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Background: Wish-granting interventions are recognized as positive experiences for children with critical illness and their families. While the positive effects have been shown in the immediate and short term, data on their long-term effects are…
Background: The death of a child due to complex congenital heart disease (CCHD) in pediatric intensive care units profoundly affects families, often resulting in lasting grief and emotional distress. Despite advancements in pediatric palliative care…
AIM: To study Swedish pediatric oncologists' practical and emotional experiences of referring, including and/or treating children in early-phase clinical trials. METHODS: A nationwide study was conducted using a mixed-method approach. Structured…
Background: Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to…
Background: Our knowledge about the attitudes of healthcare staff to palliative care in pediatric oncology is scarce. We aimed to assess their perceptions of palliative care in Hungary and find answers to the question of how to provide good…
BACKGROUND: Although most children with cancer die in low- and middle-income countries, palliative care receives limited attention in these settings. This study explores parents' perspectives on experiences and needs of children dying from cancer.…
Background: Palliative care is one of the primary rights of children with cancer and their families. Identifying the unmet needs of palliative care for these children is important in providing high-quality care. Objectives: The present study aimed 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…
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…
OBJECTIVE: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. METHODS: We conducted a cross-sectional qualitative study among…
Understanding the meaning of loss for racialized immigrant fathers and addressing their experiences in a culturally competent manner is important in an increasingly ethnoculturally diverse country like Canada. Culture, customs and rituals influence…
Background/objectives: Pediatric palliative care refers to active, holistic care that provides support not only for families but also for the physical, psychological, social, and spiritual needs of pediatric patients with severe life-threatening…
(1) Objectives: The purpose of this study was to investigate the studies that evaluate the effectiveness of immersive virtual reality (VR) as a distraction technique for pain and anxiety associated with medical procedures in children and adolescents.…
Background: Survival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has…
BACKGROUND/OBJECTIVES: Patients with life-limiting conditions (LLCs) often suffer from restlessness, spasticity, pain, and seizures. Dronabinol (DRB) may have a relieving effect; however, data on the effectiveness of DRB in children with LLCs are…
Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in…
Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the…
Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional…
Background: An important first step in enhancing professional palliative care training is to investigate the educational needs of pediatric clinicians in this field. The aims of this research were to analyze the extent of end-of-life care experience…
PURPOSE: The objective was analysed the patterns use of healthcare services of this population and the influence of their clinical and sociodemographic characteristics. DESIGN AND METHODS: A six-year longitudinal follow-up study was performed to…
BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL.…
BACKGROUND: In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from…
Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric…
Background: Children with severe neurologic impairment (SNI) regularly require major surgery to manage their underlying conditions. Anecdotal evidence suggests that children with SNI experience unexpected and persistent postoperative functional…
Abstract Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision.…
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized…
Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is…
Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO.…
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often…
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of…
Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being.…
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…
(1) Background: Growing evidence indicates benefits through exercise programs in pediatric oncology throughout the whole cancer trajectory. This should include palliative care, too. This project analyzes the feasibility of a supervised exercise…
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for…
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families…
BACKGROUND: Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort.…
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was…
To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for…
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of…
