Browse Items (168 total)

Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based…

CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing…

OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience…

BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these…

BACKGROUND: Perinatal grief is a process that affects families in biological, psychological, social and spiritual terms. It is estimated that every year there are 2.7 million perinatal deaths worldwide and 4.43 deaths for every 1000 births in Spain.…

BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found…

Background: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT.…

This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful…

Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this…

Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…

PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10…

CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain…

Contexts: Inadequate pain management in community pediatric palliative care is common. Evidence to inform improved pain management in this population is limited. Objective(s): To explore the barriers and facilitators to pediatric community-based pain…

BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However,…

OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…

Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more…

BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of…

OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care…

Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…

OBJECTIVE: To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program. STUDY DESIGN: Participants were parents (n=35…

BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes.…

BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are…

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification…

OBJECTIVE: Pediatric health systems are increasingly screening caregivers for unmet social needs. However, it remains unclear how best to connect families with unmet needs to available and appropriate community resources. We aimed to explore…

Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the…

Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little…

OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement…

BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative…

OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness…

UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of…

Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and ~1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal…

AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by…

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this…

Background: While work with adolescent in Paediatric Palliative Care we need to notice their development (psycossocial and cultural). The adolescence it is characterized by social questions, where the adolescent need to belong to some group and their…

Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train…

This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's…
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