Browse Items (346 total)

BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE(S): This study explored US…

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…

OBJECTIVE: To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY DESIGN: Surveys were developed and administered to…

BACKGROUND:
This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these…

BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…

Despite a great deal of effort and many articles addressing the end-of-life care of children and adults in intensive care units,1 2 paediatricians continue to be confronted by parents wanting “everything done”. Such an appeal is often construed by…

Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes…

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…

OBJECTIVES: To determine the clinical metrics of functional assessments in pediatric critical illness survivors. DESIGN: Cross-sectional observational study. SETTING: PICU follow-up clinic. PATIENTS: Forty-four PICU survivors 6-12 months post PICU…

Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges…

A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of…

The prevalence of Pediatric Palliative Care (PPC) programs for children significantly increased over the past two decades. In more recent years, however, evidence suggests a plateau in program expansion and service reach, despite the current reality…

BACKGROUND: Spinal muscular atrophy is an autosomal-recessive, progressive neuromuscular disease associated with extensive morbidity. Children with spinal muscular atrophy have potentially increased life spans due to improved nutrition, respiratory…

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…

Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care…

Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and…

Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how…

Background: Providing long-term care for a family member can be a source of severe stress for the untrained caregiver, and is known to cause depression, poor overall health, and lower quality of life for the caregiver. This burden may lead to poorer…

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric…

Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or…

OBJECTIVE: To estimate when a difference in disability symptoms is sufficiently large to be important to individual patients. DESIGN: Cross-sectional analysis of two groups: derivation set (n = 46) and validation set (n = 57). SETTING: The Arthritis…

Background: Palliative care is an essential element of universal health coverage. However, palliative care services, particularly pediatric palliative care (PPC) services, are still inadequately developed in many countries, not least members of the…

BACKGROUND: Cystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the…

BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.

OBJECTIVE:
We evaluated…

Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…

Introduction: The high incidence and prevalence of chronic pain in patients with CF is well documented. In patient surveys, reports of intense pain range from 33% - 82% of respondents. Commonly reported sources of pain include headache, sinuses,…

OBJECTIVE: To prospectively determine opinions of members of a pediatric intensive care unit (PICU) team regarding the appropriateness of aggressive care. The types of support that caregivers sought to limit and their reasons for wanting these limits…
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