Abstract:
:The emphasis of palliative care has been to support both patients and their family caregivers, and to maintain the caregivers' involvement through the patient's illness and death. This study challenges the assumption that people with amyotrophic lateral sclerosis (ALS) and those who care for them at home have a similar view the disease, and experience the problems and needs in the same way as professionals. By interviewing ALS patients and close relatives to ALS patients, and by comparing the quotes from the interviews, some differences between these two groups are revealed. The results of the present study show that ALS patients and close relatives of ALS patients differ in at least five respects: they perceive their needs, and they view, judge, and evaluate the disease, as well as the the process of the disease, in different ways. Furthermore, the study suggests that the patients and their close relatives should be viewed as individuals with their own preferences. Moreover, close relatives need someone in whom to confide, and caregivers have specific needs for support and information.
journal_name
J Palliat Carejournal_title
Journal of palliative careauthors
Bolmsjö I,Hermerén Gsubject
Has Abstractpub_date
2001-01-01 00:00:00pages
236-40issue
4eissn
0825-8597issn
2369-5293journal_volume
17pub_type
杂志文章abstract:BACKGROUND:Socioeconomic disparities in home death have been noted in the literature. Home-based palliative care increases access to home death and has been suggested as a means to decrease these disparities. AIM:Our study examines the association between socioeconomic status and other demographic factors on place of ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859719855020
更新日期:2020-07-01 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:BACKGROUND:Although religiousness is a strong predictor of attitudes towards physician-assisted suicide (PAS), Oregon hospice chaplains express wide variation in their opposition to or support for legalized PAS. We explored factors associated with chaplains' views on PAS. METHODS:A mailed survey to chaplains from 51 O...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2006-07-01 00:00:00
abstract:OBJECTIVE:Practice guidelines indicate that patients who have months to weeks left to live should not be offered chemotherapy. We examined factors associated with clinician-reported poor performance status as determined by the Palliative Performance Scale (PPS) and subsequent initiation of intravenous (IV) chemotherapy...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2014-10-01 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::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:AIM:By examining clinical parameters associated with survival time and analyzing patients' survival times using prognostic scores, this study aimed to provide helpful information related to the treatment of terminal cancer patients. METHODS:We retrospectively reviewed the medical records of 415 inpatients who died in ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2014-04-01 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::This paper presents an overview of a qualitative study of six recently discharged hospice patients, who had experienced at least two episodes of inpatient palliative care and who were interviewed about their experience of care. The resulting data formed a representation--the Circle of Care--with a central theme being ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2001-04-01 00:00:00
abstract::Caregivers are often overwhelmed by the strain of terminal caregiving. We wished to better understand the needs of terminal caregivers and to supply a basis for tailoring interventions to them during caregiving and early bereavement. This report provides a profile of 124 bereaved caregivers interviewed within three mo...
journal_title:Journal of palliative care
pub_type: 杂志文章,多中心研究
doi:
更新日期:1999-04-01 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:BACKGROUND:Despite the central role of hospice in end-of-life care, little is known about the proportion of terminally ill patients referred for hospice and the physician factors associated with hospice referral. METHODS:Cross-sectional data from a self-administered survey of 231 physicians were used to estimate the p...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2000-01-01 00:00:00
abstract::The essential mandate of medicine is the relief of suffering. However, the quest for an integrated model towards a conceptualization of suffering is still ongoing and empirical studies are few. Qualitative inquiry using 31 in-depth interviews and content analysis was carried out between 1999 and 2001 in 26 patients di...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2004-04-01 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::Palliative care is one of the newer health specialties and continues to mature. While there has been remarkable progression of clinical skills and education, there has been a lack of focus on palliative care interdisciplinary leadership or development of leadership skills. This article highlights the importance of int...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859718791427
更新日期:2018-08-16 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:BACKGROUND AND OBJECTIVES:The use of chemotherapy at the end of life in advanced cancer patients has increased and end of life care has become increasingly aggressive. The aim of this study is to evaluate patients receiving chemotherapy in the last 3 months of life and the aggressiveness of end-of-life support of these...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859720946505
更新日期:2020-08-06 00:00:00
abstract::Emergency department (ED) use is a quality-of-care indicator for community-based end-of-life (EOL) care. This study examined ED use by EOL home care clients. The sample included all EOL home care clients who received care from one community care access centre in Ontario, Canada. Information on health was gathered usin...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2011-10-01 00:00:00
abstract::There may be quantitatively more cancer in the developing world, Africa included, than in the developed world. Unlike in the developed world, cancer patients in Africa present for treatment at a late stage and therefore most of them have pain. Yet, the most commonly used modality for treatment of the cancer pain is dr...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:1989-06-01 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:PURPOSE::The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859718812432
更新日期:2019-04-01 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::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::This study used a randomized controlled trial design to investigate the impact of hospice at home (HAH) on caregiver bereavement outcome. Secondary analyses considered the association between bereavement, place of death, and carers' assessment of support. Ninety-six informal carers of patients referred to HAH were sur...
journal_title:Journal of palliative care
pub_type: 临床试验,杂志文章,随机对照试验
doi:
更新日期:2004-07-01 00:00:00
abstract:AIM:The aim of this study was to evaluate the utility of the Edmonton Symptom Assessment System (ESAS-r) Scale on a tertiary palliative care unit. METHOD:There were 92 admitted patients who participated in the study; the scale was administered to those able to participate on day 1 (n = 35, 38 percent), on day 4 (n = 2...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/082585971503100107
更新日期:2015-01-01 00:00:00
abstract::A strong and often polarized debate has taken place during recent years concerning the consequences of dehydration in the terminally ill patient. When a patient has a severely restricted oral intake or is found to be dehydrated, the decision to administer fluids should be individualized and made on the basis of a care...
journal_title:Journal of palliative care
pub_type: 杂志文章,评审
doi:
更新日期:1998-07-01 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
abstract::This article describes two young, potentially curable patients who chose a course of treatment that ultimately resulted in death. Their choice was in part influenced by the prospect of the disfiguring surgery that would have been required for cure. In the first patient this would have meant massive head and neck surge...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:1998-01-01 00:00:00
abstract:AIM:Physical activity (PA) has a positive effect on the cardiorespiratory fitness, lung cancer symptoms, and quality of life of lung cancer patients. The aim of our study was to identify barriers to, and facilitators of PA in lung cancer patients. METHODS:We collected data from five patients diagnosed with primary, ad...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/082585971503100204
更新日期:2015-01-01 00:00:00
abstract:AIM:Little is known regarding the extent to which dying patients with chronic obstructive pulmonary disease (COPD) receive life-sustaining procedures and palliative care in US hospitals. We examined temporal trends and the impact of palliative care on the use of life-sustaining procedures in this population. MATERIALS...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859718777375
更新日期:2018-07-01 00:00:00