A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario…
Long-term gastrostomy is a predictable intervention to ameliorate the effects of feeding and swallowing difficulties among children with severe spastic cerebral palsy. The evidence evaluating the efficacy and implications of the available gastrostomy…
The Grief Experience Inventory (GEI) and the MMPI were used to assess bereavement reactions in 102 newly bereaved individuals; 107 controls were also assessed. Intensities of bereavement reactions were compared across three types of deaths…
Recently, patient controlled analgesia (PCA) has gained prominence in the treatment of pain for children suffering from vaso-occlusive crisis associated with sickle cell disease. Because there are several different regimens that can be used for PCA,…
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.
Background: Glutaric aciduria type I (GA-I) is an inherited metabolic disease due to deficiency of glutaryl-CoA dehydrogenase (GCDH). Cognitive functions are generally thought to be spared, but have not yet been studied in detail. Methods: Thirty…
Background: Increasing numbers of young adults with life-limiting conditions are living into adulthood and consequently making the transition from children's to adult services. A poorly planned transition is associated with adverse outcomes such as…
Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In…
Background Psychological tests can be useful to record adaptive and maladaptive behaviours of children with intellectual disability. The objective of this study was to describe the adaptive and maladaptive behaviour of children and adolescents with…
PURPOSE: To describe the proportion of children with an index hospitalization in 2014 who had established long-term invasive ventilator dependence (LTVD), and determine regional variation in hospital length of stay, charges, and readmissions. DESIGN…
OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who…
OBJECTIVE: Escitalopram is a selective serotonin reuptake inhibitor antidepressant indicated for use in adults. This trial examined the efficacy and safety of escitalopram in pediatric depression. METHOD: Patients (6-17 years old) with major…
OBJECTIVE: To investigate cardiac function in patients with mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS) and clarify the clinical features of cardiomyopathy in MELAS. PATIENTS: 11 consecutive patients with MELAS…
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges…
For families facing end-of-life decisions for their critically ill children, compassionate extubation at home is a valuable service that pediatric intensivists can provide. Compassionate extubation at home is resource intensive and can be…
PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the…
BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found…
BACKGROUND:: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. AIM:: To explore the process…
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life.…
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care…
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations…
The aim was to compare results of studies performed in different settings worldwide and identify common therapeutic areas to allow for focused interventions, because off-label drug use can be a measure of the lack of knowledge concerning paediatric…
The main objective of this review was to provide a quantitative and methodologically sound evaluation of existing treatments for bereavement and grief reactions in children and adolescents. Two meta-analyses were conducted: 1 on controlled studies…
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of…
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges…
This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.
PURPOSE: To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the…
Over the past few decades, great progress has been made in the survival rates of childhood cancer. As survival rates have improved, there has been an increased focus on supportive care. Nutrition is a supportive-care modality that has been associated…
Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The…
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study…
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…
We are presenting an integrative paradigm of care. We will review the basis for its evolution from prior series and parallel models. In this paradigm, healing and palliation (when indicated) are introduced in parallel with curative measures as soon…
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…
The prevalence of Pediatric Palliative Care (PPC) programs for children significantly increased over the past two decades. In more recent years, however, evidence suggests a plateau in program expansion and service reach, despite the current reality…
A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was…
Background/Objectives: Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to…
OBJECTIVE: To analyze prospectively the impact of age at diagnosis in childhood idiopathic thrombocytopenic purpura (ITP). STUDY DESIGN: International registry from June 1997 to May 2001, with analysis of data from baseline and 6-month-follow-up…
Critically ill children are treated with opioid medication in an attempt to decrease stress and alleviate pain during prolonged pediatric intensive care. This treatment plan places children at risk for opioid dependency. Once dependent, children need…
