Over 11,000 adolescents and young adults (AYA), ages 15-34, die yearly from cancer and other life-threatening conditions. In order provide comprehensive end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close…
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…
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…
Abstract
Aim With continuing advancements in both antenatal and neonatal care, perinatal palliative continues to pose significant challenge. A number of professional bodies have published best practice guidance on the delivery of palliative care in…
This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family…
Abstract
Background Extensive changes to legislation in the last 15 years have led to a rapid expansion of the role of non-medical prescribers (NMPs). There appears to be a paucity of information evaluating the role that NMPs can play in paediatric…
Objective: The purpose of this project was to design, implement, and evaluate a safe sleep program for expectant mothers and the families of infants discharged from our hospital's neonatal intensive care unit (NICU). It was prompted by the…
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…
Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes…
Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or…
BACKGROUND:
Palliative care guidelines recommend plain radiographs to assess constipation based on the presumption that visible fecal shadowing represents stool retention. Despite this, using plain radiographs in this way is not well…
AimThis cross-sectional investigation aimed to assess the value of non-invasive measures of temporal respiratory-swallow coupling in individuals with ataxic swallowing. MethodTwenty participants (11 males, 9 females; range 9-21y) with ataxia…
BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.
BACKGROUND: Organic acidurias (OADs) and urea cycle disorders (UCDs) are inborn metabolic disorders with a risk for acute and chronic metabolic decompensation resulting in impairments of the central nervous system and other organ systems. So far,…
Objectives
Understand reasons a bereaved parent chooses to
return to the hospital for a memorial service.
Identify elements of a hospital memorial service
that parents identify as most beneficial.
Original Research Background. 77% of…
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening…
The majority of children whose brain tumors are resistant to treatment, lose their ability to speak and write due to progressive impairment and/or fatigue. Compromised communication can be emotionally devastating for the whole family, as…
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this…
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…
Drawing on fieldwork in a neonatal intensive care unit (NICU) in Chiang Mai during 2010 and 2012, I examine neonatal care as a contingent entanglement of technological and ethical relationships with vulnerable others. Along the continuum of universal…
BACKGROUND:
More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending…
BACKGROUND: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. AIM: To…
OBJECTIVES/HYPOTHESIS:
To assess the longitudinal risk of death following tracheostomy in the pediatric age group.
STUDY DESIGN:
Retrospective cohort study.
METHODS:
Hospital records of 513 children (≤18 years) at a tertiary care children's hospital…
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…
Children with medical complexity (CMC) represent less than 1 % of all US children, but account for more than 30 % of total pediatric healthcare costs. They are a rapidly growing population of children with the highest levels of medical fragility and…
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…
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.
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…
Abstract
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…
CONTEXT:
Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE:
To describe the perspectives of children and adolescents with…
The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’…
CONTEXT:
Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in…
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care…
BACKGROUND:
Pediatrics residents treat patients who are particularly vulnerable and they care for many patients in palliative situations. The purpose of this study was to build a typology detailing the representations of pediatrics and oncology…
Despite greatly improved survival in pediatric patients with end-stage heart failure through the use of ventricular assist devices (VADs), heart failure ultimately remains a life-threatening disease with a significant symptom burden. With increased…
The use of compassionate extubation (CE) to alleviate suffering by terminating mechanical ventilation and withdrawing the endotracheal tube requires professional adherence and efficiency. The Hospice Palliative Care Act, amended on…
Objectives
•Describe steps to take before starting the procedure to ensure comfort for the patient and family.
•Identify likely symptoms during and after the extubation and their management.
•Describe ways to support family and staff during and after…
Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and…
At least 20 million children would benefit from Pediatric Palliative Care (PPC) annually, and 8 million children would need specialized PPC services. In the USA alone, more than 42,000 children 0-19 years died in 2013, fifty-five percent of them…
