Browse Items (73 total)

The charity Together for Short Lives has launched a campaign to encourage nurses to consider a role in children's palliative care in the voluntary sector, to prevent any further reduction in services for this already vulnerable group.

OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness…

OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations…

Twenty children with cri-du-chat syndrome were assessed on the Vineland Adaptive Behavioural Scales. Strengths within rather than between the adaptive domains were identified with posthoc analyses revealing the main differences to lie within the…

Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare…

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…

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…

Despite increasing cure rates, cancer is a leading cause of non-accidental death in childhood. Models of psychosocial care in pediatric cancer may therefore need to address bereavement planning for a 'minority group' of parents (approximately 25%)…

OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the…

Changes in health care service delivery have resulted in the transfer of care from formal spaces such as hospitals and institutions towards informal settings such as home. Due to the degree of this transfer, it is increasingly important for…

Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived…

Despite the fact that chronic abdominal pain is a common complaint in children and adolescents, the complexity of this condition only recently has begun to be understood. This article summarizes new advances in the diagnosis, conceptualization, and…

Despite the established evidence for threat-related attention bias in anxiety, the mechanisms underlying this bias remain unclear. One important unresolved question is whether disorder-congruent threats capture attention to a greater extent than do…

Recent studies have shown that rates of depression and anxiety symptoms are elevated among individuals with autism spectrum disorders (ASDs) of various ages and IQs and that depression/anxiety symptoms are associated with higher IQ and fewer ASD…

OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected…

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…

BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these…

The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a…

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies,…

OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.…

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…

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and…

Withdrawal of life-sustaining support on the neonatal unit presents a set of unique challenges specific in this age group of patients. This article aims to provide an overview of the key factors that should be considered during this process. It…

A child on life support with no hope of recovery is the worst nightmare for parents and for paediatricians. Unfortunately, some children have illnesses or injuries that are not compatible with life. Being in a vegetative state with no meaningful…

OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous…

Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with…

RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures…

Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values.…

People who have lost a travel one often try to make some meaning of their loss. The authors explore the ways people try to make meaning of loss, the factors that predict difficulty in making meaning, and the emotional outcomes of finding meaning.…

A prospective controlled study with repeated measures before and after surgery examined the medical, surgical, and health outcomes of gastrostomy for children with disabilities at a tertiary paediatric referral centre in the North Thames area, UK.…

This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases…

Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective(s): To prioritize quality measures among parents…
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