The American Board of Pediatrics first recognized Pediatric Critical Care Medicine as a separate specialty in 1987. Since that time, the number of pediatric intensivists, pediatric intensive care units (PICUs), and PICU beds has continued to grow.…
Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such…
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the…
Few studies have yet examined subgroups among children (aged 8-18) confronted with the death of a close loved one, characterized by different profiles of symptoms of prolonged grief disorder (PGD) and symptoms of bereavement-related posttraumatic…
There are more migrants, refugees, and immigrants adrift in the world today than at any time in the recent past. Doctors and hospitals must care for people from many different cultures, countries, and religious backgrounds. We sometimes find our…
Parents have a significant role in the management of a child's chronic condition. Parents are often the only consistent individuals managing a child's health across his or her childhood and adolescence (e.g., present for all appointments and medical…
BACKGROUND: Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth…
OBJECTIVE: To compare the rates of shared decision making (SDM) reported by parents of children with medical complexity (CMC) with the rates of SDM reported by parents of noncomplex children with special health care needs (CSHCN). STUDY DESIGN: We…
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n =…
The objectives of this study were to examine (1) the extent to which hospice palliative care volunteers are involved in program and patient/family advocacy, (2) volunteers' willingness to engage in program and patient/family advocacy, and (3)…
Abstract. Background: End-of-life care has become the focus of most health care organizations due to the increasing number of patients who are living longer with chronic and terminal diseases. Today, patients are more involved in the discussion…
HIV-positive children in sub-Saharan Africa have numerous challenges to overcome. These challenges increase psychosocial stress as well as symptom burden including fatigue, weight loss, pain, and mental changes. The symptoms may persist even after…
When a child has a terminal diagnosis, the intervention of legacy building is offered as a standard of care in all of the 77 teaching children's hospitals in the United States. Legacy building is a group of activities designed to create tangible…
This study was an exploratory inquiry into the role of music therapy for pre-bereaved informal hospice caregivers. Pre-bereavement has been an area of increased scholarly and clinical focus across multiple healthcare fields over the past decade, and…
A personal narrative is presented which explores the author's experience as Master of Social Work (MSW) at the Division of Comfort and Palliative Care at Children's Hospital in Los Angeles, California.
It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss…
By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6.…
Background: Non-medical prescribing is well established within the British health service, with increasing numbers of nurses practicing within children's hospices. Aim: To identify the context of non-medical prescribing in children's hospices in the…
Objective: to understand how mothers experienced the experience of their babies' mourning. Methods: this is a qualitative study, conducted with nine mothers who experienced the loss of a child under one year. Semi-structured interviews were…
BACKGROUND: The survival rate for infants born with life-threatening problems has improved greatly over the last few decades. Nevertheless, infants still die in neonatal intensive care units (NICUs) every day. Despite existing standards of care, some…
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are…
Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted…
The sudden, unexpected, and unexplained death of a healthy infant in its first year of life (nominally 2 to12 months) is surely one of the most tragic human experiences a parent can undergo. The shock of loss is commonly accompanied by extreme…
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
AIM: The ability to communicate serious news to patients and families in a caring and compassionate way is a critical skill for physicians. This study explores the impact of a novel communication skills workshop that included bereaved parents in role…
Rationale: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their…
Context. - The regional resource teams of pediatric palliative care, like any adult mobile palliative care team in France, have to realize an annual report including several indicators that are often imposed by the regional public health authorities.…
OBJECTIVE: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses' attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study…
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases…
This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We…
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev…
BACKGROUND: Perinatal losses are traumatic events in the lives of families and can have serious long-term consequences for the psychological health of parents and any subsequent children. DESIGN: A prospective follow-up study. METHODS: We recruited,…
BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be…
