Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young…
Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The…
Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose 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…
Abstract Background: As the United States braces for full implementation of health care reform, the eyes of the nation are on Medicaid. The large number of newly eligible Medicaid beneficiaries may challenge health care resources and ultimately…
Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has…
BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well…
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…
BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to…
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving…
Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital…
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…
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: 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…
Objective The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. Methods Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than…
Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In…
Background: Concurrent care enables seriously ill pediatric Medicaid and Children's Health Insurance Program (CHIP) beneficiaries to continue curative treatments along with the supportive services usually associated with hospice care. Although a few…
events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense, and those grieving such a loss have unique needs. One of the things that nurses can do to assist families in these situations…
BACKGROUND: The provision of Section 2302 of the 2010 Patient Protection and Affordable Care Act (ACA) allowed pediatric patients who are enrolled in Medicaid to receive hospice care concurrently with curative treatment (i.e., concurrent hospice…
BackgroundThe 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.ObjectiveThe purpose of this study was…
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life…
BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature…
Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes…
Using a sample of 18,152 pediatric hospice patients, this study assessed the cost-effectiveness of concurrent care over standard hospice care. Analysis of incremental cost-effectiveness ratios with bootstrapping simulations showed that concurrent…
CONTEXT: Children at the end of life often lack access to hospice care at home or in a dedicated facility. The factors that may influence whether or not hospices provide pediatric care are relatively unknown. OBJECTIVES: The purpose of this study was…
CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To…
The geographic interface between the need for and the supply of pediatric hospice may be critical in whether children with cancer access care. This study sought to describe the geographic distribution of pediatric hospice need and supply and identify…
Currently, little is known about how geographic information systems (GIS) has been utilized to study end-of-life care in pediatric populations. The purpose of this review was to collect and examine the existing evidence on how GIS methods have been…
Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among…
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from…
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in…
Introduction: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. Method(s): This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service…
Purpose: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act)…
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while…
Background: Over 42,000 children die each year in the United States, including many with multiple complex chronic conditions (MCCCs), but little is known about whether the presence of MCCCs influences families to utilize pediatric hospice care.…
OBJECTIVE:
To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations.
METHODS:
Using nurse intellectual capital theory, a multivariate analysis…
Background Provision of language services in pediatric hospice enables nurses to communicate effectively with patients who have limited English proficiency. Language barriers contribute to ethnic disparities in health care. While language service use…
BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention.…
