Browse Items · Pediatric Palliative Care Library

Understanding Adult Hospices Caring for Children in California, 2018-2021

In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult…

Telemedicine: the Pediatric Palliative Perspective (FR476)

Objectives: * Describe the logistics of using telemedicine through an outpatient Pediatric Palliative Clinic. * Describe the experience of using telemedicine from the perspective of the parent, nurse, and physician.

Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats

Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…

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Who are the children using hospice care?

PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…

Perceptions of discrimination among Mexican American families of seriously ill children

This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided…

Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California

BACKGROUND: Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested…

Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care

BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability.…

End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries

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…

Recent trends in cerebral palsy survival. Part II: individual survival prognosis

AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…

Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010

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…

Posttraumatic growth in hospitalized children and adolescents

Objectives: This presentation will describe the phenomenon of posttraumatic growth through a review of the literature on complex developmental trauma and salutogenesis. A description of a multidisciplinary approach to support posttraumatic growth…

Enhancing resilience in hospitalized children and adolescents

Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty…

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs

OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition…

The economic burden of home care for children with HIV and other chronic illnesses

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill…

The comprehensive care team: a controlled trial of outpatient palliative medicine consultation

BACKGROUND: Little is known about the use of palliative care for outpatients who continue to pursue treatment of their underlying disease or whether outpatient palliative medicine consultation teams improve clinical outcomes. METHODS: We conducted a…

Family, maternal, and child health through photovoice

OBJECTIVE: (1) To introduce photovoice, a participatory action research methodology, for use by MCH program managers to enhance community health assessments and program planning efforts, (2) to enable community people to use the photovoice…

Do positive psychological states shed light on recovery from bereavement? Findings from a 3-year longitudinal study

The purpose of the current study was to document the course and 1-month post-bereavement predictors of both positive and negative psychological states in bereaved gay male caregivers for 3 years following the death of their partners. The results show…

Preventive services in a health maintenance organization: how well do pediatricians screen and educate adolescent patients?

OBJECTIVE: To determine whether pediatricians in managed care settings adhere to national guidelines concerning the provision of clinical preventive services. DESIGN: Surveys were mailed between September 1996 and April 1997 to all pediatricians…

Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial

CONTEXT: Adolescents' concerns about privacy in clinical settings decrease their willingness to seek health care for sensitive problems and may inhibit their communication with physicians. OBJECTIVE: To investigate the influence of physicians'…

Effects of offering advance directives on medical treatments and costs

Objective: To examine the effects of advance directives on medical treatments and on patient satisfaction and well-being and to determine whether the enhancement of patient autonomy through advance directives provides a more ethically feasible…

The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries

Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice…

Geographic variation in California pediatric hospice care for children and adolescents: 2007-2010

Objective: To map and describe the geographic distribution of pediatric hospice care need versus supply in California over a 4-year time period (2007-2010). Methods: Multiple databases were used for this descriptive longitudinal study. The sample…

End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities

Purpose Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However,the intensity of end-of-life care forAYAdecedents…

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