Abstract：
BACKGROUND:One challenge for those who manage amyotrophic lateral sclerosis (ALS) is to understand patients' needs. AIM:The aim of this study was to examine the needs of Singapore ALS patients from their perspective as well as that of their caregivers and healthcare professionals in order to develop a template for better services. METHODS:A cross-sectional qualitative study was conducted, with one-to-one interviews and focus group discussions. RESULTS:All 30 participants, key stakeholders in the field of caring for ALS patients, identified these needs categories: psychological--diagnosis must be staged and comfortably paced, and efforts must be made to encourage patients' resilience; social--positive relationships, open communication, and spiritual support must be developed; physical--attention should be paid to alleviating discomfort and disability; and environmental--appropriate services should be made available. CONCLUSION:The identified needs categories do overlap, but there are significant differences. Our findings provide a template for developing individualized patient services, which should be done within the framework of a comprehensive palliative care program.
journal_name
J Palliat Carejournal_title
Journal of palliative careauthors
Ang K,Umapathi T,Tong J,Ng J,Tseng LJ,Woo IMdoi
10.1177/082585971503100304subject
Has Abstractpub_date
2015-01-01 00:00:00pages
150-7issue
3eissn
0825-8597issn
2369-5293journal_volume
31pub_type
杂志文章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：: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：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：:COVID-19 has stressed the healthcare system in ways our society has not seen before. Less visibly, elderly patients and their caregivers have been stressed as well, both by the virus and by the public health measures required to slow its spread. After months of isolating, patients with dementia and their caregivers ar...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859720984567
更新日期：2021-01-12 00:00:00
abstract：PURPOSE:To evaluate the perception of attending physicians, medical residents, and undergraduate medical students about death and dying, the end of life (EoL), and palliative care (PC) during training and clinical practice, highlighting knowledge gaps, and the changes needed in medical school curricula. METHOD:Cross-s...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859720923435
更新日期：2020-05-10 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：: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：: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：:Professional caregivers for cancer patients are at high risk for work-related stress, but it is not clear how this relates to exposure to death and dying, and to professional satisfaction. This study compares work-related stress and staff satisfaction on an academic acute palliative care unit (PCU) with that on a medi...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2007-04-01 00:00:00
abstract：:The principle of double effect is widely used to permit the administration of narcotics and sedatives with the intent to palliate dying patients, even though the administration of these drugs may cause hastening of death. In recent medical literature, this principle's validity has been severely criticized, causing hea...
journal_title：Journal of palliative care
pub_type： 杂志文章,评审
doi：
更新日期：2000-10-01 00:00:00
abstract：:Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality and disability worldwide. For many patients, maximal therapy for COPD produces only modest relief of disabling symptoms and these symptoms result in a significantly reduced quality of life. Despite the high morbidity and mortality, patients w...
journal_title：Journal of palliative care
pub_type： 杂志文章,评审
doi：
更新日期：2005-10-01 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：: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：:Paramedics play an important role in out-of-hospital health care. They provide unscheduled care, assisting both patients with minor injuries and those experiencing life-threatening emergencies. Increasingly, paramedics are called on to manage chronic and complex health needs, including symptom relief for patients at t...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2012-04-01 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：: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：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：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：: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：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：:When dying patients are young adults or have a contagious disease, nursing staff may feel acutely uncomfortable and the patients may become isolated and alone. Nurses who work in palliative care units (PCU) develop special interactive skills that are generally acknowledged but not clearly defined or understood. Admiss...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：1991-04-01 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：: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：:This article examines the intersection between masculinity, military culture, and hospice and palliative care (HPC). The authors conducted a narrative literature review, supplemented with clinical annotations, to identify the impact of masculinity and military culture on the following topics salient to end-of-life car...
journal_title：Journal of palliative care
pub_type： 杂志文章,评审
doi：10.1177/0825859719851483
更新日期：2020-04-01 00:00:00
abstract：:This retrospective study compared 100 consecutive non-cancer (NC) patients referred to a palliative care consult team (PCT) in a Swiss university hospital to 506 cancer (C) patients referred during the same period. The frequencies of reported symptoms were similar in both groups. The main reasons for referral in the N...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：2009-07-01 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：:The Regional Palliative Care Unit in Ottawa conducted a retrospective study to determine how satisfied patients and families were with the service the Unit offers. Forty-five primary care providers, bereaved from 6 to 12 months, completed the 64-item semistructured telephone interview in a mean time of 20 minutes. The...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：1992-01-01 00:00:00
abstract：BACKGROUND:Advance care planning is not well implemented in Belgian hospital practice. In order to obtain successful implementation, implementation theory states that the adopters should be involved in the implementation process. This information can serve as a basis for creating better implementation strategies. AIM:...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：10.1177/0825859720938583
更新日期：2020-10-01 00:00:00
abstract：:Daily care involving proximity with a malodorous patient in the terminal stage of cancer has often proved difficult for the caregiver. Whatever the cause of the primary cancer, three sources of noxious odor can exist or coexist: necrosis, superinfection, and perspiration and/or discharge. The proposed treatment calls ...
journal_title：Journal of palliative care
pub_type： 杂志文章
doi：
更新日期：1991-01-01 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
