Browse Items (523 total)

Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is…

Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the…

Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying…

Background The literature reviews show that taking care of dying newborns for a nurse is associated with stress and anxiety, and nurses will be faced with many challenges, the present study aimed to explain the spiritual challenges experienced by…

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the…

OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…

OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare.…

Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.

Nurses are looking beyond parents to provide bereavement support for the wider family

Nurse consultant Michael Tatterton’s research revealed that when a child with a life-limiting condition dies, the grandparents’ ‘unique footprint of grief’ is…

Background: Providing appropriate psychosocial care for parents experiencing the loss of a newborn is crucial. Currently, a number of practices are recommended in perinatal and neonatal palliative care guidelines that are designed to help families to…

Introduction Of the 74% of UK childhood deaths that occur in hospital, an increasing number-up to 65%-occur in PICU. There is little information about the impact of this on those who provide minute-to minute care of the children and their families,…

Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why…

BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased…

OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…

Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…

Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35…

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has…

BACKGROUND: Rhabdomyosarcomas (RMS) of the nasolabial fold can be difficult to manage surgically due to functional and cosmetic limitations. Therefore, brachytherapy (BT) has been proposed to improve local control while limiting the volume of…

We report the second family with AIMP1 deficiency, due to a homozygous truncating AIMP1 (g.107248613 C > T) mutation. This female showed early-onset developmental arrest, intractable epileptic spasms, microcephaly, and a rapid clinical course leading…

BACKGROUND: Children with acute lymphoblastic leukemia (ALL) undergo multiple lumbar punctures (LPs) during their course of treatment for diagnostic and therapeutic purposes. LP is a stressful and painful procedure, affecting the quality of life of…

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…

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…

OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…

BACKGROUND: Late-onset sepsis (LOS) in very low birth weight (VLBW) infants is associated with significant morbidity and mortality. The ability to predict mortality in infants with LOS based on clinical and laboratory factors at presentation of…

AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…

AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…

OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS:…

The authors have undertaken a study to explore the views in non-Western cultures about ending the lives of newborns with genetic defects. This study consists of including active euthanasia alongside withdrawal and withholding of treatment as…

CONTEXT: Approximately 1 in 10 infants require neonatal intensive care unit (NICU) hospitalization, which causes parental stress. Palliative care (PC) provides an opportunity to alleviate suffering and stress. OBJECTIVES: This study examines the…

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on…

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…
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