Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…
events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense, and those grieving such a loss have unique needs. One of the things that nurses can do to assist families in these situations…
The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…
In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert…
OBJECTIVE: Measurement of pain interference in children is challenged by a lack of validated measures with a parent proxy report. This study investigated the psychometric properties of the Pain Interference Index (PII), a six-item questionnaire…
BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been…
OBJECTIVE: To describe development of mobility and self-care capabilities in young children (aged 1-4 years) with cerebral palsy, and to examine whether the development of mobility and self-care capabilities differs by cerebral palsy severity in…
Purpose Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type.…
Differences in perspective between physicians caring for children with trisomy 18 may be confusing and stressful for parents. The hypothesis of this study was that neonatologists and pediatric pulmonologists differ in their opinions regarding…
Few studies have fully explored the problem of communication barriers in pediatric palliative care, particularly the detrimental effects of poor interaction between staff and families on children's health and well-being. A literature review was…
Rosengren, Miller, Gutiérrez, Chow, Schein, and Anderson have written a powerful and important monograph focused on the fascinating topic of children's understanding of death. Combining multiple methods, converging data sources, and diverse…
OBJECTIVE: Pain medicine still lacks mechanism-specific biomarkers to guide diagnosis and treatment, and defective top-down modulation is an important factor in the pathophysiology of chronic pain conditions. Using modern analytical tools and…
This article explores the grief process of parents following the death of a child due to a life-limiting illness, putting particular focus on dyadic coping. Participants included 46 married parents (23 couples). A mixed methods design was used with…
It was only after James P. Lovette's death, in 2006, that I discovered that the twenty-four-year-old colleague and friend with whom I had spent so many afternoons debating issues in organ transplantation had been the first successful child heart…
Background Objective was to determine whether prophylactic low level laser therapy (LLLT) reduces the risk of severe mucositis as compared to placebo or no therapy. Methods MEDLINE, EMBASE, and Cochrane Central Register of Controlled Trials were…
BACKGROUND:: This is the first study to use meta-analysis as a scientific technique to provide an integrated analysis of the effectiveness of music intervention in cancer patients. OBJECTIVES:: The purpose of this study was, using the meta-analysis…
High-quality palliative care is the standard for children with life-threatening illness, especially when a cure is not possible. This review outlines a model for clinical practice that integrates clinical, psychosocial, and ethical concerns at the…
BACKGROUND: The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might…
OBJECTIVE: To determine the epidemiology of death in PICUs at 5 geographically diverse teaching hospitals across the United States. DESIGN: Prospective case series. SETTING: Five U.S. teaching hospitals. SUBJECTS: We concurrently identified 192…
Research has demonstrated the significant symptom burden present at the end of life of terminally ill children. Medicine has always viewed the relief of pain and suffering as a fundamental human right and a moral and ethical obligation. At the end of…
OBJECTIVE: This study aimed to identify and prioritise neonatal intensive care nursing research topics across Europe using an e-Delphi technique. DESIGN: An e-Delphi technique with three questionnaire rounds was performed. Qualitative responses of…
In February 2014 the Belgian parliament voted to extend the existing euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering 'constant and…
Objective: Social support has been linked to beneficial effects on health directly (main effect) and as a buffer to stress. Most research, however, has examined these relationships using global and retrospective assessments of health and stress,…
BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect…
One in seven US households cannot reliably afford food. Food budgets are more frequently exhausted at the end of a month than at other points in time. We postulated that this monthly pattern influenced health outcomes, such as risk for hypoglycemia…
This article presents an original study commissioned by the UK charity, Together for Short Lives which explored children and young people up to 25years of age with life-threatening/limiting conditions and their families. Using Appreciative Inquiry…
BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care…
Background The bedside vigil maintained by parents of critically ill children is fuelled by faith, hope and love. While faith and love are generally accepted without question, maintaining hope in the face of almost certain loss can be seen as…
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may…
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…
Child life specialists provide family-centered, developmentally supportive care for infants in the NICU. However, there is limited research concerning this role. Using an online survey, this study explores child life specialists’ responsibilities in…
