Browse Items (51 total)

BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency…

Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family…

BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during…

The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…

BACKGROUND: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale…

Objectives: * Compare the benefits of a primary palliative care model to those of a specialty palliative care service. * Propose a stepwise process to initiate the transition from a specialty palliative care service to a primary palliative care…

Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April…

Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients…

Introduction: Due to epidemiological change, interest in complex chronic conditions has been increasing within the pediatric health system. As such, we aim to evaluate hospital inpatient care in the National Health Service (mainland Portugal) by…

Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…

Background: Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. Purpose: The purpose of this study was to understand the…

Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is…

Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often…

OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to…

The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…

OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews…

The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research…

OBJECTIVE: To assess health insurance status and health care access of young adults with disabilities attributable to a chronic condition. DESIGN AND SETTING: We analyzed data from the National Health Interview Survey from 1999 to 2002. We present…

Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus…

Since 1977, the WHO Model List of Essential Medicines (EML), published by WHO, has provided advice for Member States that struggle to decide which pharmaceutical technologies should be provided to patients within their public health systems.…

This article has described issues associated with transition planning for youth with CHD. A number of approaches have been described to address the needs of this growing number of youth with CHD. Transition to adulthood has been and will continue to…

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…

The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational…

Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for…

Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable…

OBJECTIVE: This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families., METHODOLOGY: Semistructured interviews were conducted…

OBJECTIVE: Needs assessment is a critical part of the design and implementation of telehealth projects. This study assessed the need for a telehealth link between a local community and a tertiary-care medical center. METHODS: The assessment was…

According to recent data, 78 percent of hospice social workers' direct practice hours are spent with patients and families diagnosed with terminal cancer. A national sample of 108 hospice social workers participated in an exploratory study…

Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that…

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…

UNLABELLED: Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain…
Output Formats

atom, dcmes-xml, json, omeka-xml, rss2