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 from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). MAIN OUTCOMES:Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting. RESULTS:A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. CONCLUSIONS:This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Burbeck R,Low J,Sampson EL,Scott R,Bravery R,Candy Bdoi
10.1136/bmjspcare-2012-000355subject
Has Abstractpub_date
2015-09-01 00:00:00pages
287-93issue
3eissn
2045-435Xissn
2045-4368pii
bmjspcare-2012-000355journal_volume
5pub_type
杂志文章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: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:OBJECTIVES:The decision to refer a patient to palliative care is complex and often highly variable between medical specialists. In this paper, we examine medical specialists' motivations and triggers underpinning decision-making around referral to palliative care in order to facilitate improvements in referral practice...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000376
更新日期:2014-09-01 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::Medicine regards the prevention of death as an important priority. Yet patients may have a range of priorities of equal or greater importance. These other priorities are often not discussed or appreciated by treating doctors. OBJECTIVES:We sought to identify priorities of care for patients attending an advance care p...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2016-001177
更新日期:2019-09-01 00:00:00
abstract:BACKGROUND:Amyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon. OBJECTIVES:Our aim was to examine the scope of literat...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2020-002640
更新日期:2021-01-04 00:00:00
abstract::Effective communication is a prerequisite to the delivery of good palliative care. The increasing use of web-based technologies and social media challenges us to reassess traditional communication styles and to define appropriate applications of evolving technologies. The use of Skype, blogging and webcams by patients...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000210
更新日期:2012-06-01 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:OBJECTIVE:Evaluate the internal consistency and temporal stability of advance directives (ADs) generated by an interactive, online computer program. METHODS:33 participants completed the program at three visits, 2 weeks apart. Agreement rates were calculated for the General Wishes component of the AD. The test-retest ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2014-000814
更新日期:2017-03-01 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:BACKGROUND:Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services. AIM:...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002449
更新日期:2020-10-13 00:00:00
abstract:BACKGROUND:Resistance training (RT) is an effective way to increase muscle mass but little is known about its role to prevent sarcopenia in advanced cancer. Furthermore, the preferred setting for this training is not known. Considering home is frequently the place of care and death preferred by cancer patients, it is i...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002230
更新日期:2020-08-13 00:00:00
abstract:BACKGROUND:End-of-life care practices in long-term care facilities (LTCFs) are the focus of growing attention in Europe, due to rapidly increasing number of older persons living in LTCFs. The knowledge about end-of-life discussions or existence of written advance directives in the European LTCFs is scarce. This study's...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001743
更新日期:2019-05-21 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:OBJECTIVES:Venous thromboembolism (VTE) is common in advanced cancer. Guidelines suggest that indefinite anticoagulation be considered for patients with ongoing active cancer. There are no data on the management of cancer-associated thrombosis (CAT) at the end of life or when to stop anticoagulation as death approaches...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001804
更新日期:2019-06-25 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: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:BACKGROUND:Communication about the end of life is especially important in the family context, as patients and their families are considered as the care unit in palliative care. Open end-of-life communication can positively affect medical, psychological and relational outcomes during the dying process for patient and fa...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2020-002219
更新日期:2020-08-27 00:00:00
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:A diagnosis of cancer and anticipated death of a loved one has a significant impact on the whole family. Research has mainly focused on carers, with little emphasis on the wider, long-term implications. AIM:To explore the cancer beliefs of patients with advanced cancer and their relatives. The focus was on ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.74
更新日期:2015-04-01 00:00:00
abstract:OBJECTIVES:Education and training are seen as 'absolutely essential parts of providing palliative care'. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. METHODS:...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000233
更新日期:2013-06-01 00:00:00
abstract:OBJECTIVE:To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. METHODS:Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks w...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2017-001344
更新日期:2020-06-01 00:00:00
abstract:OBJECTIVES:The present study examined the impact of a patient-tailored complementary/integrative medicine (CIM) programme on sleep quality in patients undergoing chemotherapy for breast and gynaecological cancer. METHODS:Study participants received standard supportive care, with or without weekly CIM treatments. Distu...
journal_title:BMJ supportive & palliative care
pub_type: 临床试验,杂志文章
doi:10.1136/bmjspcare-2017-001351
更新日期:2020-09-01 00:00:00
abstract:BACKGROUND:In Switzerland, helping with assisted suicide under certain conditions is not prosecuted. With approximately 300 cases annually, this leaves behind a large group of bereaved people where its consequences are mostly unknown. The study aimed to explore family involvement in decision making prior to assisted su...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2013-000483
更新日期:2015-06-01 00:00:00
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 professio...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000407
更新日期:2015-09-01 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::The COVID-19 pandemic is expected to surpass the healthcare system's capacity to provide intensive care to all patients who deteriorate as a result of the disease. This poses a unique challenge to healthcare teams of rationing care during pandemic when resources are scarce. Healthcare providers will need to acquire ne...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2020-002364
更新日期:2020-06-11 00:00:00
abstract:OBJECTIVES:An increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input.3 The aim...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001672
更新日期:2020-09-01 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:OBJECTIVE:To examine the association of the use of hospice care on patient experience and outcomes of care. Promoting high-value, safe and effective care is an international healthcare imperative. However, the extent to which hospice care may improve the value of care is not well characterised. METHODS:A secondary ana...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001001
更新日期:2019-03-01 00:00:00