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 caregivers. AIM:To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. METHOD:A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. RESULTS:Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). CONCLUSION:Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Cohen SR,Keats S,Cherba M,Allen D,MacKinnon CJ,Bitzas V,Kogan N,Penner JL,Calislar MP,Feindel A,Lapointe B,Baxter S,O'Brien S,Stajduhar Kdoi
10.1136/bmjspcare-2015-000906.8subject
Has Abstractpub_date
2015-04-01 00:00:00pages
A3eissn
2045-435Xissn
2045-4368pii
bmjspcare-2015-000906.8journal_volume
5 Suppl 1pub_type
杂志文章abstract:OBJECTIVES:Clinicians report that withdrawal of mechanical ventilation in motor neuron disease is challenging. We report on the evaluation of the process and outcomes called for by the Association for Palliative Medicine of Great Britain and Ireland (APM) guidance. METHODS:Excel analysis of a core data set, defined in...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002170
更新日期:2020-05-21 00:00:00
abstract:BACKGROUND:In October 2014 a detailed mapping study of volunteers in palliative care services in NSW was undertaken for the first time. This presentation will provide a thematic analysis of the initial findings. AIMS:The aim of this study was to provide a thematic analysis of the occupational terrain of palliative car...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.28
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:BACKGROUND:Patient held records need to be evaluated in palliative care settings. OBJECTIVES:To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers. METHODS:A mixed methods prospective longitudinal c...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001589
更新日期:2018-08-18 00:00:00
abstract:OBJECTIVES:Dyspnoea in patients with chronic obstructive pulmonary disease (COPD) is frequent and often persists despite conventional treatment. This study aimed to evaluate the efficacy and safety of oral morphine for dyspnoea in Japanese COPD patients. METHODS:We conducted a multi-institutional, prospective, before-...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001929
更新日期:2019-11-15 00:00:00
abstract::Purple urine bag syndrome (PUBS) is a rare condition characterised by urine discolouration. The management of PUBS remains controversial. Four females (mean age 84.5±9.7 years) with palliative conditions (two cancer and two non-cancer cases) presenting PUBS were identified. Urine bags were changed in all cases. Urinar...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001601
更新日期:2019-06-01 00:00:00
abstract::This case report discusses the problems encountered with dystonia in a teenage boy with end-stage calcifying leucodystrophy. It records the successful use of prolonged continuous subcutaneous clonidine and the change to thrice weekly transdermal clonidine. ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001010
更新日期:2018-12-01 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: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:CONTEXT:Patients living with cystic fibrosis (CF) report impaired quality of life. Little is known about unmet supportive care needs among adults living with CF and how they are associated with demographic characteristics. OBJECTIVES:The primary objective of this study was to identify associations between demographic ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001819
更新日期:2019-08-31 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
abstract:OBJECTIVE:To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. DESIGN:Systematic review. SETTING:Child and adult services and interface between healthcare providers. PATIENTS:Young people aged 13-24 years with palliative care conditions in the p...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare.2009.163931rep
更新日期:2011-09-01 00:00:00
abstract:AIM:Junior doctors are frequently required to discuss resuscitation status with patients. They generally lack experience, confidence and skill in having these conversations. However, there is currently no formal postgraduate education requirement to improve or develop in this area. The aim of this educational intervent...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002479
更新日期:2020-08-21 00:00:00
abstract::Palliative sedation is the intentional use of sedatives to manage refractory symptom(s), such as pain and/or terminal restlessness. This case report describes the successful use of propofol, an ultra-fast-acting anaesthetic agent commonly used for anaesthesia induction and maintenance to manage refractory agitated del...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001899
更新日期:2020-03-01 00:00:00
abstract:OBJECTIVE:Caregivers to patients with primary malignant brain tumours neglect their own physical and emotional needs during the disease trajectory. The aim of the systematic review was to explore how informal caregivers of patients with primary malignant brain tumour (high-grade glioma (HGG)) experience and manage thei...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2017-001386
更新日期:2019-03-01 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: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: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:OBJECTIVES:MicroRNAs (miRNAs) have recently been reported as useful diagnostic markers in cancer; however, relationships of miRNAs with adverse events during chemotherapy have yet to be fully described. In this study, we examined the relationship between serum miRNA and the risk of peripheral neuropathy (PN), a common ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001900
更新日期:2020-01-14 00:00:00
abstract::The aim of this article is to use data from Belgium to analyse distinctions between palliative sedation and euthanasia. There is a need to reduce confusion and improve communication related to patient management at the end of life specifically regarding the rapidly expanding area of patient care that incorporates a sp...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2017-001398
更新日期:2018-09-01 00:00:00
abstract:BACKGROUND:The legalisation of medical assistance in dying in numerous countries over the last 20 years represents a significant shift in practice and scope for many clinicians who have had little-to-no training to prepare them to sensitively respond to patient requests for hastened death. AIMS:Our objective was to re...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2019-002018
更新日期:2020-06-29 00:00:00
abstract:OBJECTIVES:Mechanical ventilation (MV) has been shown to improve survival and quality of life in motor neuron disease (MND). However, during the progression of MND, there may come a point when MV is no longer felt appropriate. Association of Palliative Medicine Guidelines have been recently published to help clinicians...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2017-001464
更新日期:2020-03-01 00:00:00
abstract:OBJECTIVES:To investigate the body composition and dietary intake in the patients with head and neck cancer (HNC) during radiotherapy (RT), and explore the relationship between them. METHODS:This was a prospective, longitudinal observational study. Adult patients with HNC undergoing RT between March 2017 and August 20...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002359
更新日期:2020-09-11 00:00:00
abstract:BACKGROUND:Cancer-related pain is a significant and debilitating problem. Non-pharmacological treatments such as acupuncture may have an adjunctive role in controlling pain without the undesirable side effects of drug regimens and yet the evidence base remains limited. OBJECTIVES:The main objective of this systematic ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2011-000022
更新日期:2011-06-01 00:00:00
abstract:OBJECTIVE:In Singapore, more elderly are living in nursing homes (NHs), with a resultant increase in deaths occurring in NHs. However, palliative care training is limited in Singapore's core nursing curriculum, and many NHs rely on foreign-trained staff who may not have previous palliative care training. Our study aime...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002690
更新日期:2020-11-09 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: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: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: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:OBJECTIVES:As a rose geranium in sesame oil spray product has been anecdotally noted to improve nasal vestibulitis symptoms, this study was designed to assess whether patients with nasal vestibulitis associated with cancer-directed therapy experienced symptomatic improvements from it. METHODS:Patients with breast canc...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001569
更新日期:2020-12-01 00:00:00