Literature Review

American Airlines : Make-A-Wish® and Disney host Wish Flight in support of 28 children battling critical illnesses MarketScreener; 4/3/24American Airlines, Make-A-Wish and Disney will grant the wishes of children battling critical illnesses in celebration of World Wish Month. On April 17, 28 wish families will board the Wish Flight and fly on a one-of-a-kind, chartered plane from Dallas-Fort Worth to Orlando, Florida, to fulfill their wishes to go to Walt Disney World Resort®.

A pilot of a Telehealth-Hospice transition intervention for children and young adults with cancer Journal of Pain and Symptom Management; by Nicholas P DeGroote, Ebonee Harris, Anna Lange, Karen Wasilewski-Masker, James L Klosky, Joanne Wolfe, Dio Kavalieratos, Katharine E Brock; 3/31/24, online ahead of printConclusions: Participants found coordinated telehealth visits to be feasible, acceptable, and satisfactory. Telehealth may be utilized as an acceptable alternative to clinic visits and fosters hospital-hospice collaboration.

Why a Texas system hasn't hired a travel nurse in 30 years Becker's Hospital Review, by Kelly Gooch; 3/28/24 Beth Schmidt remembers the last time Fort Worth, Texas-based Cook Children's Health Care System hired a travel nurse, and it was not recently. ... Many hospitals and health systems increased their reliance on travel nurses during the pandemic to fill vacancies. However, a number of organizations are now making efforts to decrease their dependence for financial reasons. ... [This organization has had 15-20 years success with] the Winter Plan, a program ... [that] allows workers to temporarily become Cook Children's employees for four to six months to help augment the health system's nursing staff. 

At Levine Children’s Hospital, therapy dogs provide “a special kind of medicine” Charlotte Magazine, by Jen Tota McGivney; 3/25/24 Last winter, after a little boy at Levine Children’s Hospital entered end-of-life care, his doctors and nurses wanted to give the boy and his family happy moments together in the hospital. They called in a specialist. Enter Sprout, a 4-year-old Labrador retriever. Sprout is the key member of the Art & Barks program at the oncology and hemophilia clinic at Levine Children’s Hospital.  ... The family spent hours that day at Art & Barks, drawing and taking pictures together and cuddling Sprout. The mementos became priceless works of art. 

$4.25 million gene therapy for kids becomes world's priciest drug NBC LEX18, by Alex Arger; 3/20/24 A lifesaving gene therapy for children born with a rare and debilitating disease has just been approved by the U.S. Food and Drug Administration. The catch? Its wholesale cost has been set at $4.25 million, making it the most expensive medicine in the world. Orchard Therapeutics announced the hefty price for Lenmeldy Wednesday, two days after the FDA approved the therapy as the only treatment for kids with metachromatic leukodystrophy, or MLD. 

Antidepressant prescribing practices of pediatric palliative care providers Journal of Palliative Medicine, by Teresa Venta; 3/12/24 Objective: This study seeks to describe the antidepressant prescribing practices of PPC providers and describe their level of training and comfort in assessing for anxiety and depression and prescribing psychotropic medications. Conclusions: Limited training in assessing mental health concerns, prescribing, and managing psychopharmacology suggests an opportunity for more targeted education for pediatric PC providers regarding antidepressant prescribing practices.

How changing reproductive health laws could impact perinatal hospice Hospice News, by Holly Vossel; 3/8/24 Evolutions in reproductive health laws may have reverberating impacts on the demand and delivery of perinatal hospice care. Perinatal hospice care is provided to families choosing to continue a pregnancy following a life-limiting prenatal diagnosis indicating a high risk of mortality before or shortly after birth. This care includes emotional, spiritual and medical support to families navigating the complexities of a terminal illness. Perinatal hospice providers work closely with health care professionals in neonatal intensive care units (NICU) and reproductive health settings. 

Charity Spotlight: Ryan House and Executive Director Tracy Leonard-Warner Fiesta Bowl - Charity Stories, by Theresa Palmquist; 3/5/24 Every year, the Fiesta Bowl Organization provides financial support to nonprofits across the state in an effort to enhance and elevate the lives of Arizona's youth. In its latest grant cycle, Fiesta Bowl Charities granted $25,000 to the Sponsor-A-Stay fund at Ryan House, a nonprofit pediatric-focused facility that provides respite, palliative and end-of-life care for patients with life-limiting and life-threatening diagnoses. ... It is only one of three facilities like its kind in the United States and is modeled after Helen-House in the United Kingdom, which has more than 50 pediatric respite, palliative and hospice care houses.

Experiences of nursing students providing end of life care for children and young people: A focus group study Elsevier, by Clair Camara, Leah Rosengarten and Jane Callum; 2/27/24This study aims to help improve understanding of the lived experiences of children's nursing students who have cared for a patient at, during, or immediately following end-of-life. The study describes the emotions experienced by children's nursing students and explores the student nurses' perceptions of education and support needs around caring for [Children and Young People] CYP during end-of-life care.

Trends in Pediatric Palliative Care Research: February 2024 ListPedPalASCNET, editor Hal Siden, MD, MHSc, FRCPC; email; 2/26/24PedPalASCNET: A network for accessible, sustainable, and collaborative research in pediatric palliative care. Trends in Pediatric Palliative Care Research, 2024, Issue 01.  

'A blessing': Sarasota family shares importance of hospice care after losing 5-year-old to cancerCBS News 10 Tampa Bay, by Jenny Dean; 2/16/24While the average time in hospice is 70-80 days, some people defy the odds. And that's largely due to the changes in hospice care over the years. A Sarasota family knows how difficult that decision can be. They lost their 5-year-old daughter to cancer and now say hospice care is something they wish they would have gotten sooner.

How to support adolescents and young adults with cancer at the end of lifeThe Oncology Nursing Society Voice, by Kimberly Rivera DNP, RN-BC, OCN®, NPD-BC; 2/12/24... [Cancer] is the fourth leading cause of death in adolescents and young adults (AYAs), following accidents, suicide, and homicide. ... Appropriately defining the difference between palliative and end-of-life care can improve AYAs’ engagement with services such as advance care planning—a specific step that increases AYAs’ likelihood of receiving early palliative care. However, many palliative and hospice care services are geared toward pediatric or adult populations and may not meet AYAs’ unique needs, impeding effective care planning.

See how 5 families balance care and comfort in pediatric palliative careNational Geographic, by Taylor Sisk, photographs by Lynn Johnson; 2/1/24This medical team chooses to help families of children in palliative care prioritize quality of Life over taxing procedures and treatments. Our photo essay offers a glimpse of how they make the most out of life. ... [Interviews and photos are with the] Division of Palliative Medicine and Supportive Care at UPMC Children’s Hospital of Pittsburgh. ... The goal of this pediatric hospice program is clear: Put family first.Editor's Note: Note this source, National Geographic. Where do these photos and stories "take" you? I am grateful for Hospice of Louisville's (now, Hosparus) first hospice pediatric program in the U.S. I served on our Pediatric Care team for 4 years, and was forever, profoundly changed by knowing these children and their families.