Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s):…
Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The…
Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric…
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve…
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of…
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as…
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential…
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…
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…
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick…
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed…
Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…
Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make…
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…
OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth…
Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to…
Objectives Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients. Methods This retrospective cohort study used the…
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care…
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at…
Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep…
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a…
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the…
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study…
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of…
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and…
Topic significance and study purpose/background/rationale: Patients undergoing hematopoietic stem cell transplant (HSCT) are at risk for significant morbidity and mortality and experience distressing psychological and physical symptoms. Access to…
Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal…
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's…
