services may include ventilator management, tracheostomy care, G-tube feedings, medication administration and management, IV therapy, total parenteral nutrition, routine blood draws and other skilled nursing services.

How Latine families navigate pediatric loss amid broken systems: A qualitative study with caregivers and providers using Liberation PsychologyAdvances in Nursing Science; by Patricia Buzelli, Tolu O Oyesanya, Angelli Aguilar, Rosa M Gonzalez-Guarda; 8/26This study explored the challenges and strengths shaping Latine families' experiences of pediatric loss in the United States context. Eighteen semistructured interviews with healthcare providers (n = 7) and bereaved Latine caregivers (n = 11) were carried out using an integrated qualitative descriptive and Liberation Psychology approach. Four themes emerged that are heavily shaped by individual and contextual factors: (1) Unsupportive and hegemonic systems, (2) caregiver and provider discordance regarding end-of-life care, (3) caregiver identity transcendence in the "natural distress of grief," and (4) supportive networks and their limitations. Results highlight sociocultural realities that inform needed structural, policy, and practice changes.

Alliance Pediatric e-Journal: How cultural or religious differences affect care The National Alliance for Care at Home; by the Alliance’s Pediatric Advisory Council; multiple issues, most recent August 2026 The Pediatric e-Journal is the world’s longest consistent pediatric palliative and hospice care publication, continuously published since 2002. ... Welcome to the 84th issue of our Pediatric e-Journal. The focus of this issue is on topics related to cultural or religious differences and how they affect pediatric hospice and palliative care. Cultural and religious differences are often deeply imbedded in the children, adolescents, and family members we serve, not to mention the professionals and volunteers who provide such services. In addition, they are the special province of chaplains and other clergy who help to provide pediatric hospice and palliative care.

Detroit teen’s cancer death sparks 5K walk and new Georgia diploma law hoodline, Detroit, MI; by Jerry McAllister; 8/16/26 A Detroit family walked the riverfront near their old neighborhood this week to honor a 15-year-old whose fight with a rare bone cancer ended in his death nearly two years ago but has since reshaped state law hundreds of miles away in Georgia. GaKobe Milton, who once lived in Detroit before his family relocated to Atlanta, was diagnosed with osteosarcoma at age 13 in 2022 and died on December 10, 2024, after a two-year battle with the disease. His mother, Kuleesha Milton, brought his memory back to the city he called home with a 5K walk at Alfred Brush Ford Park along the Detroit Riverfront. ... Georgia lawmakers signed the GaKobe Milton Act into law in his honor, and Governor Brian Kemp signed House Bill 1284 on May 5, according to the Georgia General Assembly. The law requires local school boards to petition the State Board of Education within 14 days for graduation requirement waivers, allowing schools to award diplomas to terminally ill students receiving end-of-life care, or posthumously if necessary. The act waives completion of all remaining high school graduation requirements for eligible terminally ill students.

Hospice of Michigan receives more than $20k in donations following Josh & Jase visit ABC-13, Grand Rapids, MI; by Mary Dupuis; 8/14/26 The viral social media duo Josh & Jase have helped raise more than $20,000 for Hospice of Michigan's statewide pediatric hospice program this summer. The fundraising campaign was launched in support of the Jo Elyn Nyman Pediatric Hospice Endowment Fund. ... Josh Cauldwell-Clarke and Jase Riley became famous on social media for their travel videos reacting to American food, culture and exciting experiences. ... During their time in Grand Rapids, Josh and Jase spent time with pediatric hospice patients and their families at Hospice of Michigan. After their social media post about the visit, more than 350 donations flooded in to Hospice of Michigan from across the country. 

Josh & Jase bring toys to Hospice of Michigan’s youngest patients, kick off special fundraiser MLive, Grand Rapids, MI; by Tanda Gmiter; 8/3/26 The British TikTok duo Josh & Jase are known for encouraging goodwill as they travel around our state. Last winter’s trek across Michigan saw their tour of Mel Trotter Ministries raise thousands of dollars for the shelter’s programs. This week, they invited their huge social media audience to see the good work being done by Hospice of Michigan, a non-profit that helps those near death - and their families. Josh & Jase visited some of the youngest patients and their families in what turned out to be an emotional day for the social media stars. “Today was one of those days that will stay with us forever,” they wrote on their Facebook account on Friday. ... The duo said they were impressed at how Hospice of Michigan’s staff can be there to support not just the patient, but entire families during what can be a very difficult and heartbreaking time.

[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.