Abstract：
:With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three "lessons learned" from this unique investigation of respite within pediatric hospice care.
journal_name
J Palliat Carejournal_title
Journal of palliative careauthors
Davies B,Steele R,Collins JB,Cook K,Smith Ssubject
Has Abstractpub_date
2004-01-01 00:00:00pages
277-86issue
4eissn
0825-8597issn
2369-5293journal_volume
20pub_type
杂志文章abstract：BACKGROUND:Health professionals are expected to support family caregivers of patients requiring palliative care. However, there is a dearth of empirical evidence to help clinicians identify caregivers who might be at risk of poor psychosocial functioning. PURPOSE:This secondary analysis of baseline data from a larger ...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2006-10-01 00:00:00
abstract：:In Spain, there is a general tendency to conceal the prognosis from a terminally ill patient. We conducted grounded-theory-based, phenomenological, qualitative research on this using a final sample of 42 in-depth interviews with doctors and nurses from different fields. We found that most health professionals believe ...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2009-10-01 00:00:00
abstract：:Despite very little confirming evidence, one of the most pervasive beliefs about dying is that terminally ill people receive a great deal of health care in the last few days, weeks, or months of life. A secondary analysis of 1992/93 through 1996/97 Alberta inpatient hospital abstracts data was undertaken to explore an...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2002-04-01 00:00:00
abstract：:Inpatient palliative care consultation has been demonstrated to improve quality of life as well as decrease hospital readmissions, intensive care unit transfers, and hospital costs for people with a life limiting illness. The clinical teaching units (CTUs) at London Health Sciences Centre (LHSC) routinely admit patien...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859718781363
更新日期：2018-10-01 00:00:00
abstract：OBJECTIVES:Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families. DESIGN:Thirty semi-structured interviews with qualitative content analysis...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859719845005
更新日期：2020-01-01 00:00:00
abstract：:Family care giving is important for the quality of life of terminally ill patients and their family members. Although family caregivers are generally eager to provide palliative care, at some point it may become too demanding, and then volunteers can make a difference. This four-study paper presents the experiences of...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2009-04-01 00:00:00
abstract：BACKGROUND:Little is known about current practice in using the anticonvulsant gabapentin in the management of cancer-related neuropathic pain. OBJECTIVES:The main objective of this study was to describe the pattern of gabapentin use as an adjuvant analgesic for cancer-related neuropathic pain in patients admitted to a...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2003-10-01 00:00:00
abstract：:This study measures the proportion of cancer patients in Ontario, Canada, with intensive care unit (ICU) admissions, emergency room (ER) visits, or chemotherapy in the last two weeks of life. We used the Ontario Cancer Registry to identify a cohort of cancer patients who died in 2001. These cases were then linked to a...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2006-04-01 00:00:00
abstract：:Families of patients are well poised to comment on the end-of-life (EOL) care received by those patients and can provide feedback to care providers and decision makers. To better understand family-member evaluations of the quality of in-patient EOL care, this study draws on qualitative interview data (n = 24) to ident...
journal_title：Journal of palliative care
pub_type： 杂志文章,多中心研究
doi：
更新日期：2011-01-01 00:00:00
abstract：:In 2006, the Indian Health Service (IHS) and the National Cancer Institute (NCI) collaborated to develop an interdisciplinary palliative training program for health professionals in the Indian health system. Their goal was to improve clinician knowledge and skills in palliative care, to train future trainers, and to i...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2010-04-01 00:00:00
abstract：INTRODUCTION:Health system restructuring combined with the preferences of many terminally ill care recipients and their caregivers has led to an increase in home-based palliative care, yet many care recipients die within institutional settings such as hospitals. This study sought to determine the place of death and its...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2010-01-01 00:00:00
abstract：OBJECTIVE:Palliative, end-of-life care (PEOLC) providers are poorly resourced in addressing the needs of patients with mental health challenges, and the dying experiences of this cohort-particularly those with a comorbid, chronic and persistent mental illness (CPMI)-are poorly documented. We sought to explore the exper...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859720951360
更新日期：2020-08-18 00:00:00
abstract：:Current definitions of "symptom burden" are largely derived from clinicians, and there are many variations in the way the term is used, defined, and operationalized. The aim of this study was to explore patient perceptions of symptom burden in the context of advanced and incurable disease. A group of 58 cancer patient...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2012-07-01 00:00:00
abstract：OBJECTIVE:This study aimed to characterize the strategies and psychosocial conditions that influence how resilient people live in the face of advanced cancer. METHODS:Grounded theory interviews and a survey of 10 resilient people with advanced cancer were collected and analyzed. FINDINGS:Personal assets - including p...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2013-07-01 00:00:00
abstract：:Although the consequences of prolonged lying on a hard surface are as old as the human race, publications on this subject are scarce. This is due to the fact that a decubitus ulcer never occurs in isolation but is nearly always a complication of some other condition. The term "decubitus" was already used by Hildnaus i...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：1992-07-01 00:00:00
abstract：:This multi-centre study of adjuvant "burst" ketamine in palliative care in-patients documents its effectiveness, duration of pain relief, and adverse effects (AE) profile. Patients received a three-to-five day continuous subcutaneous infusion (CSCI) of ketamine escalated from 100 to 300 to 500 mg/24 hours if required....
journal_title：Journal of palliative care
pub_type： 临床试验,杂志文章,多中心研究
doi：
更新日期：2010-10-01 00:00:00
abstract：PURPOSE:The present study assesses the relationship between patient dignity in advanced cancer and the following variables: psychological distress, preparatory grief, and sociodemographic and clinical characteristics. METHODS:The sample consisted of 120 patients with advanced cancer. The self-administered questionnair...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859718759882
更新日期：2018-04-01 00:00:00
abstract：:Medical professional societies have traditionally opposed physician-assisted suicide and euthanasia (PAS-E), but this opposition may be shifting. We present 5 reasons why physicians shouldn't be involved in PAS-E. 1. Slippery slopes: There is evidence that safeguards in the Netherlands and Belgium are ineffective and ...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859718777325
更新日期：2018-10-01 00:00:00
abstract：:In 1992, 82.2% of deaths in Alberta occurred in acute care hospitals or continuing care facilities. This paper outlines the end-of-life care of adult inpatients who died that year in four such facilities (n = 137). CPR was an infrequent end-of-life treatment modality (2.9%), in stark contrast to the extensive use of o...
journal_title：Journal of palliative care
pub_type： 杂志文章,多中心研究
doi：
更新日期：1997-01-01 00:00:00
abstract：:In traditional Chinese culture, death was sensitive and mentioning it was sacrilegious and to be avoided. Many Chinese families object to telling the patient a "bad" diagnosis or prognosis, which may hinder the chance in advance care planning (ACP) discussion. While death remains an inevitable consequence of being bor...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859718763644
更新日期：2018-10-01 00:00:00
abstract：:Comfort care for cancer patients in the terminal stage has been the goal of hospice programs since their inception. Among the many treatment modalities available to homebound patients, transfusions have been little studied for their effects on advanced disease symptoms, particularly for those in the terminal phase. Ou...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：1993-10-01 00:00:00
abstract：:Historically, health and social care professionals have described their lack of competence and confidence in many aspects of palliative care, and have recognized the need for increased educational opportunities, where new skills can be acquired and existing knowledge consolidated. Redressing these omissions has led to...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2001-07-01 00:00:00
abstract：:Informal hospice caregivers play a key role in managing patients' pain at home, but lack of adherence to doctor-prescribed analgesic regimens and medication errors are significant barriers to truly effective pain management. A digital pain diary may improve caregiver management of pain at home; however, most digital p...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859717722466
更新日期：2017-04-01 00:00:00
abstract：BACKGROUND:The Patient Self-Determination Act (PSDA) requires hospitals, home health agencies, nursing homes, and hospice providers to offer new patients information about advance directives. There is little evidence regarding whether encounters with these health-care providers prompt advance directive completion by pa...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859718769099
更新日期：2018-07-01 00:00:00
abstract：:The conduct of psychosocial research with palliative care patients or staff presents a major investigative challenge. The fragility of patients and their physical or cognitive limitations severely curtail the types of studies that are possible and the research methods that can be applied. A major limitation is that ra...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：1989-12-01 00:00:00
abstract：UNLABELLED:In Poland, medical curricula cover palliative care for adults, not for children. This paper evaluates feedback of students who participated in a pilot pediatric palliative care education program. METHOD:An anonymous questionnaire was designed for the students; they were asked to assess each aspect of the pr...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2012-01-01 00:00:00
abstract：BACKGROUND:Patients with advanced chronic obstructive pulmonary disease (COPD) have a significant symptom burden despite maximal medical therapy, yet few are referred for concomitant palliative care. OBJECTIVE:To evaluate the utilization and impact of palliative care on the location of death and to identify clinical v...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859719851486
更新日期：2019-07-02 00:00:00
abstract：:The study assessed the components of high-quality HIV palliative care using the multidimensional model of quality assessment developed by Maxwell (4). Data collection consisted of interviews with individual subjects and focus groups. The interviews took place in three London health authorities. Seven service users and...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：1999-01-01 00:00:00
abstract：:This paper addresses the music therapy process specific to one subgroup of the general population identified as having terminal illness. This subgroup includes individuals who are impoverished, homeless, and do not have someone to provide them with care at the end of life. Based upon her clinical work at Malachi House...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2001-10-01 00:00:00
abstract：:With recent changes in health care there is greater emphasis on providing care at home, including the support of families to enable more home deaths. Since a home death may not be practical or desirable in every family situation, there is a need for an objective way to assess the viability of a home death in each indi...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2000-04-01 00:00:00
