Literature Review

30 jolly Santas and Mrs. Clauses are in KC this weekend. Why they may make you cry The Kansas City Star; by Eric Adler; 9/6/25 On Friday morning, inside a convention room at the Hotel Savoy in Kansas City, Santa pulled up a chair to tell a story or two about some of the children, and even adults, he'd visited to bring a last moment of joy. As he spoke, some 21 other Santas, elves and eight Mrs. Clauses from Kansas, Louisiana, Idaho, Wisconsin, some 13 states took to other tables with coffee and muffins for a Santa America symposium about to begin. ... "The difference going in," said Boydston, the nonprofit's current president, "we know what we're going into. We know this is a terminal child. This may be the last time a family gets a smile. This may be the last happy moment." Or maybe it's a visit to a parent who is in hospice, leaving a child behind. ... In those sensitive moments when it doesn't - or for sensitive children - these Santas show up, often at their homes: For a sick child, for a dying child, for grieving children or even worried children whose parent, in the military, may be headed off for deployment. ...

NorthStar Care Community announces partnership with Beads of Courage Fox 17 - West Michigan;by Nicole Stoner; 8/19/25 Beads Of Courage is an organization that helps pediatric patients document their health journey through beads of different sizes, shapes, and colors. ... NorthStar Care Community, already established for their compassion in pallative and hospice care, has announced a partnership with Beads Of Courage. This time, the partnership honors patients entering hospice care through their own treatment stages, milestones, and moments of courage. ... In addition, the Carry A Bead Initiative invites the public to support these patients on their journey during end-of-life care by carrying a NorthStar Bead with them, then returning it with a message of encouragement. The bead is then gifted to someone in hospice care, ensuring that these patients are not alone in their health journey.

New round of grants announced to support grieving youth New York Life; by Newsroom; 8/14/25 The New York Life Foundation, in collaboration with the National Alliance for Children’s Grief (NACG), proudly announces the recipients of the 2025 Grief Reach Community Education Event grants. The grants in this latest cycle are funding local education events that equip professionals — such as teachers, counselors, and social workers — with the skills and knowledge they need to better support bereaved children in their communities. ...

The state of pediatric concurrent hospice care in the United States American Academy of Pediatrics; by Meaghann S. Weaver, MD, PhD, MPH, HEC-CCorresponding Author; Steven M. Smith, MD; Christy Torkildson, PhD, RN, PHN; Deborah Fisher, PhD, RN, PPCNP; Betsy Hawley, MA; Alix Ware, JD, MPH; Holly Davis, MS, APRN; Conrad S. P. Williams, MD; Lisa C. Lindley, PhD, RN, FPCN, FAAN; 8/1/25 The Patient Protection and Affordable Care Act (ACA) required all state Medicaid programs to pay for both curative and hospice services for children and adolescents. The purpose of this Special Article report is to quantify and describe the use of concurrent care for children, including a depiction of the barriers and benefits according to community-based hospice organizations in the United States. A total of 295 hospice organizations from 50 states and Washington, DC responded to the National Alliance for Care at Home call for engagement.

End-of-life course and subspecialty palliative care involvement for children on mechanical circulatory support: Five-center retrospective cohort study from the United States, 2015–2020Pediatric Critical Care Medicine ; by Vazquez Colon, Zasha; Robinson, Lorelei; Lopez-Colon, Dalia; Joong, Anna; Waldman, Elisha; Delgado-Corcoran, Claudia; May, Lindsay J.; Cousino, Melissa K.; Peng, David M.; Lukich, Stevan; Blume, Elizabeth D.; Machado, Desiree S.; M. Moynihan, Katie; 7/25Objectives: To characterize end-of-life (EOL) care and subspecialty palliative care (SPC) involvement in children with heart disease supported on mechanical circulatory support (MCS), including ventricular assist devices (VADs) and extracorporeal membrane oxygenation (ECMO). Most pediatric deaths after MCS occur soon after discontinuation of devices while receiving invasive therapies in ICUs. SPC teams were involved in less than half of the cases, with only 21% being consulted early. SPC was associated with more ACP [advance care planning] and less CPR at EOL.

Millions of car drivers worldwide will now see a hospice message from Capital Caring Health thanks to the app LeadStory Capital Caring Health, Falls Church, VA; Press Release; 7/28/25 Capital Caring Health, a nonprofit hospice for adults and children, includes a special pediatric team called Capital Caring Kids (CCK). CCK is one of the largest dedicated pediatric hospice programs in the nation and is now the first to be recognized around the world through a new AI APP called LeadStory. LeadStory is an interactive personalized news service for car drivers – while the car is in motion, they can voice command any question for all news categories local, national, and international. When the car is stationary video appears on the touch screen. By the end of 2025, LeadStory will be on approximately ten million car touch screens. ... A 30 second video produced by Capital Caring Kids about its special mission of caring for children and their families regardless of ability to pay will appear a minimum of 6 times a week when vehicle touch screens are in video mode.

Certified Child Life Specialists in hospice and palliative care organizations: A state of the professionAmerican Journal of Hospice and Palliative Medicine; by Jennifer Mangers-Deans, Alyssa Friedberg, Kimberly Downing, Lisa C. Lindley; 8/25Certified Child Life Specialists (CCLSs) provide developmentally appropriate psychosocial care to children to promote positive coping. However, little is known about the current professional landscape and opportunities for professional growth, especially in hospice and palliative care. Key insights into the profession, along with challenges and opportunities of working within the hospice and palliative care setting were identified. The findings highlighted the unique need for professional development among CCLSs.

Family first: Embracing milestone achievements in pediatric care Carolina Caring, Newton, NC; Press Release; 7/15/25 ... Cardinal Kids [recently] became the first hospice organization in North Carolina to receive CHAP’s Pediatric Care at Home Certification. This milestone affirms what our patients and families already know: our program delivers care that is not only clinically focused, but also family-oriented, deeply personal, and rooted in hope. For the Cardinal Kids team, seeking the CHAP Pediatric Care at Home Certification wasn’t about achieving something new—it was about sharing the best practices we deliver to every patient, every day. As Cardinal Kids Director Emily Scholler explained, “The benchmarks CHAP presented were already in place at our program. Why not show CHAP how great this pediatric program is?” As part of the CHAP preparation process, our team assessed, developed, and showcased a model of care that’s always been central to who we are. We presented this model to CHAP surveyors as “A Focus on L.I.F.E.”

Pallitus Health Partners receives CHAP Accreditation for Adult Palliative Care and Pediatric Care Certification for Kourageous Kids Pallitus Health Partners, Louisville, KY; Press Release; 7/8/25 Community Health Accreditation Partner, Inc. (CHAP) has awarded Care Guide Partners, Inc. (dba Pallitus Health Partners) CHAP Accreditation under the CHAP Palliative Care Standards of Excellence. The nonprofit also received certification for its Kourageous Kids (KKids) palliative care program. CHAP Accreditation demonstrates that Pallitus Health Partners meets the industry’s highest nationally recognized standards. The rigorous evaluation by CHAP focuses on structure and function, quality of services and products, human and financial resources, and long-term viability. Simply stated, adherence to CHAP’s standards leads to better quality care. ... Pallitus Health Partners, an affiliate of Hosparus Health, offers comprehensive palliative care for serious illnesses in Kentucky and Indiana. Editor's Note: Congratulations to Pallitus Health Partners and Hosparus Health! This accreditation marks yet another milestone of excellence this organization—originally founded as Hospice of Louisville—which pioneered one of the nation’s first pediatric hospice teams in 1980. I had the privilege of serving on the Pediatric Team of Hospice & Palliative Care of Louisville from 1997 to 2001. Profound experiences with these children, their parents, siblings, grandparents, our dedicated team members, and community partners are forever embedded in me. They continue to shape my perspective and purpose in my role as editor in chief of this newsletter.

Grief and bereavement in pediatric palliative care #502Journal of Palliative Medicine; by Lori Wiener, Meaghann S. Weaver; 6/25Grief is the natural emotional response to loss. In pediatric illnesses, grief may be a response to physical loss (a patient missing her own bedroom while admitted to the hospital), a relational loss (separation from peer friendships due to extended hospitalizations), and loss of meaning (ambitions, dreams, or hopes for the future are compromised by a life-limiting illness). For children and families, grief often begins at the time of diagnosis and fluctuates through the disease trajectory.

Solomon Center white paper outlines options to expand health care for children living with serious illnessYale Law School; 6/25/25 As state lawmakers consider establishing a statewide pediatric palliative care program, a new white paper from researchers at the Solomon Center for Health Law and Policy at Yale Law School recommends ways that access to palliative care can be improved for Connecticut’s estimated 7,000+ children living with serious illnesses.

New! Pediatric e-Journal Issue #79National Alliance for Care at Home press release; 6/23/25The 79th issue of the Alliance's Pediatric e-Journal - Community Bridge of Support - is available now! This issue focuses on ways in which individuals, programs, and communities can work together in support of pediatric hospice and palliative care. The e-Journal is available to all through the Alliance website.

Caring beyond cure-Perspectives of pediatric oncology nurses on end-of-life careJournal of Hospice & Palliative Nursing ; Scarperi, Peter BSN, RN; MacKenzie Greenle, Meredith PhD, RN, ANP-BC, CNE; June, 2025In a sample of nursing students and nurses working in pediatric oncology, this mixed-methods study aimed to describe attitudes toward and experiences of providing end-of-life care and examine the relationship between education, work experience, and attitudes. Overall, participants held positive attitudes toward end-of-life care, with staff nurses more positive than student nurses. All participants had provided end-of-life care, yet only 2 (5.41%) thought their education thus far prepared them. Age, education, experience, and burnout were associated with attitudes toward providing end-of-life care. Qualitative themes included challenges of preparedness and training, the nurse’s role, and parent team barriers. Training in pediatric end-of-life care is crucial to improve nurses’ comfort with providing this care.