BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…
BACKGROUND: The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models…
BACKGROUND: Reports of acceptability of psychosocial screening are limited, and the utility of screening in identifying risk factors for health-related quality of life (HRQL) of children with cancer has not been established. This study aimed to…
OBJECTIVES: A systematic review was conducted to (1) investigate couple functioning after a pediatric cancer diagnosis and (2) examine theoretical and methodological tendencies and issues in this literature. METHODS: Searches of Web of Science,…
Children diagnosed with diffuse intrinsic pontine glioma (DIPG) face a dismal prognosis, with severe neurologic deterioration and inevitable death at a median of 9 months from diagnosis. Steroids are widely prescribed as supportive or palliative…
To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their…
BACKGROUND: Monitoring long-term health of teenage cancer survivors is dependent on successful transition from pediatric to adult long-term follow-up (LTFU) care. This study identified factors associated with self-management skills (SMSs), an…
PURPOSE: Currently, 80 % of children diagnosed with cancer will be cured. However, many of these survivors go on to develop long-term health problems or late effects related to their previous cancer and therapy and require varying degrees of lifelong…
CONTEXT: Primary palliative care (PPC) skills are useful in a wide variety of medical and surgical specialties, and the expectations of PPC skill training are unknown across graduate medical education. OBJECTIVES: We characterized the variation and…
Although grief is a normal response to loss, the death of a child is believed to be one of the most difficult losses a person can endure, and bereaved parents are considered to be an "at-risk" group. Even though most deaths of children in the United…
OBJECTIVE: This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services,…
BACKGROUND: The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction. OBJECTIVE:…
OBJECTIVE: To review the literature on moral distress experienced by nursing and medical professionals within neonatal intensive care units (NICUs) and paediatric intensive care units (PICUs). DESIGN: Pubmed, EBSCO (Academic Search Complete, CINAHL…
INTRODUCTION: There is increased awareness of paediatric palliative care in Malaysia, but no local published data on home care services. We aimed to describe the paediatric experience at Hospis Malaysia, a community-based palliative care provider in…
BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the…
BACKGROUND: Synthesis of multiple randomized controlled trials (RCTs) in a systematic review can summarize the effects of individual outcomes and provide numerical answers about the effectiveness of interventions. Filtering of searches is time…
BACKGROUND: Childhood cancers evoke various emotional reactions in caregivers which can impair their well-being and roles. Little is known about caregiving and which cancer-associated factors are related to caregiver's depression in…
BACKGROUND: Cancers in children are yet to be recognised as an important cause of childhood morbidity and mortality in developing countries where more than 70% of the world annual cases occur. Despite the limited resources and whatever the projected…
BACKGROUND: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is…
The article discusses some of the features of comparativeness effectiveness trials in relation to patient care. Some of the successes as well as failures of various attempts to integrate randomized comparative effectiveness research with patient care…
Background: Giving care to a patient at the end of life can be a challenging and confronting experience. The responsibilities of care giving may include executing complex physical and mental tasks, financial planning, patient care decision making,…
BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol…
The survival of newborn babies born with various problems has improved with the access to life sustaining technologies. Despite this, death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies suffering from life limiting…
Although the past decade has brought global reductions in maternal, infant and child mortality, many low-resource settings have failed to make significant gains relative to their high-income counterparts. In Ghana, nearly 50% of under-five mortality…
PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been…
INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider…
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…
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…
AIM: To investigate clinical course and mortality-associated factors in children with Down syndrome (DS) managed in a medical paediatric intensive care unit. METHODS: A single-centre, retrospective study conducted between 2001 and 2010 in DS children…
PURPOSE: Dravet syndrome (DS), also known as severe myoclonic epilepsy of infancy (SMEI), is a rare genetic disorder that results in severe childhood-onset epilepsy. Children with DS initially present with seizures in the first year of life that are…
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the…
Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses…
A career in pediatrics can bring great joy and satisfaction. It can also be challenging and lead some providers to manifest burnout and depression. A curriculum designed to help pediatric health providers acquire resilience and adaptive skills may be…
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be…
