Browse Items (331 total)

PURPOSE: Promoting parent resilience may provide an opportunity to improve family-level survivorship after pediatric cancer; however, measuring resilience is challenging. METHODS: The "Understanding Resilience in Parents of Children with Cancer" was…

INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST)…

OBJECTIVE: To analyze the appropriate use of non-invasive ventilation and its contribution to improving comfort in pediatric palliative care patients. PATIENTS AND METHOD: This is a descriptive cross-sectional study comprising 55 palliative care…

INTRODUCTION: In Germany, 500 children die of malignancies per year. Many families wish to be cared for in a home setting at the end-of-life. METHODS: Families of children who were cared for by the paediatric palliative care team (PPCT) in a home…

BACKGROUND: The need for educational training of healthcare professionals in palliative care is an important issue. Training and practice of pediatric residents in the field of pediatric palliative care (PPC) has never been assessed, although the…

Since 2005, forgoing live-support (FLS) is allowed by the French law (known as the Leonetti law) for end-of-life patients only. This study aims at describing the variations over time in the use of the following methods to end life: FLS, brain death…

OBJECTIVE: The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they…

PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large…

Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been…

BACKGROUND: There is a positive relationship between parent and young child distress during cancer treatment. Dimensions of parent/child distress are multifaceted and associated with family function and quality of life outcomes. A critical…

BACKGROUND: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To…

After turning away from prescribed narcotics, a wounded Army sergeant has found hope. And some doctors see lessons for the business of long-term pain management.

Abstract Background: Outpatient palliative care services can improve patient outcomes, yet little is known about their structure and characteristics. Objective: To describe the structure and characteristics of outpatient palliative care services…

AIM: This study aimed to systematically review the psychometric properties and clinical utility of measures of activities of daily living (ADL) for children with cerebral palsy (CP) aged 5 to 18 years. METHOD: Five electronic databases were searched…

This paper describes a collaborative partnership in developing a children and young persons’ bereavement group. The course consists of a series of four sessions which encourage children to share and express feelings. The group uses a partnership…

Nonpharmacologic, mind-body interventions are used to reduce anxiety in pediatric patients. Anti-ganglioside GD2 monoclonal antibody (anti-GD2 MoAb 3F8) therapy is the standard of care for high-risk neuroblastoma and pain is its major side effect. We…

This article will cover the special considerations, challenges, and opportunities presented by caring for adolescents and young adults with life-threatening illnesses when the possibility of transition to an adult care setting arises.

Abstract Background: There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize…

Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for…

To understand more about final conversations (communication between loved ones from the point of terminal diagnosis until death), 49 children/adolescents provided final conversation advice for other youth and for the dying person. Advice for fellow…

We report the second family with AIMP1 deficiency, due to a homozygous truncating AIMP1 (g.107248613 C > T) mutation. This female showed early-onset developmental arrest, intractable epileptic spasms, microcephaly, and a rapid clinical course leading…

Malignant rhabdoid tumors (MRT) of soft tissues are aggressive tumors, which can be detected in almost any part of the body. MRT are rare, and very few cases have been reported in the literature. Prognosis of these tumors is extremely poor despite…

BACKGROUND Recent research shows a rising national prevalence of Life Limiting Conditions in children identifying an escalating need for paediatric palliative care services in the UK.(1) Hospice services must ensure quality, sustainable care and…

PubMed Central Canada (PMC Canada) provides free access to a stable and permanent online digital archive of full-text, peer-reviewed health and life sciences research publications. It builds on PubMed Central (PMC), the U.S. National Institutes of…

Background: Pediatric palliative care increasingly became integrated into health care institutions worldwide over the last decade. However, in Mexico and other developing countries with large populations of children, little is known regarding the…

Nurses are guided to use pain tools for assessing pain. Appropriate tools exist for all ages of children, as well as accounting for diverse communicative abilities and impairments such as brain injury. Use of pain tools, and good documentation of…

Sleep disturbances are prevalent in mucopolysaccharidosis Type III (MPS III), yet there is a lack of objective, ecologically valid evidence detailing sleep quantity, quality or circadian system. Eight children with MPS III and eight age-matched…

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

OBJECTIVE: To describe what has been published in Brazilian scientific literature regarding pediatric palliative care. DATA SOURCES: Bibliographic review with a descriptive approach. In LILACS and SciELO databases, the descriptors "palliative care",…

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

BACKGROUND: Children with 22q11.2 deletion syndrome (22q11DS) are at risk for social-behavioural and neurocognitive sequelae throughout development. The current study examined the impact of family environmental characteristics on social-behavioural…

OBJECTIVE: End-of-life discussions with patients can be one of the most difficult and stressful tasks for the oncologist. However, little is known about the discussions that healthcare providers have with patients in such situations and the…

Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain, as parents care for their…
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