CONTEXT: Studies suggest the feasibility and acceptability of telehealth in outpatient pediatric palliative care. However, there is a need for data that describes the implementation and quality of telehealth, relying on objective and validated…
Abstract This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward…
BACKGROUND: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members.…
Abstract Background Healthy siblings of children with life-limiting conditions often experience emotional and behavioral struggles over the course of the ill child’s condition(s). Resources to support these siblings are limited due to the…
BACKGROUND: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life…
Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is…
INTRODUCTION: The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes. METHODS: We conducted a scoping review to summarize the available empirical literature on the experiences of…
Background: Pediatric palliative care (PPC) aims to improve quality of life for patients with life-limiting diseases and complex symptoms irrespective of cure-directed therapy. Generally an early integration of PPC is recommended. This is also the…
Abstract Perinatal loss, the tragic event of losing a baby before, during, or shortly after birth, is a profoundly distressing experience for any family. We focus on the unique challenges faced by diverse families, encompassing those from…
OBJECTIVES: Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their…
Palliative care in the field of urology has largely been limited to adult oncologic conditions. Although there is a plethora of established literature suggesting the advantageous impact of palliative care, there is limited integration of palliative…
Aim: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the…
Importance: Critically ill children with pre-existing mental health conditions may have an increased risk of poor health outcomes. Objective: We aimed to evaluate if pre-existing mental health conditions in critically ill pediatric patients would be…
Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite…
BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is…
Abstract Introduction: Most pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those…
Abstract Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to…
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…
Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate…
OBJECTIVE: Describe care surrounding the end of life (EOL) in the neonatal intensive care unit (NICU). STUDY DESIGN: Retrospective chart review of 208 infants who died in a level IV referral-only NICU over 5 years. RESULTS: A goals of care (GOC)…
The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU…
Extract I. INTRODUCTION The case of Indi Gregory is the last of a series of high-profile judgments regarding the end-of-life for terminally ill children. Such cases have typically generated wide controversy among scholars, practitioners, the general…
In this chapter we will describe the evidence for palliative care family support beginning in the prenatal period and extending to acute and chronic neonatal intensive care unit (NICU) care and finally to bereavement. Neonatal providers have the…
Abstract Background Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care…
BACKGROUND: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the…
BACKGROUND: End of life care for Children and Young People (CYP) is known to be an emotive area of practice. Previous studies involving qualified nurses have demonstrated that nurses feel they need more end-of-life care education, as well as a…
This Viewpoint dismantles the notion of a “good death” in pediatrics using quotes from bereaved parents and provides actionable alternatives to improve quality end-of-life care for dying children and their families. Plain language summary This…
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…
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.…
BACKGROUND AND OBJECTIVES: Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time…
Gastrointestinal symptoms and problems (GI-SP) frequently cause discomfort and suffering in pediatric patients with life-threatening and/or life-limiting illnesses (LTI/LLI). Pediatric palliative care (PPC) professionals should be aware of them and…
Abstract Background Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of…
Abstract The occurrence of perinatal losses is an unfortunate, yet common degeneracy that implements perturbing taxation on the mental, emotional, and marital health of mothers considering the grief they impose. This study is a quantitative venture…
The development of an empathetic approach when working with parents and families is fundamental to both social work and children's nursing; however, opportunities to develop this are limited. RealCare Baby infant simulator dolls were used with the…
Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure,…
Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists…
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…
Clinical empathy is a multidimensional ability to feel the patient's suffering, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others.…
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…
There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical…
