Literature Review
All posts tagged with “Clinical News | Pediatric News.”
‘It takes a village’: The need to expand community-based pediatric palliative care
06/27/25 at 03:15 AM‘It takes a village’: The need to expand community-based pediatric palliative careHospice News; by Holly Vossel; 6/25/25Similar to adults, many seriously ill children prefer to die in the home versus in facility-based care settings. But several barriers are preventing greater access to goal-concordant, community-based pediatric palliative care delivery. The challenges in some ways mirror issues among adult populations such as insufficient clinical resources, caregiver burden or lagging family support in the home, as well as financial and logistical constraints. However, in the pediatric space, these obstacles are much more complex and nuanced to navigate, according to Allison Grady, pediatric oncology nurse practitioner and chair of the National Association of Pediatric Nurse Practitioners’ (NAPNAP) Pediatric Palliative Care Special Interest Group.
New! Pediatric e-Journal Issue #79
06/24/25 at 03:00 AMNew! 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.
In the passenger seat - The vital role of Certified Child Life Specialists (CCLS) in hospice care
06/23/25 at 03:00 AMIn the passenger seat - The vital role of Certified Child Life Specialists (CCLS) in hospice careIllinois Hospice and Palliative Care Organization podcast; 6/20/25We’re pleased to share the latest episode of In the Passenger Seat, where we explore the vital role of Certified Child Life Specialists (CCLS) in hospice care. In this thoughtful conversation, our guest speakers Rachael Miller and Allison Bush, of Lightways Hospice, share how Child Life professionals help children and families navigate the challenges of serious illness, dying, and grief.[Note: Link downloads this podcast.]
Caring beyond cure-Perspectives of pediatric oncology nurses on end-of-life care
06/21/25 at 03:35 AMCaring 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.
Strategies to prepare hospice providers to interact with adolescents with a parent in hospice
06/21/25 at 03:30 AMStrategies to prepare hospice providers to interact with adolescents with a parent in hospicePalliative & Supportive Care; William Grayson, Denice Kopchak Sheehan, Pamela S Stephenson, Kristen DeBois, Caitlin Sheehan; 5/25The sample included 18 young adults (18-28 years old) whose parents died in hospice or palliative care while they were adolescents (12-18 years old). Semi-structured interviews were conducted virtually via Microsoft Teams. The participants described a variety of skills that are important for hospice providers to know. They provided specific suggestions for hospice providers who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist hospice providers with strategies tailored to an adolescent's specific needs.
The Family CNA Model: Supporting families and improving care for children with medical complexity
06/19/25 at 03:00 AMThe Family CNA Model: Supporting families and improving care for children with medical complexity Mondaq; by Stephanie Anthony, Alixandra Gould, Blair Cantfil, and Jessica Lyons; 6/16/25 Children with medical complexity represent less than 1% of all children in the U.S., but have significant, specialized, and long-term health care needs, accounting for one-third of pediatrics costs in the U.S. ... The Family CNA model trains and reimburses family members—including parents, guardians, siblings, aunts, uncles, and grandparents—to provide certain types of home care for children with medical complexity that would otherwise be provided by a registered nurse (RN), a licensed practical nurse (LPN), or a non-family CNA. This care includes low acuity in-home nursing tasks, such as medication administration, gastronomy tube (G-tube) care, or catheter care. Family CNAs are licensed or certified health care professionals that work in concert with other providers on a child's care team, including RNs and LPNs who provide supervision and perform high-acuity tasks, to support their child's medical needs and activities of daily living at home. The unique benefits of the Family CNA model include: ... [Click on the title's link.]
‘Because I Knew You’: OHSU pediatric physician’s memoir reveals how treating kids helped him heal
06/18/25 at 03:00 AM‘Because I Knew You’: OHSU pediatric physician’s memoir reveals how treating kids helped him healOregon Public Broadcasting (OPB), Portland, OR; by Geoff Norcross, with Robert Macauley; 6/10/25 About 200 pages into Robert Macauley’s memoir, he takes up the big question of why God — if there is one — allows kids to suffer and die. “The best answer I’ve come up with — with three graduate degrees in theology from places like Oxford and Yale, followed by three decades as a physician-priest—is…” The next two pages are blank. This is what he writes next. “In other words, I don’t know. I don’t know why God lets such terrible things happen, which even someone as tragically flawed as me would make absolutely sure to prevent, given a pinch of omnipotence and a nanosecond to act.” Macauley deals with dying kids for a living. He’s a pediatrician at OHSU, and one of the few in the country certified in hospice and palliative care. He’s also an ordained Episcopal priest. His new memoir is called “Because I Knew You: How Some Remarkable Sick Kids Healed A Doctor’s Soul.” He spoke with OPB’s “All Things Considered” host Geoff Norcross.
Colorado exemplifies how to build upon paid leave progress to meet families’ evolving needs
06/11/25 at 03:00 AMColorado exemplifies how to build opon paid leave progress to meet families’ evolving needs A Better Balance; 6/3/25 Colorado continues to pave the way for strong work-family protections by modeling how these policies can be expanded to meet families' needs. This spring, Colorado expanded the state’s paid family and medical leave program (the FAMLI Act, which our Colorado Office helped write and pass) to include an additional 12 weeks of paid leave for parents with a baby in the neonatal intensive care unit. Governor Polis signed the bill into law on Friday, May 30th, and Colorado workers with a child in the NICU will be able to take additional leave under the expansion beginning on or after January 1, 2026. ... For parents with children in the NICU, additional time off work to remain present can be a lifeline during a stressful time.Editor's note: As we know, the fragile and uncertain health of an infant in a neonatal intensive care unit can, heartbreakingly, lead to death. This—one of the most devastating forms of loss—often leaves parents to grieve in silence, their sorrow compounded by the experience of disenfranchised grief. While family and friends care deeply, they frequently falter in their efforts to provide meaningful support. Though it has been more than two decades since I served on the Pediatric Team at Hospice & Palliative Care of Louisville—only four years in total—my memories remain vivid. The emotions expressed by mothers and fathers, grandparents and siblings still rise easily to the surface, reminding me how enduring and raw such losses can be. Bravo ti Colorado's FAMLI Act. May more states follow their lead.
‘The whole family is the patient’: Children’s hospice program in Raleigh receives $2.5 million gift
06/02/25 at 03:00 AM‘The whole family is the patient’: Children’s hospice program in Raleigh receives $2.5 million gift CBS WNCN-17, Raleigh, NC; by Maggie Newland; 5/28/25 Memories of Eliza Craven fill every corner of her family’s home. “She loved art, she loved reading, she loved learning, she loved being outside,” mother Amanda Hayes Craven said. Said father Lee Craven, “She loved her brothers, loved them both fiercely.” In the spring of 2020, that smart, sweet rough-and-tumble 7-year-old got a diagnosis that left her entire family reeling: a brain tumor. ... The family began receiving services through Transitions LifeCare’s Transitions Kids program in Raleigh. ... “The night that she died, it was a weekend night,” Hayes Craven continued. “It was a Friday night. It was after midnight. We expected one nurse and we got an army of people here to support us.” ... While the Craven family wouldn’t wish their pain on anyone, they are grateful that other families facing similar situations can find help through Transitions Kids, which recently received a 2.5 million dollar anonymous gift.
Timing and outcomes of palliative care integration into care of adolescents and young adults with advanced cancer
05/31/25 at 03:20 AMTiming and outcomes of palliative care integration into care of adolescents and young adults with advanced cancerOncology Practice; Jeremiah Bonnet, BA; Colin Cernik, MS; Hajime Uno, PhD; Lanfang Xu, MS; Cecile A. Laurent, MS; Lauren Fisher, MS; Nancy Cannizzaro, BA; Julie Munneke, BA; Robert M. Cooper, MD; Joshua R. Lakin, MD; Corey M. Schwartz, MD; Mallory Casperson, BA; Andrea Altschuler, PhD; Lawrence H. Kushi, ScD; Chun R. Chao, PhD; Lori Wiener, PhD; Jennifer W. Mack, MD, MPH; 5/25Adolescent and young adult (AYA) patients with cancer frequently receive intensive measures at the end of life; many also express care goals that align with a palliative approach. [In this study] nearly three quarters (73%) [of AYA patients] were referred to palliative care before death. Thirty-six percent of palliative care referrals took place before the last 90 days of life; 30% were in the last month of life. Palliative care referrals and their timing were associated with care received at the end of life, with earlier referrals associated with fewer intensive measures near death, including chemotherapy in the last 14 days of life ... as well as intensive care unit admissions, emergency room visits, and hospitalizations in the last month of life ... Patients who were referred to palliative care were more likely to have symptoms assessed in the last 90 days of life, including pain, dyspnea, nausea, diarrhea, constipation, depression, and anxiety ...
Mom takes first picture with new baby, not knowing in weeks he'll be gone
05/27/25 at 02:15 AMMom takes first picture with new baby, not knowing in weeks he'll be gone Newsweek; by Daniella Gray; 5/24/25 A grieving mom has shared the first picture of herself with her newborn baby, not knowing she'd lose him just weeks later. Wunmi Babalola from the West Midlands in the UK, shared photos on TikTok looking at her baby in his hospital crib. In the same carousel on TikTok, Babalola also included the last photo the two of them would have together, just six and a half weeks later. ...
Iowa legislature passes "Mason's Law," with assistance from Children's Respite Homes of America, paving way for 1st Pediatric Palliative Care Center License in the nation
05/20/25 at 03:00 AMIowa legislature passes "Mason's Law," with assistance from Children's Respite Homes of America, paving way for 1st Pediatric Palliative Care Center License in the nation Cision PRWeb; by Children's Respite Homes of America; 5/16/25 Iowa has made history. With final approval from both chambers of the Iowa Legislature, "Mason's Law" (House File HF 933) has officially passed, making Iowa the first state poised to authorize a specialized Pediatric Palliative Care Center license. This landmark legislation now awaits the Governor's signature—anticipated before the end of June—and is set to transform how children with life-limiting conditions receive care in Iowa and beyond. Named in memory of Mason Sieck, a young child who passed away in 2021, Mason's Law represents the tireless advocacy of Mason's parents, Shanna and Curtis Sieck.
Transitions LifeCare receives $2.5 million gift to support Transitions Kids Program
05/20/25 at 02:00 AMTransitions LifeCare receives $2.5 million gift to support Transitions Kids Program Tranisitions LifeCare, Raleigh, NC; Press Release; 5/15/25 Transitions LifeCare is honored to announce a generous $2.5 million gift from a family who wishes to remain anonymous. This heartfelt contribution, pledged over the next five years, comes from a family profoundly impacted by the care they received and is designated to support Transitions Kids—our program providing hospice and palliative care for children. “This gift is incredibly moving,” said Dr. Adam Wolk, CEO of Transitions LifeCare. “It reflects not only the power of compassionate care but also the lasting bond that forms between our team and the families we walk alongside. We’re so grateful for this family’s trust and belief in our mission.”
Living with grief caused by your child’s death
05/15/25 at 03:00 AMLiving with grief caused by your child’s death Bonner County Daily Bee, Sandpoint, ID; by Kathy Hubbard; 5/14/25 “The challenge for many people is to speak about their feelings after the death of a child,” Tami Feyen, RN, manager of Bonner Community Hospice said. “If you haven’t gone through it, you can’t imagine what it’s like.” We were talking about the “tree” with the heart-shaped “leaves” that “grows” in the Children’s Healing Garden. This memorial, designed by artist Betty Gardner was installed in 2019 with the idea that people who had lost a child would have a comforting place to come to remember their loved one(s).
Hillsdale woman celebrates 100th birthday [hospice pioneer, 1970's]
05/06/25 at 03:00 AMHillsdale woman celebrates 100th birthday [hospice pioneer, 1970's] HudsonValley360, Hudson, NY; by Tiffany Greenwaldt-Simon; 5/2/25 A Hillsdale resident is celebrating a big milestone - turning 100. Dr. Irma Waldo was born on May 1, 2025, and recently celebrated joining the centenarian club with an openhouse celebration at the Copake Community Center Friday afternoon. ... [Dr. Waldo] opened her own pediatric practice in Hillsdale in 1952 - often making house calls and getting to know the families she was caring for. ... For Waldo, the most rewarding part of her medical career was the hospice service she helped create, Roe Jan Hospice. She received a call in the 1970s from a doctor in New York City who had a 9-year-old patient with a brain tumor. ... The hospice was expanded to cover the all of Columbia County over the course of 18 years, eventually becoming Columbia County Hospice, and then being absorbed into Hudson Valley Hospice. "That was the best thing, most important part of my practice, forming that hospice," Waldo said.Editor's note: Click here for more history.
Increasing timely code status discussions in hospitalized children with medical complexity
05/03/25 at 03:40 AMIncreasing timely code status discussions in hospitalized children with medical complexityJournal of Hospital Medicine; James Bowen MD; Laura Brower MD, MSc; Daniel Kadden MD; Jasmine Parker BS; Alexandra Delvalle BSN; Andrew Krueger MD; Kristin Todd MSW; Rachel Peterson MD; 4/25Children with medical complexity (CMC) have an increased risk of hospitalization and clinical deterioration. Documentation of code statuses concordant with family goals is rare, increasing the risk of serious unintended consequences. We aimed to increase the percentage of patients with documentation of timely code status orders (CSOs) from 5% to 80% over 6 months. Multiple plan-do-study-act cycles were performed focusing on interventions aimed at key drivers, including increasing knowledge in performing code status discussions (CSDs) and improving understanding of institutional policies. The average percentage of patients who received a CSO placed in their chart within 72 h of admission to the CCT [complex care team] increased from 5% to 61% over 6 months.
Quality measure considerations for pediatric palliative and end-of-life care
05/03/25 at 03:35 AMQuality measure considerations for pediatric palliative and end-of-life careAmerican Journal of Hospice and Palliative Medicine; Hannah Hommes, MSN, RN; Diane Forsyth, PhD, RN; April Rowe Neal, PhD, RN; 3/25 There is an emerging need to provide high-quality pediatric palliative care and end-of-life care to children, adolescents, and young adults with life-limiting illnesses. The aim of this literature review was to explore current quality measures utilized in pediatric palliative care and end-of-life care among pediatric patients with life-limiting illnesses within the conceptual framework of Comfort Theory. Emergent themes among quality measures were categorized into 7 domains: (a) Alleviation of distressing symptoms, (b) Structures and processes of care, (c) Health care utilization, (d) Location of death and bereavement care, (e) Patient and family experiences, (f) Psychological and spiritual care, and (g) Cultural, ethical, and legal considerations. These domains support the physical, psychospiritual, sociocultural, and environmental contexts of Comfort Theory. Quality measure research, development, and standardization should focus within the 7 domains identified for the promotion of comfort, equity, and accessible care.
7-year-old Clayton girl battling stage 4 cancer enters hospice care at her home
04/24/25 at 03:00 AM7-year-old Clayton girl battling stage 4 cancer enters hospice care at her home CBS-17 News, Raleigh/Clayton, NC; by Matthew Sockol, Maggie Newland, Greg Funderburg; 4/18/25 A seven-year-old girl battling an aggressive cancer has returned to her home in Clayton, her family said Friday. Noelle Franklin was diagnosed with stage four osteosarcoma less than a year ago and received treatment at UNC Children’s Hospital. In a video post on the Noelle Strong Facebook page, her mother Toni said Noelle is entering hospice care at their home. “The staff of UNC went above and beyond,” Toni Franklin said in a statement. “The care Noelle had was more than we could ask for. “Noelle has touched so many people, not just in our community, but in the hospital too,” she continued in her statement. “Seeing how many people came to celebrate Noelle breaking out overwhelmed me with joy. We paraded three different floors, wouldn’t expect anything less for Noelle. “We are home. We are at peace.”
Special team at Norton Children's Hospital focused on giving the gift of life
04/23/25 at 03:00 AMSpecial team at Norton Children's Hospital focused on giving the gift of life CBS WLKY-32, Louisville, KY; by Jennifer Baileys; 4/21/25 Caring for sick and dying children is a tough and heartbreaking job. One special group at Norton Children's Hospital is focused on helping these children and their families. ... "She's missing the left side of her heart," Kindra Edwards, patient mother, said. ... Edwards said there was one consistent source of strength and encouragement the Norton Pediatric Support Team. "They're always there. You know, coming in, checking on us when in our multiple stays at the hospital," Edwards said. The team is made up of pediatric and palliative care specialists, nurses, social services, therapist and pastoral care. ... [Through two decades,] pediatric palliative care has evolved. At Norton Children's Hospital it has grown into a team of almost a dozen people, specializing in not just treating, but caring for the sickest patients and their families.
Aveanna CEO Jeff Shaner: Medicaid uncertainty detrimental to markets
04/17/25 at 03:00 AMAveanna CEO Jeff Shaner: Medicaid uncertainty detrimental to markets Home Health Care News; by Audrie Martin; 4/16/25 Earlier this month, Aveanna Healthcare Holdings (Nasdaq: AVAH) announced plans to acquire Thrive Skilled Pediatric Care for $75 million. ... This expands Aveanna’s private-duty services, home health and hospice care, and medical solutions in 27 states. ... Home Health Care News spoke with Aveanna CEO Jeff Shaner about this acquisition, future M&A plans, the impact of potential Medicaid cuts and the value of home-based care. ... Shaner: Regarding the broader M&A strategy, I would say M&A is not our core strategy; caring for pediatric, adult and geriatric patients remains our core mission. However, enhancing our growth profile through add-on acquisition strategies, primarily in our Medicaid business, private-duty service business like Thrive, and home health and hospice businesses, is our focus in 2025 and 2026. ... However, the uncertainty regarding Medicaid and federal funding prompts us to reconsider any long-term investments and ensure we have strategically contemplated the reasons for such investments.
For AYAs with advanced cancer, study finds serious communication gaps about their care
04/16/25 at 03:00 AMFor AYAs with advanced cancer, study finds serious communication gaps about their care National Cancer Institute; by Daryl McGrath; 4/15/25 Many adolescents and young adults (AYAs) with advanced cancer don’t have discussions with their clinicians about how they want to approach palliative care until the final weeks of life, a study of medical records of nearly 2,000 young patients showed. ... Talking about care and treatment near the end of life is one of the most challenging aspects of caring for AYAs with advanced cancer, said Ashley Wilder Smith, Ph.D., M.P.H., of NCI’s Healthcare Delivery Research Program and co-leader of NCI’s Adolescent and Young Adult Oncology Working Group. ... “When a young person is faced with a disease that may lead to an early death, it’s vitally important to give them the opportunity to think about what’s most important to them and what happens to them in terms of care in the time they have left,” she said.
Hiding in plain sight: A narrative review of non-parental relatives' perinatal grief
04/12/25 at 03:30 AMHiding in plain sight: A narrative review of non-parental relatives' perinatal griefJournal of Social Work in End-of-Life and Palliative Care; Rennie Bimman, Nancy Graham; 3/25Perinatal loss frequently leads to disenfranchised grief, and members of family systems less proximate to the loss are at risk for additional disenfranchisement. Grandparents and siblings are especially vulnerable to complications in perinatal grief due to intersecting and disenfranchising factors of identity, including age, role within family, and type of loss. Evidence found attested to the uniquely complex grief experiences these populations face as a result of their confluent disenfranchisement, and their overwhelming lack of support and recognition. New insights uncovered may inform clinicians as they assess needs and provide support to these oft-ignored grievers. Significant research gaps remain in this subtopic, such as firsthand perspectives of nonparental grievers, data on other extended family members, and the effect of additional psychosocial stressors on nonparental perinatal grief.
Ambiguous loss: Implications for perinatal and neonatal nurses
04/12/25 at 03:25 AMAmbiguous loss: Implications for perinatal and neonatal nursesNeonatal Network; Rachel A Joseph, Mary Highton; 3/25Ambiguous loss, a term coined by Pauline Boss, is a state in which there is no actual "death" and, therefore, no "grieving" or closure associated with it. Pregnancy is a happy event most of the time; however, the loss of pregnancy can be distressing to the parents. While the birth of a child is expected to be a joyful event, premature birth and subsequent admission to the NICU for prolonged periods with fluctuating conditions force the parent to be in a constant crisis mode where the outcome is unknown. This can mentally, physically, and emotionally drain the parents and may cause depression or other mental health challenges. Perinatal and neonatal nurses are uniquely positioned to recognize the warning signs of emerging grief crises in the parents and support them appropriately.
Interventions for prolonged grief disorder in children and adolescents: A systematic review
04/12/25 at 03:20 AMInterventions for prolonged grief disorder in children and adolescents: A systematic reviewJournal of Child & Adolescent Trauma; Sarah Bondy, Haleigh Scott; 3/25 Prolonged Grief Disorder (PGD) was added as a new diagnosis to the Diagnostic and Statistical Manual of Mental Disorders 5 Text Revision (DSM-5-TR). There is a need to tailor interventions to children and adolescent populations, but there is a lack of consensus on best practices for treating PGD in these populations. Interventions were grouped by modality including group treatments, hybrid treatments (combined group or individual therapy with family therapy), family treatment, and individual treatment. Cognitive Behavior Therapy (CBT), Attachment Theory and Multidimensional Grief Theory were common theoretical bases for interventions and all shared elements of psychoeducation and integrating knowledge about the loss with existing knowledge. Results for each intervention were found to be generally positive in reducing PGD symptoms.
[France] Supportive care needs of childhood, adolescent and young adult cancer survivors: A systematic mixed study review
04/05/25 at 03:00 AM[France] Supportive care needs of childhood, adolescent and young adult cancer survivors: A systematic mixed study reviewCancer Care Research Online; Baudry, Valentine MS; Bertrand, Amandine MD; Bottichio, Margaux MS; Escot, Noémie MS; Despax, Johanna PhD; Girodet, Magali PhD; Christophe, Véronique PhD; 4/25This literature review shows that CAYA [childhood, adolescent, and young adult] cancer survivors still have SCN [supportive care needs] long after the end of treatment, which is specific to the challenges they face at these developmental stages and may evolve over time. Survivors still report needs related to information, medical care, psychology, sexuality, fertility, and age-specific care. Social life, finance, work, and education needs were also present, but at a lower scale. Future research should clarify these links, to explore the evolution of needs over time, to distinguish specific CAYA subgroups, to examine time since diagnosis or completion of treatment, and to better specify the SCN of child survivors to present relevant results.