Abstract:
OBJECTIVES:This paper examined the potential of a new classification framework, The Spectrum of Children's Palliative Care Needs, to facilitate identification of children with palliative care needs for the purposes of minimum data set collection and population needs assessment. METHODS:Health and social care professionals (n=50) in a range of paediatric palliative care settings applied The Spectrum to (i) clinical vignettes and (ii) consecutive children on their caseloads. They also provided confidence ratings and written comments about their experiences. Inter-rater reliability, conceptual validity, acceptability, feasibility and sustainability were examined. A subset of professionals (n=9) also participated in semistructured telephone interviews to provide further insight. RESULTS:Inter-rater reliability for the vignettes (κ=0.255) was fair. However, professionals were more confident applying The Spectrum to their caseloads, which included children (n=74) with a range of life-limiting/life-threatening conditions. The Spectrum made conceptual sense in relation to these children and was considered to offer a meaningful way to define the eligible population in service mapping. Benefits for clinical work (eg, facilitating patient review, workload management, clinical audit) and research were also identified. However, important threats to reliability were highlighted. CONCLUSIONS:Preliminary assessment of The Spectrum confirms its potential to promote consistent data set collection in children's palliative care. The results have been used to produce a revised version and user guidelines to address issues raised by participants. However, further research is required to further validate the framework and establish its relevance to families' self-defined needs.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Shaw KL,Brook L,Mpundu-Kaambwa C,Harris N,Lapwood S,Randall Ddoi
10.1136/bmjspcare-2012-000407subject
Has Abstractpub_date
2015-09-01 00:00:00pages
249-58issue
3eissn
2045-435Xissn
2045-4368pii
bmjspcare-2012-000407journal_volume
5pub_type
杂志文章abstract:BACKGROUND:Non-invasive ventilation (NIV) is beneficial for respiratory failure in motor neurone disease (MND) but some patients may wish to stop the intervention. Guidance from the National Institute for Health and Care Excellence recommends that research is needed on NIV withdrawal. There is little in the literature ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2013-000470
更新日期:2014-03-01 00:00:00
abstract:BACKGROUND:Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals' perspectives. METHODS:A survey st...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002148
更新日期:2020-06-19 00:00:00
abstract:OBJECTIVES:This paper reports on qualitative data exploring the experiences and coping mechanisms of medical specialists from the specialties of intensive care, surgery, oncology and palliative care, when dealing with death and dying and their emotional connection with dying patients in the context of a life-threatenin...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000208
更新日期:2012-09-01 00:00:00
abstract:BACKGROUND:Malignant pleural effusion (MPE) results in breathlessness and impairment of health-related quality of life (HRQOL). This study reviews the existing literature on HRQOL following invasive interventions in MPE. METHODS:Five electronic databases were systematically searched and assessed three times during the...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001610
更新日期:2020-03-01 00:00:00
abstract:OBJECTIVES:Report the use of an objective tool, UK Gold Standards Framework (GSF) criteria, to describe the prevalence, recognition and outcomes of patients with palliative care needs in an Australian acute health setting. The rationale for this is to enable hospital doctors to identify patients who should have a patie...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000864
更新日期:2019-03-01 00:00:00
abstract:OBJECTIVE:This study investigated the preferences of patients, family and staff for single or shared rooms in a UK hospice. METHOD:Semistructured interviews were conducted with patients, informal carers and staff at a hospice, focusing on room type preference. RESULTS:14 current and former hospice inpatients, 15 pati...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2013-000514
更新日期:2015-06-01 00:00:00
abstract:OBJECTIVES:Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002025
更新日期:2019-11-20 00:00:00
abstract:CONTEXT:Patients with chronic cancer pain frequently suffer severe exacerbations of pain intensity which are difficult to control adequately via pharmaceutical management. Management of these episodes of breakthrough pain (BTP) presents a challenge both to the physician and the patient, and supplemental 'rescue' doses ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2011-000066
更新日期:2011-12-01 00:00:00
abstract:OBJECTIVES:Loss of appetite is prevalent in palliative care and distressing for patients and families. Therapies include corticosteroids or progestogens. This study explores the net effect of dexamethasone on anorexia. METHODS:Prospective data were collected when dexamethasone was started for anorexia as part of routi...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001037
更新日期:2016-09-01 00:00:00
abstract::The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,随机对照试验
doi:10.1136/bmjspcare-2016-001288
更新日期:2019-03-01 00:00:00
abstract:BACKGROUND:The role of the Community Matron was introduced in 2005 (DoH 2005a) to case-manage those patients deemed as very high intensity service users to prevent and reduce unscheduled admission to secondary care. Related studies on the effectiveness of managed care indicated the need to manage the demand of high ser...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.84
更新日期:2015-04-01 00:00:00
abstract:OBJECTIVES:This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provokin...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2013-000629
更新日期:2014-06-01 00:00:00
abstract::Adrenocortical carcinoma (ACC) comprises approximately 0.02% of all malignant tumours, which are a very small fraction of a group of cancers that affect in 0.7 to 2 in 1 000 000 people per year. Recurrence is very common even after complete resection and prognosis is poor. We report a case of a sporadic form of ACC fo...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001568
更新日期:2019-03-01 00:00:00
abstract:BACKGROUND:Undergraduate teaching currently fails to adequately prepare doctors to deliver 'end-of-life' care. Despite much evidence supporting simulation-based teaching, its use in medical undergraduate palliative and 'end-of-life' care curricula remain low. AIM:This study assesses whether simulation can improve the ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001853
更新日期:2019-08-28 00:00:00
abstract:BACKGROUND:The unprecedented scale of contemporary migration across countries over the last decade means that ageing and dying occur in a more globalised, multicultural context. It is therefore essential to explore the end-of-life experiences of older people from migrant backgrounds. METHODS:A scoping review of peer-r...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2020-002617
更新日期:2020-12-09 00:00:00
abstract:BACKGROUND:Over time, palliative care has become "professionalised", placing a burden on health care systems to manage the suffering of individuals and families with advancing, life-limiting illness. The need to develop resources, infrastructure and policy to enhance the capacity for communities to facilitate and suppo...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.58
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:Health promoting palliative care began in Victoria, Australia and has been included in Victorian palliative care policy for over a decade. AIM:To review the way Victorian palliative care services have responded to government policies and strategic directions that are based upon health promoting palliative c...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.48
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:Randomised controlled trials (RCTs) of palliative care interventions are challenging to conduct and evaluate. Tools used to judge the quality of RCTs do not account for the complexities of conducting research in seriously ill populations and may artificially downgrade confidence in palliative care research. ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002539
更新日期:2020-11-18 00:00:00
abstract:BACKGROUND AND OBJECTIVES:Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL ca...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002211
更新日期:2020-07-06 00:00:00
abstract:OBJECTIVES:To report the results of a combined case series analysis of subcutaneous levetiracetam (Keppra) for the management of seizures in palliative care patients. METHODS:A comprehensive literature review on the use of subcutaneous levetiracetam was performed, and these data were combined with a prospective observ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2016-001261
更新日期:2018-06-01 00:00:00
abstract:OBJECTIVES:Referral to, and usage of, specialist palliative care (SPC) services are not equitable and social deprivation may be a contributory factor in this. Deprivation may also affect the place of death of patients with cancer. No study, however, has investigated whether inequalities persist following referral to SP...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2016-001099
更新日期:2018-12-01 00:00:00
abstract:BACKGROUND:Many scholars claim that recent changes to Chinese society since economic reform have challenged longstanding forms of informal social care, such as filial piety. For instance there is a societal tension at work in contemporary Chinese society today. On the one hand decreasing co-residence in multi-generatio...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.2
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:Compared with the current inpatient consultation model, a novel corounding model of care whereby palliative specialists round with oncology teams, increases healthcare collaboration and may improve quality of care for inpatients. Whether this translates to better pain control for patients is unexplored. OBJ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002540
更新日期:2020-12-18 00:00:00
abstract:OBJECTIVES:Patients with advanced cancer do not report all symptoms, so assessment is best done systematically. However, for such patients, completion rates of some symptom instruments are <50%. Symptoms can be quantified by various scales including the Categorical Response Scale (CRS), Numerical Rating Scale (NRS) and...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001018
更新日期:2018-06-01 00:00:00
abstract:OBJECTIVE:To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD:Cross-sectional survey using a web-based questionnaire. SETTING:UK specialist paediatric palliative care services. PARTICIPANTS:Volunteer managers/coordinators fro...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000355
更新日期:2015-09-01 00:00:00
abstract:BACKGROUND:Recruitment and training of Companion Volunteers has developed out of a Companion Sitter Training Programme begun in 2010. (Scottish Journal of Healthcare Chaplaincy Vol 15. No 1, 2012). This programme was established to support patients emotionally and spiritually. While other services were available to off...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.64
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:There has been a dramatic increase in liver disease over recent decades, with morbidity and mortality rates predicted to rise significantly. In order to effectively support this growing patient population we need to understand the experiences, key issues and priorities of people living and dying with advance...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2012-000435
更新日期:2015-12-01 00:00:00
abstract:OBJECTIVES:To identify those factors which adversely affected recruitment to a large multicentre palliative care study. METHODS:Patient accrual to a multicentre, observational, palliative care study was monitored at three critical junctures in the research process. (1) Eligibility-did the patient fulfil the study entr...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,多中心研究
doi:10.1136/bmjspcare-2012-000396
更新日期:2013-09-01 00:00:00
abstract:BACKGROUND:Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregiver...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.8
更新日期:2015-04-01 00:00:00
abstract::Conscience objection is a proposed way of ensuring that medical practitioners who object to physician-assisted suicide may avoid having to be involved in such a procedure if this is legalised. This right on the part of healthcare professionals already exists in certain circumstances. This paper examines the ethical an...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001541
更新日期:2019-12-01 00:00:00