Literature Review

Employing telehealth to ease the hospice transition for kids with cancer mHelathIntelligence, by Anuja Vaidya; 4/23/24 ... In a study published in the Journal of Pain and Symptom Management last month, Children's Healthcare of Atlanta researchers detailed a telehealth-based intervention the hospital has employed to ease the transition to hospice for young cancer patients and their families. ... The intervention includes a series of coordinated telehealth visits during the first month of hospice enrollment for children or young adults, 29 or younger, with cancer. ... Hospice nurses participating in the pilot received a tablet equipped with mobile WiFi cellular service that they would take to the family's home, which enabled the [hospital/pediatric specialty] nurses and families to join the call. ... The most important finding of the study was that coordinated telehealth visits between the hospital, hospice, and the families during the first month of hospice enrollment were feasible and acceptable to all participants.

Defining metrics for assessing end-of-life care quality in children with cancer Physician's Weekly; 4/16/24 In this study, the researchers sought to define the target population for applying newly developed quality measures in end-of-life (EOL) care for children with cancer. Through a series of nominal groups, panelists addressed the question: “Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?” ... A team of pediatric oncology and palliative care clinician-scientists developed a coding structure to analyze responses and identify associated themes and subthemes. 

6-year-old boy battling serious illness sworn in as Lynwood police officer NBC TV 5 Chicago, by Evrod Cassimy; 4/9/24 Child battling serious illness gets wish granted by village. With his hand raised in the air and a round of applause from those in attendance, the Village of Lynwood’s newest cop was sworn in at just 6 years old. Keyjuan Andrewin has dreams of helping people as a police officer and has battled serious health issues for most of his young life. 

The HAP Foundation, CLHPN partner to address unmet pediatric hospice needs Hospice News, by Holly Vossel; 4/5/24The HAP Foundation is partnering with the Child Life Hospice and Palliative Network (CLHPN) to improve awareness of and access to child life services among seriously ill youths and their families. The HAP Foundation helps support research and education in hospice and palliative care. Through the partnership, the organization will help fuel CLHPN’s efforts to expand understanding and utilization of child life specialist services and their benefits for families facing terminal and chronic illness. Child life specialists can help address a range of unmet psychosocial, emotional and spiritual family needs, according to Alyssa Friedberg, CLHPN co-founder.

Bereaved Parent Support Study: Seeking Participants Sylvester Comprehensive Cancer Center/University of Miami Miller School of Medicine, Memorial Sloan Kettering Cancer Cancer, St. Jude Children's Hospital, and Children's Hospital of Philadelphia; 4/2/24This program is offered as a research study examining three types of support for bereaved parents who have lost a child to cancer. The study is jointly sponsored by Sylvester Comprehensive Cancer Center/University of Miami Miller School of Medicine, Memorial Sloan Kettering Cancer Cancer, St. Jude Children's Hospital, and Children's Hospital of Philadelphia; however, families need not have received care from one of these institutions. ...The counseling will be provided through videoconferencing and all activities for this study can be completed in [the participant's] home. ... There will be no charge for any support offered through the study. [Click on the title's link for more information.] 

Pediatric Division - National Coalition for Hospice and Palliative Care National Coalition for Hospice and Palliative Care; 3/28/24The National Coalition for Hospice and Palliative Care’s Pediatric Division represents a multi-disciplinary, volunteer team of pediatric palliative care (PPC) leaders. The Division membership is comprised of representatives from all 14 members of the Coalition, three family advocates, as well as representatives from aligned stakeholder organizations including the American Academy of Pediatrics, American Psychological Association, Association for Child Life Professionals, and the State Coalition Network. 

[Pediatrics] North Dakota Health and Human Services announces new pilot program CBS KX News, by Nathaniel House; 3/26/24 North Dakota Health and Human Services (HHS) has announced that family members who provide extraordinary care to either a child or adult enrolled in an eligible North Dakota (ND) Medicaid 1915(c) waiver may receive payments from the state through the new Family Paid Caregiver pilot program. State funding for the pilot program was approved from the passage of Senate Bill 2276 during the 2023 legislative session. Eligible ND Medicaid 1915(c) waivers include the Autism Spectrum Disorder Birth Through 17 Waiver, Children with Medically Fragile Needs Home and Community-Based Services Waiver, Children’s Hospice Home and Community-Based Services Waiver and the Traditional Individual with Intellectual Disabilities and Developmental Disabilities Home and Community-Based Services Waiver. 

Meaning-making among parents of children with severe neurologic impairment in the PICU Pediatrics / PubMed; by Jori F Bogetz, Ellie Oslin, Maeve O'Donnell, Krysta S Barton, Joyce P Yi-Frazier, R Scott Watson, Abby R Rosenberg; 3/26/24 Online ahead of print Results: Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child.

Lubbock author publishes "I'm on Hospice: A Children's Book for Processing & Coping With a Terminal Illness" CBS WDTV 5; book is by Sydney Crane (author) and Nina Broen (illustrator); tv interview 3/14/24While a child is in the care of a hospice team, they will likely hear words and phrases that they do not know or have questions they are unsure how to ask. Presenting information through Riley's story, I'm On Hospice encourages conversations and facilitates a space for questions, discussion, and understanding within any relationship dynamic surrounding a terminally ill child. Riley is a nine-year-old boy whose life purpose is all about baseball, and he shares how each of his hospice caretakers helps him be comfortable and safe.Editor's Note: This book is available on Amazon and Kindle. The description above is from Amazon, as the tv interview is video.

CT bill would create a statewide pediatric hospice program: 'Make this a reality for our children' The Darien Times, by Cris Villalonga-Vivoni; 3/11/24There are only a handful of agencies specifically providing end-of-life care to children in the state, said Moss, who is also the founder of Connecticut Children’s Hospital palliative care team, the Sunflower Kids. “Every dying child in the state of Connecticut deserves this expertise and support of the hospice program,” Moss said. “It is time we make this a reality for our children.” The need for pediatric hospice care is felt throughout the state, even if the volume of people seeking out these services is often low, said Tracy Wodatch, president and chief executive officer of the Connecticut Association for Healthcare at Home.

Programmatic palliative care consultations in pediatric heart transplant evaluations Pediatr Cardiol, by Erika J Mejia, Rui Xiao, Jennifer K Walter, Chris Feudtner, Kimberly Y Lin, Aaron G DeWitt, Meeta Prasad Kerlin; 3/8/24 Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF on patient-centered outcomes is poorly understood. The present study sought to assess the association of programmatic implementation of palliative care into the heart transplant evaluation process with hospital-free days (HFD) and end of life (EOL) treatment choices. 

Perceptions of interprofessional practitioners regarding pediatric palliative transports Am J Crit Care; by Harriett Swasey, Diana Morrill, Sandra Mott, Shannon Engstrand, and Jean Anne Connor; 3/1/24 Background: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life care. Although studies have shown PPT to favorably affect both children and their families, limited research exists on the perspectives of health care practitioners. 

More than $37,700 raised to fund grief and loss support for children in SWFL Avow Foundation Press Reslease; 2/26/24Avow [Hospice] raised funds throughout January as part of a matching gift campaign with St. John’s Episcopal Church, resulting in more than $37,700 donated in support of the Avow Kids program. St. John’s Episcopal Church pledged to match dollar-for-dollar up to $17,350 for children’s grief and loss support, a goal Avow achieved well before the end of the month.