Primary palliative care education and mentoring strengthens frontline clinicians' confidence and competence in pediatric palliative care, and potentially mitigates their moral distress. The project aims were to improve the knowledge, attitudes, and…
BackgroundThe 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.ObjectiveThe purpose of this study was…
Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of…
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and…
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in…
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the…
* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a…
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy…
This article reviews the unique challenges of pediatric palliative medicine. These challenges originate from the specific epidemiology of pediatric diseases for which palliative care is indicated and the necessity to provide child-focused,…
Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's…
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was…
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We…
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We…
OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor…
BACKGROUND: Adolescents living with incurable cancer require ongoing support to process grief, emotions, and information as disease progresses including treatment options (phase 1 clinical trials and/or hospice/palliative care). Little is known about…
BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES:…
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with…
Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can…
BACKGROUND: Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model.…
The death of an infant in the neonatal intensive care unit (NICU) is a profound and unexpected loss for parents that results in a complex process of coping with bereavement. A descriptive qualitative approach was used to explore parent bereavement…
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the…
Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.…
IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…
Objectives To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. Study design Participants 8-24 years-old and their parents were enrolled…
BACKGROUND: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely.…
PURPOSE/OBJECTIVES: To describe contextual features of the experience of adolescents with cancer in the United States; to relate these features to a different theoretical perspective, the Shifting Perspectives Model of Chronic Illness; and to derive…
OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at…
Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based…
Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare…
Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients…
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…
Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based…
BACKGROUND: End-of-life care (EOLC) discussions and treatment-related decisions, including phase 1 trial enrollment, in patients with incurable disease are complex and can influence the quality of EOLC received. The current study was conducted in…
