Home care of a child dying of a malignancy and parental awareness of a child's impending death.

Abstract:

:In this population-based study, we found that parents who are aware that their child will die from a malignancy are more likely to care for their child at home during the child's last month of life compared to parents who are not aware. End-of-life home care was comparable to hospital care for satisfactory pain relief, access to pain relief and access to medications for other physical symptoms. Using an anonymous postal questionnaire, we obtained information from 449 parents in Sweden who had lost a child due to a malignancy between 1992 and 1997, 4 to 9 years before participating in our study. The prevalence of dying at home and being cared for at home during the last month of life was 23.7% when parents realized intellectually more than 1 month in advance that the child would die (versus 12% who did not), 28.7% for parents who sensed that the child was aware of his or her imminent death (versus 7.8% who did not sense this) and 21.9% for those who received information that the child's illness was incurable (versus 9.4% who did not receive the information). Prevalence of children's unrelieved pain was 11.6% for those receiving home care and 15.3% for those receiving care outside the home.

journal_name

Palliat Med

journal_title

Palliative medicine

authors

Surkan PJ,Dickman PW,Steineck G,Onelöv E,Kreicbergs U

doi

10.1191/0269216306pm1139oa

subject

Has Abstract

pub_date

2006-04-01 00:00:00

pages

161-9

issue

3

eissn

0269-2163

issn

1477-030X

journal_volume

20

pub_type

杂志文章
  • Clinical research in palliative care: patient populations, symptoms, interventions and endpoints.

    abstract::Clinical trials in palliative care involve multiple issues relating to patient populations, interventions and endpoints. Careful data collection and analysis of variables are vital for good clinical research in this complex area. ...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1191/026921601668441770

    authors: Mazzocato C,Sweeney C,Bruera E

    更新日期:2001-03-01 00:00:00

  • Evidence on the analgesic role of bisphosphonates and denosumab in the treatment of pain due to bone metastases: A systematic review within the European Association for Palliative Care guidelines project.

    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

    authors: Porta-Sales J,Garzón-Rodríguez C,Llorens-Torromé S,Brunelli C,Pigni A,Caraceni A

    更新日期:2017-01-01 00:00:00

  • Review: a narrative review of the published ethical debates in palliative care research and an assessment of their adequacy to inform research governance.

    abstract::The quality of research, and the resulting quality of evidence available to guide palliative care, is dependent on the ethical decisions underpinning its design, conduct and report. Whilst much has been published debating the ethics of palliative care research, an assessment of the quality and synthesis of the central...

    journal_title:Palliative medicine

    pub_type: 杂志文章,评审

    doi:10.1177/0269216309352714

    authors: Duke S,Bennett H

    更新日期:2010-03-01 00:00:00

  • Good end-of-life care in nursing home according to the family carers' perspective: A systematic review of qualitative findings.

    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

    doi:10.1177/0269216319840275

    authors: Gonella S,Basso I,De Marinis MG,Campagna S,Di Giulio P

    更新日期:2019-06-01 00:00:00

  • Vitamin D deficiency and its association with fatigue and quality of life in advanced cancer patients under palliative care: A cross-sectional study.

    abstract:BACKGROUND:A normal vitamin D status is required for bones and muscles to maintain their function and structure, but it also contributes to the functional integrity of other multiple physiologic systems in the body. AIM:To assess the relationship of Vitamin D deficiency with health-related quality-of-life issues, fati...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216315601954

    authors: Martínez-Alonso M,Dusso A,Ariza G,Nabal M

    更新日期:2016-01-01 00:00:00

  • Measuring the quality of end-of-life care: Development, testing, and cultural validation of the Danish version of Views of Informal Carers' Evaluation of Services-Short Form.

    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

    authors: Ross L,Neergaard MA,Petersen MA,Groenvold M

    更新日期:2018-04-01 00:00:00

  • Detection of delirium in palliative care unit patients: a prospective descriptive study of the Delirium Observation Screening Scale administered by bedside nurses.

    abstract:BACKGROUND:The Delirium Observation Screening Scale (DOS) is designed to detect delirium by nurses' observations and has shown good psychometric properties. Its use in palliative care unit patients has not been studied. AIM:To determine diagnostic and concurrent validity, internal consistency, and user-friendliness of...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216313492187

    authors: Detroyer E,Clement PM,Baeten N,Pennemans M,Decruyenaere M,Vandenberghe J,Menten J,Joosten E,Milisen K

    更新日期:2014-01-01 00:00:00

  • Advance Care Planning in palliative care: a qualitative investigation into the perspective of Paediatric Intensive Care Unit staff.

    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

    pub_type: 杂志文章

    doi:10.1177/0269216315573000

    authors: Mitchell S,Dale J

    更新日期:2015-04-01 00:00:00

  • Does being religious help or hinder coping with chronic illness? A critical literature review.

    abstract::This paper reviews a number of studies relating to religion and coping with chronic illness, emphasizing those aspects relevant to palliative care. After pointing out that religious and existential needs are common in chronic illness, a critical examination is made of those studies which purport to demonstrate associa...

    journal_title:Palliative medicine

    pub_type: 杂志文章,评审

    doi:10.1177/026921639701100405

    authors: Dein S,Stygall J

    更新日期:1997-07-01 00:00:00

  • Medicare hospice care in US nursing homes: a 2006 update.

    abstract:INTRODUCTION:This research examines 2006 population-based data on persons who died in US nursing homes (NHs) and received hospice in the NH. METHODS:We compared dying persons characteristics and lengths of hospice stay in five US states between 1992 and 1996 and in 2006. We also compared characteristics of dying perso...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216310389349

    authors: Sterns S,Miller SC

    更新日期:2011-06-01 00:00:00

  • Impact of home-based, patient-centered support for people with advanced illness in an open health system: A retrospective claims analysis of health expenditures, utilization, and quality of care at end of life.

    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

    pub_type: 杂志文章

    doi:10.1177/0269216317711824

    authors: Sudat SEK,Franco A,Pressman AR,Rosenfeld K,Gornet E,Stewart W

    更新日期:2018-02-01 00:00:00

  • Methods for assessment of cognitive failure and delirium in palliative care patients: implications for practice and research.

    abstract::The most commonly encountered clinical conditions presenting with cognitive failure (CF) are delirium, dementia and amnestic disorders. Of these, delirium is probably the most prevalent in palliative care, and it is potentially reversible. Thus, improvement in diagnostics seems warranted. The objectives of this review...

    journal_title:Palliative medicine

    pub_type: 杂志文章,评审

    doi:10.1191/0269216304pm920oa

    authors: Hjermstad M,Loge JH,Kaasa S

    更新日期:2004-09-01 00:00:00

  • Nasogastric feeding in the management of severe dysphagia in motor neurone disease.

    abstract::This paper reviews the experience of managing 31 patients with severe dysphagia in motor neurone disease. Thirteen patients were fed nasogastrically and the remaining 18 were managed conservatively without a nasogastric tube. The introduction of nasogastric feeding led to the development of new problems in some patien...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/026921639400800108

    authors: Scott AG,Austin HE

    更新日期:1994-01-01 00:00:00

  • 'Palliative sedation'? A retrospective cohort study on the use and labelling of continuously administered sedatives on a palliative care unit.

    abstract:BACKGROUND:Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. AIM:To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palli...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216318764095

    authors: Schildmann E,Pörnbacher S,Kalies H,Bausewein C

    更新日期:2018-07-01 00:00:00

  • Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis.

    abstract:BACKGROUND:A study designed to explore the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their carers, particularly with regard to ongoing and palliative care needs. METHODS:The participants were nine men and one woman with severe COPD and the carers of eight of the men, in East ...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1191/0269216304pm928oa

    authors: Seamark DA,Blake SD,Seamark CJ,Halpin DM

    更新日期:2004-10-01 00:00:00

  • How hospice staff members prepare family caregivers for the patient's final days of life: an exploratory study.

    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

    authors: Kehl KA

    更新日期:2015-02-01 00:00:00

  • A qualitative study of clinical nurse specialists' views on depression in palliative care patients.

    abstract::Depression is the most common psychiatric illness in patients with terminal cancer. Depression not only lowers the quality of life for the patients and their families, but patients who are depressed may also have physical symptoms that are difficult to palliate and that improve as their depression is appropriately tre...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1191/0269216303pm747oa

    authors: Lloyd Williams M,Payne S

    更新日期:2003-06-01 00:00:00

  • Systematic review of bisphosphonates for hypercalcaemia of malignancy.

    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

    authors: Saunders Y,Ross JR,Broadley KE,Edmonds PM,Patel S,Steering Group.

    更新日期:2004-07-01 00:00:00

  • Economic evaluation of a combined screening and stepped-care treatment program targeting psychological distress in patients with metastatic colorectal cancer: A cluster randomized controlled trial.

    abstract:BACKGROUND:Psychological distress is highly prevalent among patients with metastatic colorectal cancer. AIMS:To perform an economic evaluation of a combined screening and treatment program targeting psychological distress in patients with metastatic colorectal cancer in comparison with usual care. DESIGN:Societal cos...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216320913463

    authors: El Alili M,Schuurhuizen CSEW,Braamse AMJ,Beekman ATF,van der Linden MH,Konings IR,Dekker J,Bosmans JE

    更新日期:2020-07-01 00:00:00

  • Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study.

    abstract:BACKGROUND:Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, ...

    journal_title:Palliative medicine

    pub_type: 杂志文章,随机对照试验

    doi:10.1177/0269216315588007

    authors: Brännström M,Fürst CJ,Tishelman C,Petzold M,Lindqvist O

    更新日期:2016-01-01 00:00:00

  • Integration of acupuncture into the oncology clinic.

    abstract:PURPOSE/OBJECTIVE:Patients with cancer or symptoms referable to cancer therapy were offered acupuncture as potential palliation of their symptoms. This paper describes the physical integration of the discipline into the Oncology Clinic, and patient perspectives on its availability and efficacy. PATIENTS AND METHODS:Be...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1191/0269216302pm540oa

    authors: Johnstone PA,Polston GR,Niemtzow RC,Martin PJ

    更新日期:2002-05-01 00:00:00

  • Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff.

    abstract:BACKGROUND:The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms ...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216311423443

    authors: Ryan T,Gardiner C,Bellamy G,Gott M,Ingleton C

    更新日期:2012-10-01 00:00:00

  • Cost variations in ambulatory and home-based palliative care.

    abstract::Restructuring health care in Canada has emphasized the provision of ambulatory and home-based palliative care. Acquiring economic evidence is critical given this trend and its tremendous demands on family caregivers. The purposes of this study were: 1) to comprehensively assess the societal costs of home-based palliat...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216310364877

    authors: Guerriere DN,Zagorski B,Fassbender K,Masucci L,Librach L,Coyte PC

    更新日期:2010-07-01 00:00:00

  • Benzonatate for opioid-resistant cough in advanced cancer.

    abstract::Chronic cough is a distressing symptom experienced by approximately 37% of patients with advanced cancer. Palliation of chronic nonproductive cough should always first address the underlying cause but in some patients chronic, nonproductive cough persists and antitussive agents are required. Opioids are the gold stand...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1191/026921698672930910

    authors: Doona M,Walsh D

    更新日期:1998-01-01 00:00:00

  • Continued study of the psychometric properties of the McGill quality of life questionnaire.

    abstract::The McGill Quality of Life Questionnaire (MQOL) is a widely used tool that has been specifically developed to measure the quality of life of patients facing a life-threatening illness. Preferably, a self-report instrument has an equal number of items worded positively and negatively. However, all the psychological sca...

    journal_title:Palliative medicine

    pub_type: 杂志文章,多中心研究

    doi:10.1177/0269216308094519

    authors: Henry M,Huang LN,Ferland MK,Mitchell J,Cohen SR

    更新日期:2008-09-01 00:00:00

  • Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

    abstract:BACKGROUND:Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands i...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/0269216313486954

    authors: Henriksson A,Årestedt K

    更新日期:2013-07-01 00:00:00

  • Safety and efficacy of nebulized lignocaine in patients with cancer and breathlessness.

    abstract::Although anecdotal reports suggest nebulized lignocaine may help breathlessness in patients with cancer this has not been examined formally. We report a pilot study comparing nebulized lignocaine 100 mg and 200 mg with saline in six patients with cancer who were breathless at rest. Nebulized lignocaine was well tolera...

    journal_title:Palliative medicine

    pub_type: 杂志文章

    doi:10.1177/026921639400800106

    authors: Wilcock A,Corcoran R,Tattersfield AE

    更新日期:1994-01-01 00:00:00

  • A new method to obtain and present complete information on the compatibility: study of its validity for eight binary mixtures of morphine with drugs frequently used in palliative care.

    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

    authors: Vermeire A,Remon JP,Schrijvers D,Demeulenaere P

    更新日期:2002-09-01 00:00:00

  • Opioid purchases and expenditure in nine western European countries: 'are we killing off morphine?'.

    abstract:BACKGROUND:In clinical practice the major role of opioid drugs is the management of malignant and nonmalignant pain. The primary aim of this study is to evaluate the trend in sales of four opioid analgesic drugs (codeine, tramadol, morphine, fentanyl), from wholesalers to community pharmacies, as an indicator of opioid...

    journal_title:Palliative medicine

    pub_type: 杂志文章,多中心研究

    doi:10.1191/0269216305pm1002oa

    authors: De Conno F,Ripamonti C,Brunelli C

    更新日期:2005-04-01 00:00:00

  • A case report of dexmedetomidine used to treat intractable pain and delirium in a tertiary palliative care unit.

    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

    authors: Hilliard N,Brown S,Mitchinson S

    更新日期:2015-03-01 00:00:00