Browse Items (289 total)

The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and…

Although outcomes for children with heart disease have improved substantially over the past several decades, heart disease remains one of the leading causes of paediatric mortality. For children who progress to advanced heart disease, disease…

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…

The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the…

In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of…

Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with…

BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality,…

Background and Objective(s): Children with medical complexity (CMC) have multiple chronic health problems resulting in functional limitations and high resource utilization. Providing primary care for CMC can be time consuming and costly. This study…

Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a…

Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an…

Purpose: Parents caring for children receiving palliative care due to life-threatening illnesses face tremendous stressors, including providing nutrition to their child. Very little is known about this experience or how parents manage nutritional…

BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new…

OBJECTIVE: To assess differences in prolonged grief, depression, posttraumatic stress, and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender and to assess potential interactive effects of time since loss and…

Background: Reminiscence is used in a range of different interventions in palliative care, for example, Dignity Therapy or Life Review. However, literature has focused mainly on the methodology, and little has been published on patients' priorities…

Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper…

Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences,…

Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the…

Our pediatric palliative care group is called the "Pediatric Advanced Care Team," also known as "PACT." We created a novel system called #PACTimpact to identify situations in which team members go above and beyond for patients providing meaningful…

Podcasts have grown in popularity over the last several years. Pediatric Palliative Care services can use this medium of communication to reach families more effectively. Podcast use is determined by the schedule of parents rather than providers.…

Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of…

Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…

Background: End-of-life (EOL) care for a child is a high-stakes situation that requires careful planning and practice; there is only one chance to get it right. Additionally, distress is often high in those caring for dying children. Despite the fact…

Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician…

Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study’s purpose was to determine relationships between literacy, age, and race and their influence…

Background/objectives: Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics…

The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical…

This groundbreaking study focuses on the link between music-therapy and narrativity in a pediatric hematology-oncology unit. The goal is to observe and analyse the psychic processes in this therapeutic mediation. We aim to study the creative…

INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common…

Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the…

Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death'…

It is important for the health care community to understand the impact of a child’s death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them.…

OBJECTIVE: to identify, in scientific productions, nursing interventions in palliative care in children and adolescents with cancer. METHOD: integrative review of the literature through the databases: CINAHL, MEDLINE, IBECS, LILACS and SCIELO,…

Background: Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology. Objective: To determine…

BACKGROUND: Despite growing evidence and support for shared decision making, little is known about the experiences of parents who hold more active roles than they wish. METHODS: This was a prospective cohort study of 372 parents of children with…

Background: Legacy-making (i.e., a way for patients with terminal illness to create or do something for others as a means of remembrance) is rising in popularity in palliative medicine, although only one study has examined its impact in a pediatric…
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