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INTRODUCTION/BACKGROUND: More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been…
BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication…
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language…
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…
OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated…
BACKGROUND: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. OBJECTIVE: The objective of this pilot study was to provide suggestions from medical…
Cornelia de Lange syndrome (CdLS) is a cohesinopathy causing delayed growth and limb deficits. Individuals with CdLS have mild to profound intellectual disability and autistic features. This study characterizes the behavioral phenotype of children…
Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase…
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has…
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…
Introduction: Family conferences between parents of critically ill children and health care providers in the pediatric intensive care unit (PICU) serve an important role in family centered care. Many family conferences include palliative care…
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU…
Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness,…
BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled…
