AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life.…
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on…
A preliminary evaluation to review the scope and quality of evidence surrounding transdermal buprenorphine use in the pediatric setting for non-surgical pain was conducted. Our review revealed limited data available on the use of transdermal…
BACKGROUND:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people.…
OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill…
CONTEXT: Compassionate deactivation (CD) of ventricular assist device (VAD) support is a recognized option for children when the burden of therapy outweighs the benefits. OBJECTIVES: To describe the prevalence, indications, and outcomes of CD of…
While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care,…
CONTEXT: Palliative care in children is used to be only intended for those in near end-of-life phase. Ideally, palliative intervention should be given since the first time of cancer diagnosis. Palliative care is introduced from the beginning of the…
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1)…
Pediatric palliative care teams provide an additional layer of continuity and support to children and families throughout the course of any serious illness. The mentioned concepts offer support to a child's primary medical team who play an…
INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the…
Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families,…
BACKGROUND: Play is central to children's lives. Children living with palliative care needs experience disruption in their play. In this study, we sought to discover the characteristics and patterns of children's play when receiving care in…
Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the…
The Boston Children's Hospital Hematology/Oncology Bereavement Program has supported bereaved parents for three decades following the death of their child from cancer or blood disorder. An analysis of the current bereavement program as well as a…
BACKGROUND: When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which…
Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates…
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…
Pain and distress in the paediatric palliative care population can be very difficult to manage. Clinical scenarios range from the acute management of cancer-related pain at the end of life to the ongoing long-term support of children with complex…
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already…
Children and young people with life-limiting illnesses who need palliative care often have complex diverse medical conditions that may involve multiple hospital presentations, medical admissions, care, or transfer to other medical care facilities. In…
OBJECTIVE: Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it…
The goal of this qualitative research was to achieve a deeper psychological understanding of professional hospital clown work with hospitalized children during their end-of-life care period. Using a statistical text analysis with a co-occurrence…
Background/aims: The death of a child or young adult is fundamentally painful. Evaluating end-of-life care experiences can identify specific needs and ensure good quality care is provided. Our aim was to identify tools assessing quality of dying,…
INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's…
INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's…
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…
Background/aims: The COVID-19 pandemic has resulted in global mass bereavement; in the UK alone there have been 140,000 deaths to date, with a disproportionate impact on Black, Asian or minoritized ethnic (BME) communities. Voluntary and community…
acial and ethnic inequities are well documented in medicine (1). Patients from historically marginalized groups have consistently reported medical mistrust, poor communication, and perceived discrimination as barriers to the care that they receive…
Background: Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care…
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population…
Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment,…
Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support…
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore…
OBJECTIVES: When active treatment is no longer in the best interests of the patient, redirection of care to palliation is an important transition. We review, within a tertiary neonatal intensive care unit (NICU), the journey leading to the decision…
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be…
Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes…
OBJECTIVE: While improvements in healthcare have resulted in children with complex and life-threatening conditions living longer, a proportion of them still die. The death of a child puts parents at increased risk for anxiety, depression, and…
