Abstract:
:Little is known about the lived health-care experiences of persons living with palliative stage Parkinson's disease and the family members who care for them. An exploratory phenomenological investigation was adopted to understand participant's lived health-care experiences and the needs flowing from them. Three family groupings participated in semi-structured in-depth interviews. Interpretative phenomenological analysis revealed three main themes: missing information, being on your own, wanting and not wanting to know. Findings support previous research that indicate palliative care needs are not being met in our current health-care model and that palliative care services should be multi-disciplinary team-based in order to provide comprehensive support to patients and families. Based on this current work, we are currently undertaking a comprehensive quantitative-based multi-disciplinary health-care service needs assessment of palliative stage PD patients with the goal to implement expanded services.
journal_name
Palliat Medjournal_title
Palliative medicineauthors
Giles S,Miyasaki Jdoi
10.1177/0269216308100773subject
Has Abstractpub_date
2009-03-01 00:00:00pages
120-5issue
2eissn
0269-2163issn
1477-030Xpii
0269216308100773journal_volume
23pub_type
杂志文章abstract::This study compares terminally ill patients and their family caregivers in terms of the physical and emotional status of the patients, the adequacy of the support provided for the patients and where the patients would be most appropriately placed during the last stage of their lives. Patients and caregivers shared sim...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639300700204
更新日期:1993-01-01 00:00:00
abstract::It is important to support general practitioners (GPs) in maintaining and developing their palliative care skills as most of the final year of a patient's life is spent at home under the care of the primary health care team. The training needs and uptake of GPs have been explored, but little is known about how GP educ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921601678576176
更新日期:2001-05-01 00:00:00
abstract:BACKGROUND:Of deaths in high-income countries, 75% are caused by progressive advanced chronic conditions. Palliative care needs to be extended from terminal cancer to these patients. However, direct measurement of the prevalence of people in need of palliative care in the population has not been attempted. AIM:Determi...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313518266
更新日期:2014-04-01 00:00:00
abstract::The main focus of palliative care services is to improve patients' quality of life (QOL). The potential value of assessment of QOL in palliative care is being increasingly recognized. The McGill Quality of Life questionnaire (MQOL) is designed specifically for palliative care patients, but its cross-cultural validity ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921601680419438
更新日期:2001-09-01 00:00:00
abstract:OBJECTIVES:To identify and explore the educational needs of children's hospice doctors in England. DESIGN:A descriptive quantitative and qualitative survey. SETTING:Children's hospices in England. PARTICIPANTS:All children's hospice doctors (n =55) in England were approached, and 35 (65%) consented. INTERVENTIONS:A...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216304pm902oa
更新日期:2004-12-01 00:00:00
abstract:BACKGROUND:The WHO definitions of palliative care have been adopted in Denmark and implemented in The National Guidelines from 1999, but service developments have been very slow and not according to the recommendations. Attitudes to palliative care of Danish doctors and nurses may in part account for this. OBJECTIVE:T...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216305pm988oa
更新日期:2005-03-01 00:00:00
abstract::Access to palliative care (PC) is a major need worldwide. Using hospital charts of all patients who died over one year (April 2008-March 2009) in two mid-sized hospitals of a large Canadian city, similar in size and function and operated by the same administrative group, this study examined which patients who could be...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311408992
更新日期:2012-01-01 00:00:00
abstract::The aim of this study is to synthesize knowledge about the process of shared decision-making (SDM) in palliative care. Medline, EMBASE, CINAHL, PsychInfo, Web of Science were searched with core concepts: shared decisions, patient participation in decision-making, and palliative care. Titles and abstracts were screened...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216310389348
更新日期:2011-04-01 00:00:00
abstract:BACKGROUND:End-of-life implantable cardioverter defibrillator deactivation discussions should commence before device implantation and be ongoing, yet many implantable cardioverter defibrillators remain active in patients' last days. AIM:To examine associations among implantable cardioverter defibrillator knowledge, pa...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216317718438
更新日期:2018-01-01 00:00:00
abstract:BACKGROUND:Patient misunderstandings about prognosis may be related to lack of communication. AIM:This study aimed to examine prognosis discussions held with hospitalized patients for whom palliative care consultations were requested, and if prognosis discussions did not occur, to explore why not. DESIGN:This was a s...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313514126
更新日期:2014-04-01 00:00:00
abstract:BACKGROUND:Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. AIM:To conceptualize the psychosocial processes involved in the introduction and provision of palliative care ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319883980
更新日期:2020-02-01 00:00:00
abstract::Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216309359996
更新日期:2010-07-01 00:00:00
abstract:BACKGROUND:Approximately one-third of rapid response team consultations involve issues of end-of-life care. We postulate a greater occurrence in patients with a life-limiting illness, in whom the opportunity for advance care planning and palliative care involvement should be offered. AIMS:We aim to review the characte...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216314560802
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:Intrathecal drug delivery is known to be effective in alleviating cancer pain in patients for whom the conventional World Health Organization approach has proved insufficient. A multidisciplinary interventional cancer pain service was established in the West of Scotland in 2008 with the aim of providing a sa...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216315570514
更新日期:2015-06-01 00:00:00
abstract::Using Grounded Theory, this study examines the experience of 19 palliative care chaplains in counselling dying people. Taking a broad-based definition of counselling, and using unstructured individual interviews and group work, the study aimed to understand how palliative care chaplains work with patients at the point...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310380297
更新日期:2011-01-01 00:00:00
abstract:BACKGROUND:While there have been some studies looking at the impact on quality of life of patients with idiopathic pulmonary fibrosis, to date no qualitative research looking at the specialist palliative needs of these patients has been conducted. AIM:This study aims to explore the specialist palliative care needs of ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313497226
更新日期:2013-10-01 00:00:00
abstract::In an era of ever increasing emphasis on cost-effectiveness of health care, and with the introduction of the internal market, there is now an urgent need for information on the costs and quality of palliative care. This paper highlights the complexities involved in acquiring and measuring such information and discusse...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639400800402
更新日期:1994-10-01 00:00:00
abstract::Parenteral administration of mixtures of morphine with other drugs has become common practice in palliative care. Such mixtures are sometimes found to be incompatible but compatibility data are scarce. An attempt was made to develop a quick and simple investigation strategy to obtain complete information on the compat...
journal_title:Palliative medicine
pub_type: 指南,杂志文章,实务指引
doi:10.1191/0269216302pm542oa
更新日期:2002-09-01 00:00:00
abstract::This retrospective clinical study reports on the experience of palliative venting gastrostomy (PVG) in an integrated acute teaching hospital and hospice-based palliative care service over a seven-year period (1989-97). PVG was performed for 51 patients with refractory nausea and vomiting resulting from varying degrees...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216302pm590oa
更新日期:2002-11-01 00:00:00
abstract:BACKGROUND:Population ageing will lead to more deaths with an uncertain trajectory. Identifying patients at risk of dying could facilitate more effective care planning. AIM:To determine whether screening for likely death within 12 months is more effective using screening tools or intuition. DESIGN:Randomised controll...
journal_title:Palliative medicine
pub_type: 杂志文章,随机对照试验
doi:10.1177/0269216317698621
更新日期:2018-02-01 00:00:00
abstract:BACKGROUND:Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. AIM:To systematically review resear...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216321989565
更新日期:2021-01-25 00:00:00
abstract:BACKGROUND:There is increasing demand for primary care practitioners to play a key role in palliative care delivery. Given this, it is important to understand their perceptions of the barriers and enablers to optimal palliative care, and how commonly these are experienced. AIM:To explore the type and prevalence of bar...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319865414
更新日期:2019-10-01 00:00:00
abstract:BACKGROUND:No systematic meta-analysis is available on the prevalence of cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. AIM:To examine the prevalence of advanced/terminal cancer patients' accurate pro...
journal_title:Palliative medicine
pub_type: 杂志文章,meta分析,评审
doi:10.1177/0269216316663976
更新日期:2017-05-01 00:00:00
abstract::Separate accounts of care were recorded weekly from staff, patients and relatives in a randomised sample of patients with terminal cancer referred to a home care service with readily available beds. Various services were involved but nurses made most contacts, 3.0 visits and 2.4 phone calls weekly, rising sharply in t...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639601000207
更新日期:1996-04-01 00:00:00
abstract::To date, the experiences of out-of-hours general practitioners with regard to palliative care patients and their management are yet to be evaluated, since the new General Medical Services contract came into force. In 2007 the National Institute for Health Research highlighted the need to identify factors that improve ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310368580
更新日期:2010-07-01 00:00:00
abstract::A survey of all district health authorities in England was conducted in order to describe current patterns of needs assessment and contract setting for palliative care services. Outcome measures included the completion of needs assessments in the past five years, the type of data used for needs assessment, and recomme...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639500900403
更新日期:1995-10-01 00:00:00
abstract:BACKGROUND:The perspectives of patients and relatives are important in the improvement of the quality of health care. However, the quality of end-of-life care has not been systematically evaluated in Scandinavia. AIM:To develop or adapt and subsequently validate a questionnaire assessing the quality of end-of-life car...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216317740274
更新日期:2018-04-01 00:00:00
abstract:BACKGROUND:Hospitalizations in patients with metastatic cancer occur commonly at the end of life but have not been well-described in individuals with metastatic breast cancer. AIM:To describe the reasons for admission and frequency of palliative care and hospice utilization in hospitalized patients with metastatic bre...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216316637238
更新日期:2016-10-01 00:00:00
abstract:OBJECTIVE:To summarize available literature containing data on the treatment of depression in palliative care patients. METHODS:A systematic review was conducted using extensive electronic databases and hand searches. All randomized controlled trials (RCTs) of interventions for depression in patients with advanced dis...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1191/0269216302pm570oa
更新日期:2002-07-01 00:00:00
abstract::The Association for Palliative Medicine (APM) produced a previous undergraduate palliative medicine syllabus in 1992. This study describes the process of developing the new APM consensus syllabus against the background of changes in medical education and palliative medicine since 1992. The syllabus was derived by mean...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216308090769
更新日期:2008-06-01 00:00:00