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 people living with end-stage progressive idiopathic fibrotic interstitial lung disease. DESIGN AND SETTINGS/PARTICIPANTS: In total, 18 qualitative semi-structured in-depth interviews were conducted with patients, their informal caregivers and health professionals across two specialist interstitial lung disease centres in London and in the community. RESULTS:Many participants reported uncontrolled symptoms of shortness of breath, cough and insomnia, which profoundly impacted every part of patients' and informal caregivers' lives. Psychologically, patients were frustrated and angry at the way in which their illness severely limited their ability to engage in activities of daily living and compromised their independence. Furthermore, both patients and informal caregivers also reported that the disease seriously affected family relationships where strain was pronounced. There was varied knowledge and confidence among health professionals in managing symptoms, and psychosocial needs were often underestimated. CONCLUSION:This study is the first of its kind to examine in depth the impact of symptoms and psychosocial needs revealing the profound effect on every aspect of progressive idiopathic fibrotic interstitial lung disease patients' and informal caregivers' lives. Education and guidance of appropriate palliative care interventions to improve symptom control are needed. A case conference intervention with individualised care plans may help in addressing the substantial symptom control and psychosocial needs of these patients and informal caregivers.
journal_name
Palliat Medjournal_title
Palliative medicineauthors
Bajwah S,Higginson IJ,Ross JR,Wells AU,Birring SS,Riley J,Koffman Jdoi
10.1177/0269216313497226subject
Has Abstractpub_date
2013-10-01 00:00:00pages
869-76issue
9eissn
0269-2163issn
1477-030Xpii
0269216313497226journal_volume
27pub_type
杂志文章abstract::Dysphagia is a common and distressing problem in motor neurone disease. This paper examines some of the strategies available for managing patients with dysphagia, and illustrates these with four contrasting case histories. The factors which influence the decision making process in patients with dysphagia are also disc...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216393007004S08
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abstract::This study reports the process and results of a psychometric evaluation of a clinical audit tool, the Support Team Assessment Schedule (STAS), used to measure outcomes of palliative care. The STAS was developed in London, UK to audit community palliative care services provided by a support team. The purpose of this st...
journal_title:Palliative medicine
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abstract:BACKGROUND:Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer. AIM:Retro...
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journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921699675854885
更新日期:1999-07-01 00:00:00
abstract::When a person is diagnosed with a severe disease, it seems plausible that existential questions and death anxiety are easily intensified. The aims of this study were to explore whether this is the case, to what extent patients and their next of kin experience death anxiety, and how these experiences are expressed. Fol...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
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abstract:BACKGROUND AND AIMS:Palliative medicine is not recognized as a medical specialty in any of the five Nordic countries, but there is a great need for physicians with specialty qualifications to serve on an increasing number of palliative care services. The Associations for Palliative Medicine in the five countries agreed...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
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更新日期:2008-04-01 00:00:00
abstract:OBJECTIVE:A prospective cohort study evaluated the performance and acceptability of the cognitive based Mood Evaluation Questionnaire (MEQ) in assessing depressive symptoms over time in patients with advanced cancer. The structured clinical interview for DSM-III-R (SCID) and the single-item interview screening question...
journal_title:Palliative medicine
pub_type: 杂志文章
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journal_title:Palliative medicine
pub_type: 杂志文章,已发布勘误
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更新日期:2016-12-01 00:00:00
abstract::The European Association for Palliative Care recommendation for starting morphine for cancer pain is dose titration with immediate release (IR) oral morphine given every 4 h with additionally doses for breakthrough pain. As part of a EU 6th framework programme to revise the guidelines we review the evidence regarding ...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
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更新日期:2011-07-01 00:00:00
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journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
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abstract:BACKGROUND:Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. AIM:To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual mod...
journal_title:Palliative medicine
pub_type: 杂志文章
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abstract::This systematic review evaluates the evidence underpinning the provision of palliative day care services (PDS) to determine whether such services have a measurable effect on attendees' wellbeing. The majority of studies reviewed were qualitative and elicited individual perceptions of the benefits PDS. Although it was ...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
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更新日期:2011-03-01 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
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更新日期:2002-07-01 00:00:00
abstract:BACKGROUND:The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). AIM:To test the reliability and acceptabi...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
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更新日期:2016-05-01 00:00:00
abstract:BACKGROUND:The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. AIM:To explore the experiences of senior medical and nursing staff regarding the challenges a...
journal_title:Palliative medicine
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更新日期:2015-04-01 00:00:00
abstract::Attitudes toward euthanasia differ between individuals and populations, and in many studies the medical profession is more reluctant than the general public. Our goal was to explore medical students' attitude toward euthanasia. A questionnaire containing open-ended questions was answered anonymously by 165 first- and ...
journal_title:Palliative medicine
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更新日期:2007-10-01 00:00:00
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journal_title:Palliative medicine
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更新日期:2013-07-01 00:00:00
abstract:BACKGROUND:Death anxiety is important but understudied in palliative care. New self-report measurements have been developed, but their interpretation and clinical utility may not be evident. AIM:To inform our understanding of death anxiety in patients with advanced cancer by exploring the relationship between this sel...
journal_title:Palliative medicine
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更新日期:2016-09-01 00:00:00
abstract:BACKGROUND:Burn units are intensive care facilities specialized in the treatment of patients with severe burns. As burn injuries have a major impact in physical, psychosocial, and spiritual health, palliative care can be a strengthening component of integrated care. AIM:To review and appraise the existing evidence abo...
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abstract:BACKGROUND:The Liverpool Care Pathway was used in UK hospitals (late 1990s to July 2014) in an attempt to generate hospice-style high-quality end-of-life care in acute settings. Despite being widely established, there was limited research or contextual evidence regarding this approach or its impact. Growing criticism f...
journal_title:Palliative medicine
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journal_title:Palliative medicine
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journal_title:Palliative medicine
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更新日期:1993-01-01 00:00:00
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journal_title:Palliative medicine
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journal_title:Palliative medicine
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更新日期:1996-10-01 00:00:00
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journal_title:Palliative medicine
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journal_title:Palliative medicine
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更新日期:2019-10-01 00:00:00
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journal_title:Palliative medicine
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更新日期:2020-06-01 00:00:00
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