Abstract:
BACKGROUND:Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance. AIMS:To identify recent empirical research on decision-making regarding care and treatment in adolescent cancer: (1) to synthesise evidence to define the role of adolescents, parents and healthcare professionals in the decision-making process and (2) to identify gaps in research. DESIGN:A narrative systematic review of qualitative, quantitative and mixed-methods research. We adopted a textual approach to synthesis, using a theoretical framework of interactionism to interpret findings. DATA SOURCES:The databases MEDLINE, PsycINFO, SCOPUS, EMBASE and CINHAL were searched from 2001 through May 2015 for publications on decision-making for adolescents (13-19 years) with cancer. RESULTS:Twenty-eight articles were identified. Adolescents and parents initially find it difficult to participate in decision-making due to a lack of options in the face of protocol-driven care. Parent and adolescent preferences for information and response to loss of control vary between individuals and over time. No studies indicate parental or adolescent preference for a high degree of independence in decision-making. CONCLUSION:Striving to make parents and adolescents fully informed or urge them towards more independence than they prefer may add to distress and confusion. This may interfere with their ability to participate in their preferred way in decisions about care and treatment. Future research should include analysis of on-ground interactions among parents, adolescents and clinicians across the trajectory.
journal_name
Palliat Medjournal_title
Palliative medicineauthors
Day E,Jones L,Langner R,Bluebond-Langner Mdoi
10.1177/0269216316648072subject
Has Abstractpub_date
2016-12-01 00:00:00pages
920-934issue
10eissn
0269-2163issn
1477-030Xpii
0269216316648072journal_volume
30pub_type
杂志文章,评审abstract::E-technology is increasingly used in oncology to obtain self-reported symptom assessment information from patients, although its potential to provide a clinical monitoring tool in palliative care is relatively unexplored in the UK. This study aimed to evaluate the support provided to lung cancer patients post palliati...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311399489
更新日期:2011-10-01 00:00:00
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
pub_type: 杂志文章
doi:10.1191/026921600677786382
更新日期:2000-01-01 00:00:00
abstract::This paper presents a qualitative study exploring the meaning of 'dignity' to patients, relatives and professionals. It examines the impact of advanced illness and treatment and the issues pertinent to caring for dignity. Depth interviews were conducted with eight patients, six relatives and seven members of the multi...
journal_title:Palliative medicine
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doi:10.1191/0269216303pm699oa
更新日期:2003-04-01 00:00:00
abstract::Medical training teaches physicians to sit when breaking bad news, though there have been no controlled studies to support this advice. We aimed to establish cancer patients' preference for physician posture when physicians break bad news using a randomized controlled crossover trial in a department of palliative care...
journal_title:Palliative medicine
pub_type: 杂志文章,随机对照试验
doi:10.1177/0269216307081184
更新日期:2007-09-01 00:00:00
abstract:OBJECTIVES:To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. DATA SOURCES:Seven electronic databases were searched for the period January 1994--November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metal...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216307085343
更新日期:2008-03-01 00:00:00
abstract::The presence of cognitive impairment in patients who are receiving hospice care can affect numerous practical, ethical and legal aspects of their healthcare. A number of factors can contribute to cognitive impairment in these patients. Prevalence rates of cognitive impairment vary widely, but it remains under-recognis...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216308096907
更新日期:2008-10-01 00:00:00
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
doi:10.1177/0269216310381796
更新日期:2011-03-01 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:People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interve...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319900141
更新日期:2020-04-01 00:00:00
abstract::Cyclizine is an antihistamine, which is frequently used to manage nausea and vomiting in cancer patients. Antihistamines can be drugs of misuse/abuse, and the article describes four cancer patients who developed such problems after receiving parenteral cyclizine within the inpatient unit of a cancer centre. The articl...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216308094337
更新日期:2008-10-01 00:00:00
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
doi:10.1177/0269216307087320
更新日期:2008-04-01 00:00:00
abstract::Enabling patients to be cared for in their preferred location often involves journeys between care settings. The challenge of ensuring journeys are timely and safe emerged as an important issue in an evaluation of palliative care services, which informed a service redesign programme in three areas of the United Kingdo...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216309106893
更新日期:2009-12-01 00:00:00
abstract::A system of 12-hour nursing shifts was adopted at a newly-opened independent hospice. This paper presents the results from an exploratory, descriptive study in which nursing staff reported perceived advantages, disadvantages and satisfaction with the 12-hour shift system. A small sample (n = 11) of both qualified and ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639500900206
更新日期:1995-04-01 00:00:00
abstract:BACKGROUND:There is widespread agreement that the families of hospice patients need to be prepared for the final days of life, yet current practices preparing families are not well described. Examining the gap between family needs and current practice will inform the development of effective preparatory interventions. ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216314551320
更新日期:2015-02-01 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::This paper describes the development and content of palliative care residential workshops for general practitioner/district nurse pairs from the same practice. Pre- and post-testing self-rating scales were completed by the participants of five workshops. A retrospective questionnaire identified perceived effects on pr...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639300700103
更新日期:1993-01-01 00:00:00
abstract:BACKGROUND:This case report describes an end-stage cancer patient with intractable neuropathic pain and delirium who was successfully managed during the last 3 weeks of her life with a continuous subcutaneous infusion of dexmedetomidine. CASE PRESENTATION:A 55-year-old woman with locally advanced cervical cancer and u...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216314556923
更新日期:2015-03-01 00:00:00
abstract::The word 'euthanasia' has been used with a variety of meanings, all of which refer to one precise action: the killing of a suffering person. A moral evaluation of such an act can lead us either to condemn it a priori, shutting the door upon any argument, or to allow further discussion. But the issue must be discussed,...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639300700304
更新日期:1993-01-01 00:00:00
abstract:BACKGROUND:Bisphosphonates are the treatment of choice for hypercalcaemia of malignancy (HCM) but there is no consensus regarding which drug or dose should be given. We designed a systematic review to investigate the efficacy of bisphosphonates in the treatment of HCM. METHODS:We identified randomized controlled trial...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1191/0269216304pm914ra
更新日期:2004-07-01 00:00:00
abstract:BACKGROUND:Although integrated care for existential suffering is an essential part of palliative care, little is known about its concept and efficacy as perceived by professionals. A questionnaire survey was carried out to 1) explore the underlying structure of psychosocial interventions recommended by specialists, 2) ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216303pm825oa
更新日期:2003-12-01 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
pub_type: 杂志文章
doi:10.1177/0269216307081940
更新日期:2007-10-01 00:00:00
abstract::The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, S...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
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更新日期:2000-07-01 00:00:00
abstract:BACKGROUND:Home-based care coordination and support programs for people with advanced illness work alongside usual care to promote personal care goals, which usually include a preference for home-based end-of-life care. More research is needed to confirm the efficacy of these programs, especially when disseminated on a...
journal_title:Palliative medicine
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doi:10.1177/0269216317711824
更新日期:2018-02-01 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
pub_type: 杂志文章
doi:10.1177/0269216316628780
更新日期:2016-09-01 00:00:00
abstract::Philip J Larkin, Fliss Murtagh, Heather Richardson, Myra Bluebond Langner and Sheila Payne (2016) Collaboration: Securing a future for palliative care research. Palliative Medicine, September 2016 30:8 709-710, doi: 10.1177/0269216316661970. ...
journal_title:Palliative medicine
pub_type: 杂志文章,已发布勘误
doi:10.1177/0269216316672799
更新日期:2016-12-01 00:00:00
abstract::The Research Network of the European Association for Palliative Care (EAPC) performed a survey of 3030 cancer patients from 143 palliative care centres in 21 European countries. The survey addressed pain intensity and the use of non-opioid analgesics, adjuvant analgesics and opioids. Patients were treated with analges...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1191/0269216305pm1054oa
更新日期:2005-09-01 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
doi:10.1177/0269216315613904
更新日期:2016-05-01 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::Attitudes to companion animals were surveyed among 50 patients and staff at a day care hospice. Dog visits were welcomed by all but two. Of the 37 patients studied, only seven had a companion animal, often their closest companion. Many more would like to keep an animal, but were prevented by age, frailty or accommodat...
journal_title:Palliative medicine
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更新日期:1996-10-01 00:00:00
abstract:BACKGROUND:Bisphosphonates and denosumab are well-established therapies to reduce the frequency and severity of skeletal-related events in patients with bone metastasis. However, the analgesic effect of these medications on bone pain is uncertain. AIM:To identify, critically appraise and synthesize existing evidence t...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216316639793
更新日期:2017-01-01 00:00:00