Literature Review

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. 

Penn Medicine provides parents tools to grieve and heal after lossPenn Medicine News, by Kim Maialetti; 1/11/24Perinatal loss is not uncommon in the United States. According to the Maternal Mental Health Leadership Alliance, 30 percent of all pregnancies end in miscarriage and 21,000 babies are stillborn each year. Additionally, more than three of every 1,000 babies born die before 28 days of life and more than five of every 1,000 die before their first birthday.

Pediatric oncology hospice: A comprehensive reviewAmerican Journal of Hospice and Palliative Care, by Ali Tafazoli and Katharine Cronin-Wood; 1/15/24.Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice.

Courageous Parents Network: Decade of helping parents cope with grief and lossFig City News, by Julie M. Cohen; 1/9/24“The reason grief can be so hard is because it can feel so isolating,” Julia Ong reflected while discussing the 2021 death of her younger child, Avery. Even before their daughter died, the Newton resident and her husband, Jordan Bray, experienced the crushing weight of grief upon learning the baby’s diagnosis. They soon learned about a Newton-based nonprofit, the Courageous Parents Network (CPN). The organization, which in 2024 is marking its 10th anniversary, “orients and empowers parents and others caring for children with serious medical conditions, by providing resources and tools that reflect the experience and perspective of other families and clinicians,” according to its website ...

Truth-telling to the seriously ill child – Nurses’ experiences, attitudes, and beliefsNursing Ethics, Sage JournalsFirst published online December 21, 2023Mandy El Ali, Sharon Licquirish, Jenny O'Neill, and Lynn GillamBackground: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child’s bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is worth exploring.

Maryland hospice organization helps parents navigate holidays with terminally ill childrenWTOP-FM (Washington, DC)December 18, 2023When a family has a child dealing with a terminal illness during the holidays, they also live with the harsh reality that their child may not be around for the next year’s festivities. Brian Berger, vice president of care continuum for Hospice of the Chesapeake in Maryland, said parents ask themselves questions like “What can I do with the time and space that I currently have?” and “What experiences can I have with my child?” 

Top 5 ‘Hidden Gem’ Palliative Care News Stories from 2023Palliative Care NewsDecember 18, 2023Reimbursement and regulation reigned in the news this year, but other important trends garnered attention as well. Below are top five under-the-radar stories that, while important, didn’t make our most read this year. The topics range from unmet staff and patient needs, financial and operational headwinds and research fueling innovative care delivery approaches.

Pediatric Palliative Care Providers Seek to Improve Parental EngagementPalliative Care NewsDecember 11, 2023... Parents and guardians frequently experience feelings of stress, anxiety and becoming overwhelmed, issues that pediatric palliative care providers can do better in alleviating, according to Eddie Belluomini, COO of 1Care Hospice & 1Care Kids based in Nevada. ... Many families lack familiarity with the scope of interdisciplinary palliative care and aren’t aware that these services can help address a variety of the physical, social and emotional aspects of serious illness, Belluomini stated. Expanding that education and awareness is a pivotal starting point, he added. 

8-year-old in hospice wants 2,000 cards for his birthday and ChristmasWEWS-TV (Cleveland, OH)December 4, 2023Cleveland, OH—If you are looking to give some love this holiday season, there is a young boy who would appreciate getting a Christmas or birthday card from you. Andrew Miller is an 8-year-old who enjoys cards and loves reading them every day. Linda Miller, Andrew’s mom, said last year, her son was diagnosed with two types of Stage Four cancers. ... “He’s got so many little tumors starting in our inoperable places and there’s nothing we could do about it,” said Linda. So, his parents came up with a plan to get his spirits up again. “Every time something comes in the mail, he’s all excited. So, for his birthday we’re trying to get him 1000 birthday cards,” said Linda. ... If you would like to send a card, the mailing information is: Buddy, Truman House Community Hospice, 716 Commercial Ave. SW, New Philadelphia, OH 44663.