OBJECTIVE: Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL…
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their…
BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical…
BACKGROUND: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. METHODS: The study purpose was to develop and test an instrument to measure…
It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little…
In children with severe generalized recessive dystrophic epidermolysis bullosa (RDEB), esophageal scarring leads to esophageal strictures with dysphagia, followed by malnutrition and delayed development. We describe a two-step multidisciplinary…
BACKGROUND: Models of palliative care need to address the unmet needs of children, young people and families. OBJECTIVE: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of…
CONTEXT: Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life (QoL) and end-of-life care needs. OBJECTIVES: We evaluated outcomes and symptoms in children with solid tumors and compared patterns of…
BACKGROUND: The loss of a child is associated with an increased risk for developing psychological problems. However, studies investigating the impact of parents' faith and hope for a cure during the palliative phase on long-term parental…
This study was aimed at extending the use of assistive technology (i.e., photocells, interface and personal computer) to support choice strategies by three girls with Rett syndrome and severe to profound developmental disabilities. A second purpose…
OBJECTIVE: To describe a single-institution pilot study regarding prevalence and risk factors for delirium in critically ill children. DESIGN: A prospective observational study, with secondary analysis of data collected during the validation of a…
OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents.…
BackgroundThe death of a newborn is a traumatic life changing event in the lives of parents. We hypothesized that bereaved parents of newborn infants want to have choices in the personal care of their infant at the end of life.MethodsParents who had…
The Sanfilippo Behavior Rating Scale (SBRS), a 68 item questionnaire, has been developed to assess the behavioral phenotype of children with Sanfilippo syndrome and its progression overtime. Fifteen scales rate orality, movement/activity,…
Background Because of their individual rarity, genetic diseases and other types of rare diseases are under-represented in healthcare coding systems; this contributes to a lack of ascertainment and recognition of their importance for healthcare…
Objective To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer.…
BACKGROUND: Adolescents and young adults with cancer have inferior survival outcomes compared with younger pediatric patients and older adult patients. Lack of insurance may partly explain this disparity. The objective of this study was to identify…
Neurological symptoms are very common in children with life-limiting conditions and are challenging in terms of burden of illness. Moreover, neurological symptoms can significantly impact the child's quality of life and contribute to distress among…
BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have…
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…
In the latest of a monthly series in which patients and carers set the learning outcomes for readers, Alison Pearson asks healthcare staff to reconsider the concept of offering “false hope.” For more information about the series, contact Rosamund…
OBJECTIVE: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with…
Background: Sleep disturbance is part of the behavioural phenotype of the rare genetic condition mucopolysaccharidosis (MPS) type III. A growing body of evidence suggests that underlying disturbance in circadian rhythm functioning may explain sleep…
BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study…
OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and…
OBJECTIVE: To describe variability in end-of-life practices among tertiary care PICUs in the United States. DESIGN: Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the…
The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of…
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.…
Combination antiretroviral therapy (cART) has extended the longevity of human immunodeficiency virus (HIV)-infected individuals. However, this has resulted in greater awareness of age-associated diseases such as chronic obstructive pulmonary disease…
Attention bias modification treatment (ABMT) is a novel treatment for anxiety disorders. Although a number of other meta-analytic reviews exist, the purpose of the present meta-analysis is to examine issues unaddressed in prior reviews. Specifically,…
PURPOSE: To examine bereavement mental health service use, barriers to use, and factors associated with use in parents bereaved by cancer. PATIENTS AND METHODS: A multicenter, cross-sectional study of 120 parents bereaved by cancer between 6 months…
