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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…
PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth…
BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a…
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that…
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established,…
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…
Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have…
OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but…
Background/aims: Define a gradual transition from pediatric to adult palliative care able to support adolescent patients (pts) with chronic and progressive diseases and their family.
Background: Dignity Therapy (DT) is a validated psycho-therapeutic intervention designed to influence a sense of meaning and purpose for individuals and their families. DT is well received by patients and family members, with research identifying…
CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they…
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of…
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…
BACKGROUND: A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up…
Objective To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital. Design Observational cohort study using linked routinely collected data. Setting…
BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to…
OBJECTIVE: To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions. METHOD(S): Eight online databases (PubMed, Medline, EMBASE,…
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of…
Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…
BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…
OBJECTIVES: To evaluate safety and pharmacokinetic parameters (PK) of medical cannabis in add-on for children and young adults with drug-resistant epilepsy. DESIGN, SETTING: Ten patients (4 females, 6 males, age 2.5-23.2 years) were enrolled in a…
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation…
Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children…
Objectives: * Describe the logistics of using telemedicine through an outpatient Pediatric Palliative Clinic. * Describe the experience of using telemedicine from the perspective of the parent, nurse, and physician.
Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in…
Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the…
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the…
INTRODUCTION: Parental socioeconomic status has been proposed to have an influence on childhood cancer mortality even in high-income countries. Our study investigated the influence of parental socioeconomic factors on childhood cancer mortality.…
Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death'…
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable…
Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty…
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the…
Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer…
Medical marijuana (MM) is widespread in many medical fields, including oncology, with limited use in pediatric oncology where research is scarce and often shows conflicting results. This research focuses on alleviating side effects of anticancer…
Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative…
CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear. OBJECTIVE(S): The objective of the study was to…
Adolescents and young adults 15 to 25 years of age with incurable cancer are a unique patient group. There is growing evidence of the emotionally taxing nature of this work, yet limited understanding of the health care professional experience across…
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand…
