Literature Review

Special 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.

For 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.

Ambiguous 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.

[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.

Iowa 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.

Port 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.

Children 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.

How 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.

Children'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. ...

Trends 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.  

A 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.

Influence 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.

North 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.