Browse Items · Pediatric Palliative Care Library

Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes…

"We were made to mourn": A meta-ethnographic synthesis of living through the loss of a child to cancer for Latinx families in the United States

Latinx children with cancer in the United States (US) are more than 50% more likely to die of their cancer compared to non-Latinx White children. Despite this disproportionate likelihood, little is known about the grief experiences of Latinx…

Tags: 2024, 2025 SE1 - Oncology, Anthropology Cultural, Bereavement, Buzelli P, Child, Death studies, Family/psychology/ethnology, Female, Grief, Hispanic or Latino/psychology, Humans, Male, Neoplasms/ethnology/psychology, Snaman J, Social Support, United States

The Role of Midwives in US Perinatal Palliative Care: A Scoping Review

Abstract Introduction: Perinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life-limiting fetal condition who continue their pregnancy. The provision of PPC is within…

"Who Has the Relationship?": Caring for a Shared Population of Children with Medical Complexity

Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two…

Impact of disability-based discrimination in healthcare on parents of children with medical complexity.

AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents…

Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objective(s): We asked outpatient PPC (OPPC) program leaders in the United States about clinic…

Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe…

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective(s): To examine sources of and changes in stress among…

Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J

First Nations Peoples' perceptions, knowledge and beliefs regarding stillbirth prevention and bereavement practices: A mixed methods systematic review

Background: First Nations Peoples endure disproportionate rates of stillbirth compared with non-First Nations Peoples. Previous interventions have aimed at reducing stillbirth in First Nations Peoples and providing better bereavement care without…

Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy

Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve…

The Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of psychometric properties

Context: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the…

Simulation, Storytelling, and Pediatric End-of-Life Care: A Continuing Professional Development Approach for Nurse Residents

Background: Providing end-of-life (EOL) care to pediatric patients and their families is challenging. Newly licensed nurses, especially those working with the hematology/oncology population, have little to no experience providing the specialized care…

Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*

OBJECTIVES: To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care. DESIGN: Cross-sectional survey of United States National Residency Matching Program pediatric fellows training…

Short Term Coping-Behaviors and Postpartum Health in a Population-Based Study of Women with a Live Birth, Stillbirth, or Neonatal Death

Objective: Responding to the National Institutes of Health Working Group's call for research on the psychological impact of stillbirth, we compared coping-related behaviors by outcome of an index birth (surviving live birth or perinatal loss -…

Not Just Small Adults: The Birth and Early Years of a Pediatric Hospice Program

Outcomes: 1. Participants will be able to describe the need for dedicated pediatric hospice support as well as the differences in care needs of children versus adults. 2. Participants will be able to identify at least three tangible actions to…

Effect of Sustaining a Perinatal Loss: Mothers’ Mental Health and Marital Satisfaction

Abstract The occurrence of perinatal losses is an unfortunate, yet common degeneracy that implements perturbing taxation on the mental, emotional, and marital health of mothers considering the grief they impose. This study is a quantitative venture…

Challenges and coping styles of fathers as primary medical caretakers: a multicultural qualitative study.

Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary…

Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers

Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada,…

Gender Differences in Depressive Symptoms Following Child Death in Later

Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated…

Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning with Competencies

Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics…

Sleep quality moderates the association between family bereavement and heart rate variability

Two separate bodies of literature point to the link between family bereavement and cardiovascular health and between sleep quality and cardiovascular outcomes. However, less is known about the joint influence of family bereavement and sleep quality…

Incremental cost analysis of pediatric hospice care in rural and urban Appalachia

Purpose: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act)…

Tags: 2023, Aged, Appalachian Region, August List 2048, Child, Costs And Cost Analysis, Cozad MJ, Hospice Care, Hospices, Humans, Keim-Malpass J, Lindley LC, Medicare, Patient Protection and Affordable Care Act, Svynarenko R, The Journal of Rural Health, United States

Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child

Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…

Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…

"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions

BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…

Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study

Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has…

Tags: 2023, Child, Cozad MJ, Death, Hinds PS, Hospice Care, Humans, July List 2023, Keim-Malpass J, Lindley LC, Mack JW, Palliative Care, Patient Protection and Affordable Care Act, Svynarenko R, Terminal Care, United States, Western Journal of Nursing Research

The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment

Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as…

Shades of Care: Understanding the Needs of Racially and Ethnically Diverse Paediatric Patients, their Families, and Health Care Providers in North America

While race and ethnicity have been acknowledged as determinants of health, there remain gaps regarding their effects on experiences of paediatric care. This scoping review examines empirical literature regarding the state and experience of paediatric…

Tags: 2023, April List 2023, Child, Communication, Health Personnel, Humans, Journal Of Child Health Care, Ladha R, Neiterman E, North America, Palliative Care, United States

Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations

The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics…

Tags: 2023, Advance Directives, Child, Communication, Docherty S, Grier K, Human, Journal of Hospice and Palliative Care, Koch A, March List 2023, Palliative Care, Parents, Patient Care Planning, Quality Of Life, United States

Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients

Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for…

Location of death and hospice use in children with cancer varies by type of health insurance

BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a…

Pediatric Palliative Care through the Eyes of Healthcare Professionals, Parents and Communities: A Narrative Review

BACKGROUND AND OBJECTIVE: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care.…

National Survey of Sibling Support Services in Children's Hospitals

Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support…

Mortality During Readmission Among Children in United States Children's Hospitals

OBJECTIVE: To identify demographic, clinical, and hospital factors associated with mortality on readmission within 180 days following an inpatient hospitalization. STUDY DESIGN: We conducted a retrospective cohort study including 33 US children's…

Tags: 2022, children’s hospitals, Complex Chronic Conditions, Disparities, Duggan CP, Journal of Pediatrics, May 2022 List, Michelson KA, Monuteaux MC, Mortality, Neuman MI, Pediatric, readmissions, Rees CA, United States

An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial

BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care…

Tags: 2022, Advance Care Planning, Advance Directives, April 2022 List, Baker JN, Confidence Intervals, End Of Life, Friebert S, Jiang J, Lyon ME, Needle J, Odds Ratio, Pediatrics, United States, Wang J

A Narrative Review of Pediatric Respite Care Initiatives in the United States

Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The…

Tags: 2022, April 2022 List, Child, Ferragamo T, Hospices, Journal of Hospice and Palliative Nursing, Lindley LC, Medicaid, Pituch KJ, Respite Care, Simon N, Sorkin T, United States, Weaver MS

Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals

OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…

Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013

PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while…

Tags: 2021, Child, concurrent hospice care, Cozad MJ, End-of-life Care, Hospice Care, Hospices, Hospitalization, January 2022 List, Journal for Specialists in Pediatric Nursing, Keim-Malpass J, Lindley LC, Mack JW, Medicaid, Patient Protection and Affordable Care Act, Pediatric, Svynarenko R, United States

Mortality in parents after the death of a child

The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was…

Palliative care allocation among critically ill children is highly variable in the United States

Learning Objectives: Palliative Care (PC) is a scarce resource. Little is known about its allocation among critically ill children. Previously proposed criteria may help identify children who may benefit from PC. Method(s): This is a retrospective…

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