Literature Review

[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.

The role of bioethics services in paediatric intensive care units: A qualitative descriptive studyBMC Medical Ethics, by Denise Alexander, Mary Quirke, Jo Greene, Lorna Cassidy, Carol Hilliard, and Maria Brenner; 2/19/24Results: From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork.

Kim Mooney-Doyle awarded nearly $500,000 to study communication needs in families of seriously ill childrenThe Elm of the University of Maryland, by Mary Therese Phelan; 2/15/24Kim Mooney-Doyle, PhD, RN, CPNP-AC, assistant professor at the University of Maryland School of Nursing (UMSON), has been awarded a two-year R21 grant of $460,000 from the National Institute of Nursing Research (NINR) to research how understanding family communication during serious pediatric illness, from the perspective of adolescent siblings and parents, provides opportunities to prevent long-term distress.

Sally Norden's skydive for Children's Hospice South West: A leap of faith for a good causeBNN, by Mazhar Abbas; 2/13/24Sally Norden took a leap of faith and skydived from 15,000 feet to raise funds for Children's Hospice South West. Her courage and dedication to the charity inspired others to support the cause.

Increasing access to care: Designing a blended curriculum to educate adult hospice nurses in caring for pediatric patientsNursing Forum, by Paige L. McDonald, Samia M. Abdallah, Laurie B. Lyons, and Deborah Fisher; 1/29/24Access to care for pediatric hospice patients is inhibited by a lack of providers specifically educated to care for pediatric patients. Education that seeks to address this gap in care must develop the specific knowledge and skills required to care for pediatric patients, and this education must also be delivered in a format that enables convenient access to providers. 

Northwestern researchers find significant racial disparities in pediatric health careThe Daily Northwestern, by Isaiah Steinberg; 1/21/24Despite controlling for health insurance status, researchers found vast disparities in health care quality in several pediatric specialties such as neonatal care, emergency medicine and palliative care. ... Researchers saw greatest disparity in care occurred in pain management, with non-white children less likely to be prescribed painkillers for serious medical conditions.

The psychological experience of grandparents: proposal of a qualitative clinical assessment tool in pediatric palliative careClin Pract, by Alexandra Jóni Nogueira and Maria Teresa Ribeiro; 1/4/24Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context.