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…
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career…
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer…
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…
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study…
PURPOSE: To compare IRB processes in 68 U.S. hospitals for the same multicenter study. DESIGN: Survey of IRB processes in 68 U.S. hospitals during 2001-2002. METHODS: Requirements of IRB submission including type and duration of review and…
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile,…
OBJECTIVE: To assess health insurance status and health care access of young adults with disabilities attributable to a chronic condition. DESIGN AND SETTING: We analyzed data from the National Health Interview Survey from 1999 to 2002. We present…
PURPOSE: To assess the influence of demographic variables and health risk status on adolescents' preferences and actual receipt of services regarding provider gender, sharing a physician with parents, and private examinations. METHODS: Data from…
This article has described issues associated with transition planning for youth with CHD. A number of approaches have been described to address the needs of this growing number of youth with CHD. Transition to adulthood has been and will continue to…
OBJECTIVES: Communication about end-of-life decisions is crucial. Although patients with metastatic spinal cord compression (MSCC) have a median survival time of 3 to 6 months, few data are available concerning the presence of advance directives and…
PURPOSE OF REVIEW: To review the definition of advanced directive, understand the implications for the patient, family and healthcare team, and address the obstacles involved in the implementation., RECENT FINDINGS: Advanced directives propose a…
This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family…
Insufficient training of health professionals has often been cited as a major barrier to improving the system of care for dying patients and for the bereaved. Although specific problems have been identified for physicians and nurses, the problems of…
OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by…
Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional…
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…
The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years.…
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…
BACKGROUND: Medical oncologists often must deliver bad news. The authors were interested in the extent of formal training in delivering bad news in hematology/oncology fellowships in the United States. METHODS: An e-mail survey was sent to all…
Introduction: Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and…
The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric…
OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical…
BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this…
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…
Developmental changes in children's acquisition of death concepts and in their emotional reactions are reviewed. Moderating variables that may affect the nature of grieving processes after parental or sibling death are discussed, including…
BACKGROUND: Inflammatory bowel disease (IBD) is an ideal disease for investigating adolescent adjustment to chronic illness, given its embarrassing, socially limiting, appearance-changing symptoms and adolescent onset. OBJECTIVE: To compare…
Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this…
More than 3000 adolescents in the United States die annually from the effects of chronic illness. Providing appropriate end-of-life care for these patients is particularly challenging because of several developmental, ethical, and legal…
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…
OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU…
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…
