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Context Traditional, complementary, and integrative medicine (TCIM) is being increasingly used to manage symptoms in patients with palliative needs. However, there is a lack of evidence to guide its use in the pediatric palliative care (PPC) setting.…
Abstract Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs). Methods: We conducted a cross-sectional study in young people aged 8 years…
Abstract Context: Children with heart disease are at risk for early mortality and parents often perceive suffering at end-of-life (EOL). Involvement of pediatric palliative care (PPC) is a proposed quality measure at the EOL in children with cancer,…
Abstract Background: Municipality-based pediatric palliative care (PPC) is recommended to promote the quality of life for the child and family by enabling them to stay at home as much as possible. However, municipality-based PPC presents complex…
Abstract Introduction: Perinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life-limiting fetal condition who continue their pregnancy. The provision of PPC is within…
Objectives This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to…
Abstract Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of…
Abstract Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into…
BACKGROUND: Effective training of health professionals is essential to end-of-life care. AIMS: To explore the level of knowledge on paediatric palliative care (PPC) of nurses in a children's monographic hospital. METHOD(S): Cross-sectional…
Abstract Background Pediatric Palliative Care (PPC) has been shown to offer a wide berth of supportive services for families as they navigate life with pediatric heart disease. PPC assists families in medical decision making, symptom management,…
Background/Objectives: Off-label drug use is prevalent in pediatric care, particularly in pediatric palliative care (PPC), due to the scarcity of pediatric-specific formulations and clinical trials. Differences in perception between healthcare…
Context Little is known about the prevalence of goal-concordant care (GCC) in the NICU and whether it can be measured from chart data. Objectives To determine if GCC can be evaluated using chart data, to identify factors associated with GCC, and to…
Abstract Background Neonatal palliative care is an essential component of comprehensive neonatal care; however, its implementation remains challenging worldwide, particularly in low- and middle-income countries due to limited resources, cultural…
Background:The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on…
Parenting a seriously ill child is complex and emotionally intense. To further develop Hinds and colleagues? Good Parent themes: ?Keeping a Positive Outlook? and ?Keeping a Realistic Outlook,? we reviewed grounded theories published in English…
Abstract Background: Guidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents. Aim: Review the evidence on…
Abstract Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases,…
Abstract Background: This study aimed to identify barriers to paediatric palliative care provision at one Palestinian paediatric hospital, elucidate reasons for the barriers, provide recommendations for enhancing care and identify topics for future…
Abstract Background: Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best…
Abstract Shared decision making is a concept essential to establishing meaningful goals of care that reflect one's preferences, values, beliefs, culture, and quality of life. This rapid review considered shared decision making from the perspective of…
Abstract Introduction: Hospital-based supports for families following the death of a child are rare. Virtual interventions may address key barriers to providing bereavement care, but little is known about their acceptability, feasibility, and…
Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two…
OBJECTIVES: This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the…
Abstract Background Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While…
Abstract Background/Objectives: Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the…
Introduction: This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with…
Abstract Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for…
Abstract Background: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home…
Abstract Purpose: The purpose of this study was to inform perinatal loss care by expanding upon the five processes of Swanson's Theory of Caring through a holistic lens. Study design and methods: This study was a qualitative content analysis of 34…
Abstract Background: The PalliPed project is a nationwide, observational, cross-sectional study designed with the aim of providing a constantly updated national database for the census and monitoring of specialized pediatric palliative care (PPC)…
Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of…
Abstract Introduction: Pain is a very common symptom in children who have a complex, chronic, life-threatening or life-limiting disease, generating a negative impact on the quality of life of the child and his or her family. There is very limited…
Medical and pharmacological advancements have influenced the ability to treat acutely ill neonates. However, complications of prematurity mean that death is unpreventable in some cases. The aim of this study was to explore parents' lived experiences…
Abstract Objective: The study aimed to evaluate the effects of musical-animated toys and audiobooks on the fear and pain in the tracheostomy care of children in the palliative care clinic. Methods: The study design was a single-center, single-arm,…
