Browse Items (332 total)

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life.…

Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of…

CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on…

OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking…

The article offers a description of parents' experiences of their child's ultimately fatal illness as it unfolds over the successive stages of medical treatment, in the context of the liminality theory. The parents (N = 23) were interviewed 1-4 years…

Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's…

Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of…

This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month…

Children living with medical complexities are a growing population in the United States. Supportive pediatric health care team members are arguably the single most important factor in helping mothers manage their child's multifaceted condition. To…

INTRODUCTION: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home…

Background and Objective : Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect…

The death of a child is a tragic, devastating event with enormous emotional and relational impact on the family unit. Parental changes are significant, encompassing the psychological, physical, spiritual, and interpersonal realms. Little bereavement…

Objective: Symptom burden of children with cancer appears to contribute to parent distress, but the mechanisms of this relationship are relatively unexplored. The current cross-sectional study examined rumination (i.e., repeated focus on negative…

CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care.…

Objectives To qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not…

BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study…

PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such…

BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related…

Objective: To understand what considerations drive family decisions for, and against, pediatric home ventilation. Study design: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3…

Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication…

Objective The purpose of this scoping review was to identify the experiences of parents who endured the death of their child in the paediatric intensive care unit (PICU) and what end-of-life care they perceived as supportive. Design Scoping review…

BACKGROUND: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main…

BACKGROUND: Living with a life threatening/limiting condition changes and challenges children's play. The environment is known to support participation in play, yet there is a lack of evidence highlighting its specific factors contributing to…

Introduction: Specialized palliative home care (SPHC) enables children and adolescents with life-limiting illnesses and complex needs to receive care at home. In addition to controlling symptoms and stabilizing the psychosocial situation, crisis…

INTRODUCTION: Patients in pediatric palliative care (PPC) live with multiple comorbidities which represent a risk factor for severe form of COVID-19. METHODS: This monocentric retrospective study was performed at the PPC Center of Padua (Italy).…

This study aimed to explore grandparents' experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group…

Background: To provide proper care for infants at risk for death, neonatologists need expertise in many areas of palliative care. Although neonatology training programs have implemented a wide variety of palliative care educational programs, the…

Objective: The aim of this study was to measure implementation of quality indicators (QIs) of Perinatal/Neonatal Palliative Care (PNPC) as reported by participants following a one-year training course. Study Design: A cross-sectional survey…

Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, hospital-based care models may be perceived as the only…

BACKGROUND: Children with advanced cancer and their primary caregivers may experience severe stress and anxiety in coping with their life-threatening condition. As a way to help reduce these stressors and increase overall quality of life, research…

OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…

OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to…

BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural…

BACKGROUND: A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up…

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: In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the…

Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a…

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and…

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: For hospitalized children admitted outside of a critical care unit, the location, mode of death, "do-not-resuscitate" order (DNR) use, and involvement of palliative care teams have not been described across high-income countries.…
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