Literature Review
All posts tagged with “Clinical News | Pediatric News.”
Iowa introduces "Mason's Law" to become 1st state to have a pediatric palliative care center license
04/02/25 at 03:00 AMIowa introduces "Mason's Law" to become 1st state to have a pediatric palliative care center license Cision PRWeb, Des Moines, IA; by Children's Respite Homes of America; 3/31/25 In a historic move, the Iowa State Legislature has taken a groundbreaking step to support families with medically fragile children by introducing House File HF 933 (formerly HSB 267). This legislation, known as "Mason's Law," would make Iowa the first state in the nation to establish a dedicated "Pediatric Palliative Care Center" license, laying the foundation for a new model of care for children with chronic, complex, and life- threatening illnesses.
[UK] Play 'humanizes' pediatric care and should be key feature of a child-friendly NHS, report suggests
04/01/25 at 03:30 AM[UK] Play 'humanizes' pediatric care and should be key feature of a child-friendly NHS, report suggests Medical Xpress; by University of Cambridge; 3/30/25 The report, by University of Cambridge academics for the charity "Starlight," calls for play, games and playful approaches to be integrated into a "holistic" model of children's health care—one that acknowledges the emotional and psychological dimensions of good health, alongside its physical aspects. ... Both internationally and in the UK, health systems have, in recent decades, increasingly promoted play in pediatric health care. There is a growing understanding that making health care more child-friendly can reduce stress and positively improve younger patients' experiences. Despite this recognition, play often remains undervalued and inconsistently integrated across health care contexts. For the first time, the report compiles evidence from over 120 studies to make the case for its more systematic incorporation. [Continue reading ...] Editor's note: Click here to access the report, Playing with children's health?
Port St. Lucie Police honor 10-year-old with badge for his birthday celebration
04/01/25 at 03:00 AMPort St. Lucie Police honor 10-year-old with badge for his birthday celebration TCPalm, Port St. Lucie, FL; by Eric Hasert; 3/29/25 William Rivero enjoys a 10th birthday with family, friends, and Port St. Lucie Police at his parent’s home on S.E. Nancy Lane on Saturday, March 29, 2025, in Port St. Lucie. William Rivero has muscular dystrophy and is under hospice care, and wanted to be a police officer, so the Port St. Lucie Police got him a small uniform, along with a badge, and swearing in with Chief Leo Niemczyk.
Honoring a young girl’s love of nature on her final day
03/31/25 at 03:00 AMHonoring a young girl’s love of nature on her final dayMayo Clinic News Network; by Mayo Clinic Staff; 3/27/25 On a Saturday evening in September of 2024, Mae Helgeson arrived at Mayo Clinic in Rochester, her small body reeling from the trauma of a life-threatening accident. Although she was intubated and sedated, it didn't take long for the care team to learn what made this little girl special. ... "I often ask parents to tell me about their child. Is there anything you think is important or that I should know about your family?" says Paige Dighton, one of the Child Life specialists who partnered with Mae's family. "This allows them to share the special things — those unique qualities that make them a family. You learn more than just what's in their chart." ... It was only a couple of days later that Mae's family was faced with the devastating decision they'd hoped to avoid. ... The question shifted from "Can we save her?" to "How do we say goodbye?" Following their lead, the team began focusing on end-of-life care. "Dr. Schiltz gave us the space to think and process our emotions — it didn't feel rushed," says Matt.
Children as living solid organ donors: Ethical discussion and model hospital policy statement
03/29/25 at 03:15 AMChildren as living solid organ donors: Ethical discussion and model hospital policy statementThe Journal of Clinical Ethics; Gyan C. Moorthy, Aidan P. Crowley, and Sandra Amaral' Spring 2025In recent years, more attention has been paid to living donation as a means to reduce the suffering of individuals with end-stage kidney or liver disease. Implicated ethical issues include medical risk and risk of coercion, counterbalanced by improved medical outcomes and the benefits of saving a life. Living donation becomes particularly ethically complicated with the prospect of child donation, given the child’s developing autonomy and uniquely dependent status. We outline four broad ethical considerations pertinent to living child organ donation: (1) beneficence, (2) respect for the family as a moral unit, (3) respect for the child as a person, and (4) justice. We conclude that it can be ethical for a healthy child to donate a kidney or liver lobe to a close relative who has exhausted other options provided that certain protections are put into place.
Ohio reported its first measles case in 2025. Here’s what you need to know about this highly contagious virus.
03/26/25 at 03:15 AMOhio reported its first measles case in 2025. Here’s what you need to know about this highly contagious virus. Signal Cleveland, Cleveland, OH; by Sue Zake and Reegan Davis Saunders; 3/25/25 An unvaccinated adult in Ashtabula contracted the first case of measles in Ohio, according to the Ohio Department of Health. The individual had contact with someone who recently traveled internationally and was confirmed to have contracted the highly contagious respiratory virus. ... As of March 20, the CDC has reported 378 confirmed cases in the U.S. — 95% of those who became ill were either unvaccinated or had an unknown vaccination status. Twenty-seven percent of children under 5 years of age who contracted measles have been hospitalized since Jan. 1. Here’s more information to help you understand the disease and protect yourself and your family [and prfoessionals]. [Continue reading ...]
How our partnership with LovEvolve fosters the message of compassionate care
03/21/25 at 03:00 AMHow our partnership with LovEvolve fosters the message of compassionate care Carolina Caring, Newton, NC; 3/20/25 ... Founded and designed by professional artist Sunny Goode, LovEvolve is a mission-driven organization producing scarves, blankets, and swaddles which hold creative attention to color theory and the message of love. ... LovEvolve has distributed their products across thirteen hospitals nationwide, allowing over 61,000 newborns to be wrapped in love. ... Cardinal Kids [Carolina Caring's pediatric palliative medicine and hospice program] began distributing LovEvolve blankets and swaddles to our hospice patients in December 2024. Though these items are a recent addition to our story, families have already shared that these gifts bring lasting meaning to their hospice experience. These blankets are memory makers, reminding families of the impact that their child has had on this world. Sometimes, parents use the blankets whenever they spend the night with their children at the hospice house. The blankets have also been regifted to siblings as a tangible reminder of their brother or sister. The visual cue of love has been a source of peace for many of our Pediatric nurses, as well.
The preference for acute rehospitalization scale: Evaluating preference for acute rehospitalization in pediatric hospice patients
03/15/25 at 03:10 AMThe preference for acute rehospitalization scale: Evaluating preference for acute rehospitalization in pediatric hospice patientsJournal of Palliative Medicine; Kelley Newcomer, Katherine Maddox; 3/25Since the passage of the Affordable Care Act, children are able to access pediatric hospice while still pursuing life-prolonging care. This can create confusion between hospice and palliative care staff and families about current goals of care (GOC), which evolve over time. Hospice and palliative care teams created, implemented, and evaluated a five-point scale to summarize the Preference for Acute Rehospitalization (PAR) Scale for children on concurrent care hospice. Most users reported they agreed or strongly agreed the PAR Scale helped them to understand families' GOC and feel more confident giving advice with urgent questions.
Children's Respite Homes of America aims to address the severe lack of children's respite and palliative care homes in the U.S.
03/13/25 at 02:00 AMChildren's Respite Homes of America aims to address the severe lack of children's respite and palliative care homes in the U.S. Cision PRWeb, Scottsdale, AZ; by Children's Respite Homes of America; 3/11/25 Twenty years ago, there were no dedicated children's respite and palliative care homes in the United States. Today, there are only a handful. By contrast, the United Kingdom—a country one-fifth the size of the U.S.—has developed a network of 54 children's respite and palliative care homes. Based on population, the U.S. would need over 250 similar homes to provide equitable access. The disparity leaves countless families without essential respite care, and Children's Respite Homes of America aims to change that. ... Cottor, who co-founded Ryan House in Phoenix, Arizona, alongside his wife Holly and with strong community support, established Children's Respite Homes of America with an ambitious but necessary goal: to develop 50 children's respite and palliative care homes in 50 cities within the next five years. ...
[Ukraine] ‘Support to the end’: Religious sister brings palliative care to unborn babies in Ukraine
03/12/25 at 03:00 AM[Ukraine] 'Support to the end’: Religious sister brings palliative care to unborn babies in Ukraine The Catholic World; by Hannah Brockhaus; 3/10/25 Since 2020, a pandemic and then an active war have caused untold tragedy for Ukrainians, but these circumstances have also allowed the country to confront death and grief in a way it never did before, according to a religious sister who offers palliative care to unborn children and their families. In Ukraine, “one couldn’t and wouldn’t talk about death before the COVID pandemic,” Sister Giustina Olha Holubets, SSMI, told CNA earlier this month. The more open a society is about death and loss and grief, she said, the easier it is to know how to respond to a family going through the pain of losing a child in the womb or shortly after birth. A Byzantine Catholic and member of the Sister Servants of Mary Immaculate, Holubets has degrees in bioethics, psychology, biology, and genetics. In 2017, she founded the nonprofit organization “Perinatal Hospice – Imprint of Life” in Lyiv, Ukraine, which she currently leads. ...
Trends in Pediatric Palliative Care Research (TPPCR) 2025; Issue #2
03/11/25 at 03:00 AMTrends in Pediatric Palliative Care Research (TPPCR) 2025; Issue #2 Siden Research Team; Commentary by Kim Mooney-Doyle, MD; 3/6/25Kim Mooney-Doyle – University of Maryland School of Nursing, MD, USA: I am a nurse scientist dedicated to advancing family health in serious pediatric illness. I have studied parent-sibling relationships and the social ecological factors that impact it for the past decade. ... Siblings are special and, too often, invisible in the care of seriously ill children, adolescents, and young adults. Two articles in this month’s collection bring the needs and experiences of siblings into focus using a family lens. A key take-away from this important work is that while siblings want to communicate with their parents about their brother’s or sister’s illness, it can be hard to initiate such conversations. As clinicians and researchers, we can work with families to devise strategies that foster these conversations, such as providing prompts or a scripted conversation guide to help a parent engage the sibling.
Rare flu complication rose in recent years
03/07/25 at 03:00 AMRare flu complication rose in recent years Medscape; by Heidi Splete; 3/4/25 Reports of children in the United States with influenza-associated encephalopathy or encephalitis (IAE) increased from none during the 2020-2021 flu season to a preliminary 14% for the 2024-2025 season, based on a new analysis from the Centers for Disease Control and Prevention (CDC). IAE involves a range of neurologic syndromes triggered by flu infection of the respiratory tract, with diagnosis based on brain lesions detectable on imaging, wrote Amara Fazal, MD, and colleagues at the CDC’s National Center for Immunization and Respiratory Diseases. A series of anecdotal reports of pediatric cases with IAE in January 2025 prompted the CDC’s investigation; the findings were published in the Morbidity and Mortality Weekly Report (MMWR).
A hospice for kids: Grinnell family eyes Iowa City for state's first pediatric hospice
03/07/25 at 02:00 AMA hospice for kids: Grinnell family eyes Iowa City for state's first pediatric hospice Des Moines Register, Des Moines, IA; by Richard Hakes; 3/6/25 A Grinnell couple’s dream to help other families after they lost their young son to a rare disease took a big step forward in Iowa City just a few days ago. Shanna and Curtis Sieck’s non-profit called Mason’s Light House has signed a contract for land just west of the Johnson County Historic Poor Farm as the initial step toward building Iowa’s first pediatric hospice. Named in honor of their son, the facility is expected to be only the fourth in the United States. ... Mason’s Light House would accept up to seven children for both hospice and respite care, provide family suites and be fully staffed with a pediatric palliative care team of nurses, social workers, therapists and other specialists in the field. There would be no cost to patients and their families who use it.
19-year-old says home hospice is a gift, not doom and gloom
03/03/25 at 03:00 AM19-year-old says home hospice is a gift, not doom and gloom Keloland Media Group, Sioux Fall, SD; by Tom Hanson; 2/27/25 ... Cheyenne may be 19, but she is wise beyond her years, especially when it comes to something doctors discovered when she was 11. “I have stage 4 Metastatic Osteosarcoma, which is bone cancer in my lungs and It hasn’t responded very well to treatment, so that’s so I’m on hospice, but not because, I’m not on hospice because its the end right now, I’m on hospice because just so I have that extra support,” she said. Cheyenne knows people often misunderstand what hospice is all about. “It’s like doom and gloom and it’s like the end, there’s nothing they can do and that’s just not the case, she said. She was able to go on her road trip because Sanford’s Home Hospice team, including Becky Jibben, helped plan the trip and organize support teams along the way if Cheyenne needed help.
Influence of culture and spiritual tradition on support for families of children dying in intensive care units
03/01/25 at 03:20 AMInfluence of culture and spiritual tradition on support for families of children dying in intensive care unitsJournal of Pediatric Nursing; Sung-Jin Jeanie Ju, Janie Ito, Aubree Lin, Dagmar Grefe, Jennifer Baird, Rebecca Ortiz La Banca Barber; 2/25Parents utilize spirituality as a means of coping during and after a child's death. Complexity of grief associated with loss of a child suggests the paramount importance of providing appropriate support for parents while experiencing their child's critical illness or end of life. Findings indicated three themes that illustrate the end-of-life and bereavement process: 1) Coping during hospitalization and the end-of-life stage; 2) coping during the bereavement stage; and 3) advice for parents and staff. To integrate the results into practice, hospital-wide education for staff on the importance of cultural and spiritual sensitivity is recommended. Additionally, collaboration with spiritual care teams, especially for patients and families facing complex diagnoses or advance care planning, will enhance the provision of culturally and spiritually sensitive care.
Development of an interprofessional clinician training in pediatric serious illness communication
03/01/25 at 03:15 AMDevelopment of an interprofessional clinician training in pediatric serious illness communicationJournal of Palliative Medicine; Danielle D DeCourcey, Rachelle Bernacki, John Carozza, Sithya Lach, Andrea Wershof Schwartz; 2/25Early advance care planning (ACP) is associated with improved outcomes in pediatrics, yet few rigorously developed curricula exist to train interprofessional clinicians in ACP communication. We developed an interactive, skills-based three-hour synchronous online clinician training program using Kern's Six-Step Curriculum Design, incorporating didactic and simulated patient encounters with a trained actor. Following training, 97% of participants were highly satisfied with training quality, and 100% endorsed that they would recommend it to colleagues. Additionally, clinician self-reported comfort discussing fundamental elements of ACP significantly increased following the training.
North Texas doctor helps parents facing infant loss deal with the unimaginable
02/27/25 at 02:00 AMNorth Texas doctor helps parents facing infant loss deal with the unimaginableCBS News - Texas; by Andrea Lucia, Lexi Salazar, Katie Standing; 2/25/25[Background story for parents Yvette and Thoms Ngo upon dealing with the news that their in-utero baby girl Zoe was diagnosed with Trisomy 13, would likely miscarry, or die soon after birth. Dr. Terri Weinman, their neonatologist offered rich palliative care interventions and support.] "When we met Dr. Weinman and her team the first time, she would say things like, 'So, what are we going to do when Zoey is here,' which changed my mindset completely," Yvette Ngo said. ... For the first time, the Ngos began to consider what Zoey's life, short as it might be, could look like. "It made us more comfortable with the situation, I mean as comfortable as you can be," Thomas Ngo said. "She just gave us hope." Zoey was born on April 18, 2024. She met her parents, her siblings and her grandparents. She was baptized. "They made us little crafts and mementos for us to take home, like footprints, really ways to help cherish Zoey's life," Yvette Ngo said. "They took her heartbeat and recorded it for us. Little things that we wouldn't necessarily think of." Zoey even had a chance to go home. But after 36 hours of life, Zoey passed away in her father's arms. The perinatal palliative care Zoey received remains rare. But for families like the Ngos, it provides a small sense of control when it's needed most. "Being able to plan so much in advance and think about all the different scenarios and how we wanted it," Yvette Ngo said. " I think, looking back on our time with Zoey..." "We wouldn't have done anything differently," Thomas Ngo said. Editor's note: Pair this with "Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing students," posted 2/24/25.
Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing students
02/24/25 at 03:00 AMImproving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing studentsState Nurses Associations - Kansas State Nurses Association; by Shelby True, MSN, RN; Libby Rosen, PhD, RN, IBCLC; Ashley Seematter MSN, RN; Jeri Harvey & Karly Lauer, MSN, RN; 2/20/25Many baccalaureate nursing programs throughout the United States thread concepts of bereavement and end-of-life care throughout their curriculum. However, a standardized education program for nursing students that increases the knowledge, confidence level, and application of skills a nurse must possess when providing perinatal bereavement care is often absent from the curriculum (Sorce & Chamberlain, 2019). Perinatal loss can have a profound impact on parents and their loved ones, leading to emotional, psychological, physical, and spiritual trauma that deeply affects the lives of those involved. The nursing care each parent receives at the time of the loss may be remembered for years to come and is crucial to determining the nature of the grieving process (Sorce & Chamberlain, 2019). ... To improve the knowledge, confidence, and skill level of nurses providing perinatal bereavement care, a role-play perinatal bereavement simulation was developed and implemented in two Midwestern universities’ baccalaureate nursing programs in the maternal/newborn courses. Editor's note: Having served our hospice's Pediatrics Team for four years, the grief of parents, grandparents, siblings affected me deeply. I remember vividly a young mom unable to physically leave her baby's body with the hospital's nurse. Gently, we held her baby together. Over the course of about 15 minutes, the mother gradually shifted the weight of holding her baby over to me, before the hardest task of her life--leaving the hospital without her child. (It was Christmas week. I bawled when I got home.) Visiting them at the funeral home and after in their home, I experienced horrible, disenfranchised comments and attitudes from others (especially a local preacher). Leaders: tune into your pediatric hospice and palliative team members. What specialized support and education do they need? And, we never know what personal stories of perinatal bereavement those around us continue to carry.
Over a quarter of adolescents, young adults with cancer who want to die at home do not
02/21/25 at 03:00 AMOver a quarter of adolescents, young adults with cancer who want to die at home do not Healio; by Jennifer Byrne; 2/20/25 More than one-fourth of adolescents and young adults with cancer who wished to die at home did not attain this goal, according to research published in JAMA Network Open. Researchers conducted a retrospective cohort study that included adolescents and young adults (AYA; age range, 12 to 19 years) with cancer who died between 2003 and 2019. The cohort included patients treated at Dana-Farber Cancer Institute, Kaiser Permanente Northern California or Kaiser Permanente Southern California. ... Healio spoke with Odejide about the rationale for the study, the importance of the findings, and strategies oncologists can employ to ensure more goal-concordant end-of-life care for AYA patients with advanced cancers. [Click here for Helio's discussion with the lead researcher, Oreofe O. Odejide, MD, MPH, associate professor of medicine at Dana-Farber Cancer Institute.] Editor's note: Examine this JAMA article, which we posted in our Saturday Research issue, 1/18/25: "Preferred and actual location of death in adolescents and young adults with cancer."
Long-term health care use among children surviving multiple organ dysfunction
02/15/25 at 03:40 AMLong-term health care use among children surviving multiple organ dysfunctionJAMA Network Open; Robert Ohman, MD, MPH; Jerry J. Zimmerman, MD, PhD; 1/25Mortality outcomes of pediatric critical illness have improved over the last several decades, while concurrently the population of patients with technology dependency and complex chronic morbidities has continued to grow and the incidence of MOD [multiple organ dysfunction] has simultaneously increased. In the setting of declining critical illness mortality, pediatric outcomes research has broadened its scope to assess metrics beyond mortality, describing the trajectory of recovery from critical illness with measures of patient quality of life; physical, cognitive, and functional status; and family psychological and economic well-being. As the authors point out, assessment of the larger financial impact of this higher health care utilization on families themselves would be valuable future knowledge, as high health care utilization, appointments, and recurrent hospitalizations may detract from families’ ability to work, care for their other children, and attend to their own medical needs. Targeted support for families of survivors of MOD may be necessary to minimize these secondary impacts and to optimize outcomes for this vulnerable population of patients.
Bringing children home: Kentucky Children’s Hospital’s approach to pediatric end-of-life care
02/12/25 at 03:00 AMBringing children home: Kentucky Children’s Hospital’s approach to pediatric end-of-life care American Hospital Association; 2/8/25 When parents have a child with a serious illness, all they want is for their child to get well. If that no longer becomes a possibility, often all they want is to bring their child home. Most — around 70% — of pediatric deaths related to illness occur in the hospital, but the Kentucky Children’s Health Pediatric Advanced Care Team offers some families the chance to transport their child home using life-sustaining technology. That’s not an easy feat; these patients are medically fragile, and the outcome can be unpredictable. A team made up of hospital administrators, hospice providers, coroner and the transportation team comes up with a plan. The child’s parents complete an informed consent procedure, recognizing that their child may not survive the journey home. The transportation team tries to ensure that the journey is as comfortable as possible, as well as planning what to do if the child’s condition deteriorates on the journey. If that happens, he or she will be supported as they pass without resuscitation efforts.
Flat MaineCare rates force home health company to discharge pediatric patients
02/11/25 at 03:00 AMFlat MaineCare rates force home health company to discharge pediatric patients NBC News Center Maine, Lewiston, ME; by Vivien Leigh; 2/7/25 A home health company is lobbying state health officials to adopt a funding plan to ensure kids with severe health needs don't fall through the cracks. Andwell Health Partners provides nursing, therapy, and services to nearly 900 children across six counties. The majority of those kids are on MaineCare, the state's version of Medicaid. But the company said it has no choice but to discharge patients because of a lack of increase in reimbursement rates. ... Lindsay Hammes, spokesperson with Maine DHHS, released a statement to News Center Maine. "... MaineCare has been working with providers and partners, including Andwell, on a palliative care model that would, among other populations, cover children with medical complexity. We are in the rate-setting stage for this model."
[Germany] Green hospice snails: Dresden bakeries support incurable children
02/11/25 at 03:00 AM[Germany] Green hospice snails: Dresden bakeries support incurable children Archynewsy; 1/10/25 In Dresden, Germany, a heartwarming campaign is uniting bakeries and communities to support families facing the challenges of life-limiting illnesses in their children. Every February 10th, known as the "Day of Work for the Hospice for Children," participating bakeries offer delectable "green" treats, with a portion of their proceeds contributing to the invaluable work done by local children’s hospices. ... This campaign transcends mere fundraising; it acts as a powerful platform to shed light on the often-overlooked needs of families navigating the complex journey of caring for a child with a life-limiting illness.
A broader end-of-life-view: The need for hospice and palliative care extends beyond the elderly, as the patient population at Transitions LifeCare suggests
02/10/25 at 03:00 AMA broader end-of-life-view: The need for hospice and palliative care extends beyond the elderly, as the patient population at Transitions LifeCare suggestsTriangle Business Journal, Raleigh, NC; by Connie Gentry; 2/7/25 Although the likelihood of developing cancer is highest for anyone over age 65, the American Cancer Society’s annual report on cancer statistics, released last month, noted increasing incidents of many cancer types among younger adults and women. ... But positive outcomes were also reported: The cancer mortality rate in the U.S. declined by 34 percent from 1991 to 2022 and, since 1970, cancer mortality in children 14 years and younger has declined by 70 percent and among adolescents ages 15 to 19 years it has dropped by 63 percent. ... Although the majority of their hospice patients are over the age of 75, Transitions LifeCare is seeing an increase in younger patients. Last year, roughly 9 percent of their hospice patients were under age 65, almost evenly divided between women and men.
Volunteer and her 3 dogs provide joy through Hospice of the Valley's pet therapy program
02/10/25 at 03:00 AMVolunteer and her 3 dogs provide joy through Hospice of the Valley's pet therapy program AZCentral; by Lin Sue Flood, Hospice of the Valley; 2/7/25 Marian Wallace loves dogs and loves volunteering, so she put the two together to provide joy to others. [Her] three adorable Labradors — Mattie, Harper and Richey — are the newest members of Hospice of the Valley’s pet therapy program. They visit youngsters at Ryan House, which provides respite support to families with medically fragile children. ... Marian joined Hospice of the Valley’s pet therapy program was about 10 years ago. A friend who had a therapy pet inspired her to rescue and train dogs. She began visiting hospice patients with her first two labs, Shiloh and Amy. ... “It’s that child-animal interaction that I find so incredible,” she said. ... One of the most endearing qualities she sees in all of her Labs is how intuitive they are, tapping into the moods and emotions of children to comfort them. ... Editor's note: Ensuring pet therapy training and certification is crucial, for both the pet and the owner. Click here for an extensive national list of Pet Therapy Organizations. If you have--or plan to provide--a pet therapy program, be sure that insurance is provided (by the pet therapy organization and/or by you) in case an incident occurs.