Browse Items (251 total)

Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and…

OBJECTIVES: For parents, family or clinicians of children with rare, life-threatening conditions there is little information regarding likely symptoms, illness trajectory and end-of-life care. This descriptive analysis of a bereaved cohort recruited…

CONTEXT: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective…

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…

CONTEXT:
Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in…

CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: To describe…

Context: Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment.Objectives: The objective of this study was to…

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…

Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of…

Objectives
•Describe steps to take before starting the procedure to ensure comfort for the patient and family.
•Identify likely symptoms during and after the extubation and their management.
•Describe ways to support family and staff during and after…

Conceptual models and the taxonomies associated with them are inherent tools of goal-directed activity. Conceptual models partition reality, discerning differences within a phenomenologic continuum; a process that is a fundamental requisite for…

CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families…

CONTEXT:
In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the…

Objectives

Identify the core category for parents of a seriously ill child about the decision making process at the hospital.

Identify parents' preferences when they have to make a decision on behalf of their seriously ill child.
Original…

CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life…

Context: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life…

CONTEXT: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to…

The Paediatric Pain Profile (PPP) is a 20-item behavior-rating scale designed to assess pain in children with severe to profound neurological impairment. Three raters independently used the PPP to rate behavior of 29 children (mean age 9.6, SD 5.8)…

Assess pain regularly throughout the course of treatment. Follow the WHO Analgesic Ladder for selecting pain-relief drugs, that is, a stepwise approach to analgesic management, where a child's pain severity determines the level of analgesics. Use…

Objectives
Describe how and when individuals with cystic
fibrosis learn about prognosis with a life-limiting
disease, specifically its progressive nature and
the median life expectancy.
Describe the emotional impact of initial communication
about…

To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative…

Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S.…

Background Prescription drug abuse is an epidemic in the US, leading to increased government oversight in opioid prescribing. The issue becomes more complicated when minor children are involved. One pediatric palliative care team found that of 62…

CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial…

Concerns that high dose opioids and sedatives might shorten patient survival could contribute to insufficient symptom alleviation for terminally ill cancer patients. To examine the effects of opioids and sedatives prescribed in the final 48 hours on…

Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the…

Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive…

CONTEXT:
The need for children's palliative care (CPC) globally is unknown. To understand the scope of the need and to advocate to meet it, more accurate estimates are needed.
OBJECTIVES:
The objective of this study was to create an accurate global…

Research has demonstrated the significant symptom burden present at the end of life of terminally ill children. Medicine has always viewed the relief of pain and suffering as a fundamental human right and a moral and ethical obligation. At the end of…

Performance scales are used by clinicians to objectively represent a patient's level of function and have been shown to be important predictors of response to therapy and survival. Four different scales are commonly used in the palliative care…

Palliative care surveys often rely on bereaved family members to act as proxies to provide information on patient care at the end of life, after the patient's death. However, when comparing bereaved family members' assessments with those of the…

Objectives
Describe categories of need faced by parents and
patients in pediatric palliative care.
Describe unmet needs faced by parents and patients
in pediatric palliative care.
322 Schedule with Abstracts Vol. 51 No. 2 February 2016
Describe…

Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over…

Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice…

Objectives
Summarize the current state of our understanding
of spiritual needs of children facing lifethreatening
illness.
Learn basic skills for being a spiritual generalist
and how to begin exploring spiritual needs of
children facing…

CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on…
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