Purpose: To compare risk behaviors between youths living with a chronic condition (CC) and their healthy peers, controlling for condition severity. Methods: Data were drawn from the baseline wave of the GenerationFRee study (students aged 15-24 years…
Introduction To discuss the extended family support that is required in children's palliative care, focusing on Grandparents, who sometimes may be seen as the 'forgotten mourners'. Objectives Utilizing art psychotherapy in a group setting to…
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…
PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively.…
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…
In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that…
Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure,…
Decisions about whether to withdraw or withhold life-sustaining medical treatment from children give rise to complex and value-laden judgments. While recourse to the courts is uncommon, judicial decisions provide an important source of guidance for…
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes,…
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We…
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has…
Objectives * Describe two benefits of a web-based educational tool for parents of children with serious illness and clinicians who care for them. * List three common themes explaining what is most important to parents of seriously ill children in…
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: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations. STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18…
Minimal research exists on the participation of young children who are five years and younger. The purpose of this study is to describe the participation of young children who use a large children's treatment centre in Ontario, Canada in relation to…
Learning Objectives: Assessing competence in pediatric critical care medicine (PCCM) training is challenging, and Entrustable Professional Activities (EPAs) were recently introduced to enhance the assessment process. There are 7 EPAs that define the…
This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and…
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…
CONTEXT: Implementation of pediatric palliative care as a primary practice relevant for all pediatricians and pediatric subspecialists requires a grounding, shared knowledge. This study reports on the innovative application of a monthly Palliative…
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…
Objective: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…
AIM: To increase understanding of grandparental grief following the death of a grandchild from a life-limiting condition. DESIGN: META-ETHNOGRAPHY: DATA SOURCES: Academic Search Complete (2015, updated 2018), CINHAL, Embase, psycINFO, PubMed and Web…
Background: A ground breaking paediatric palliative care study in Scotland in 2015 identified that 15,400 babies, children and young people (BCYP) with life-limiting conditions required input from palliative care services, significantly higher than…
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…
BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose…
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly…
Nurses are looking beyond parents to provide bereavement support for the wider family
Nurse consultant Michael Tatterton’s research revealed that when a child with a life-limiting condition dies, the grandparents’ ‘unique footprint of grief’ is…
A high prevalence of sleep problems exists in children and adolescents with life-limiting conditions (LLC) and severe psychomotor impairment (SPMI). This study aimed to compare the impacts of various child-related (pain, epilepsy, repositioning,…
Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews…
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain…
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain…
Aims and objectives To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years,…
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well…
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little…
Introduction: In Italy there are approximately 12000 children affected by life-limiting illnesses, which require palliative care services. The national reality, however, confirms the lack of a proper palliative care services network to ensure relief…
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a…
AIM: The aim of this study was to identify the potential risks and benefits of sleeping infants in a Pepi-Pod distributed to families with high risk of sudden unexpected death in infancy compared to a bassinet. METHODS: Forty-five mostly indigenous…
