Palliative care suffers from an identity problem. Seventy percent of Americans describe themselves as “not at all knowledgeable” about palliative care, and most health care professionals believe it is synonymous with end-of-life care.1 This…
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…
Abstract Objectives: In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care…
Introduction Communicating with patients about their feelings and preferences for the future is a challenging element of palliative care. Useful evidence exists, but most is embedded in social-scientific rather than clinical research.Aims and Methods…
Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have…
The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability.…
OBJECTIVE: Although race and ethnic background are known to be important factors in the completion of advance directives, there is a dearth of literature specifically investigating the effect of race and ethnicity on advance directive completion rate…
BACKGROUND: Hip fractures constitute an economic burden on healthcare resources. Most persons with a hip fracture undergo surgery. As morbidity and mortality rates are high, perioperative care leaves room for improvement. Improvement can be achieved…
BACKGROUND: Children's palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and…
Objective To describe the outcomes and the expected postoperative course for patients with do-not-resuscitate (DNR) orders (DNR patients) who undergo emergency surgical management of bowel obstruction.Design We retrospectively identified all patients…
BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of…
BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…
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…
IMPORTANCE Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied. OBJECTIVE To examine the efficacy of…
Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the…
BACKGROUND: Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also…
OBJECTIVE:: To evaluate the feasibility and perceived benefits of conducting physician-parent follow-up meetings after a child's death in the PICU according to a framework developed by the Collaborative Pediatric Critical Care Research Network.…
Research indicates that approximately 40% to 70% of children with disabilities are identified and treated for feeding difficulties such as reflux. The available literature on children with trisomy 18 does not describe feeding needs or treatment. The…
Palliative care, a medical field that has been practiced informally for centuries, was recently granted formal specialty status by the American Board of Medical Specialties. The demand for palliative care specialists is growing rapidly, since timely…
In the GRADE approach, the strength of a recommendation reflects the extent to which we can be confident that the composite desirable effects of a management strategy outweigh the composite undesirable effects. This article addresses GRADE's approach…
AIMS: To elicit the views of children's nurses with regard to the personal, contextual and interprofessional challenges faced when delivering palliative and end of life care to children and young people in the community. METHODS: Semi-structured…
BACKGROUND:: Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support. OBJECTIVE::…
Background:Transition to adult services and adulthood is now a prospect for young people with life-limiting conditions requiring palliative care. Little is known about their transition experiences or how children's hospices can support a young adult…
Specialist paediatric palliative care is a relatively new area of paediatrics, and the interface with other disciplines can occasionally pose challenges for referrers due to lack of information about the diverse services available. Although services…
Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved…
Objectives: We sought to document the prevalence and nature of sleep-disordered breathing (SDB) in individuals with Friedreich ataxia (FRDA) as well as establish the relationship, if any, between SDB and clinical parameters of FRDA. Methods:…
AIM: To evaluate the efficacy of a home care program, closely integrated with a medical oncology department. PATIENTS AND METHODS: The charts, prospectively recorded, of all the patients treated at home by the "L'Aquila per la Vita" Home Care Unit…
Abstract Background: Complementary or integrative care therapies are promising adjunctive approaches to pain management for pediatric inpatients that are currently underused and understudied. The purpose of this study was to examine the potential…
OBJECTIVE: Chronic cancer pain is often refractory and difficult to treat. Ketamine is a medication with evidence of efficacy in the treatment of chronic pain. DESIGN: This article presents a synthesis of the data on ketamine for refractory cancer…
The increasing longevity of patients with congenital and developmental disorders of the nervous system reflects the palliative and social success of pediatrics in the past 2 decades. This success has resulted in an increasing number of adult patients…
The anticipated death of a child or young person is a relatively rare occurrence in the Western world. Many families receive support from children's health-care services until the late stages of palliation, with adult community nurses being involved…
Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home.…
