Abstract:
BACKGROUND:A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. AIM:This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions. DESIGN:A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken. SETTING/PARTICIPANTS:Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia. RESULTS:15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining. CONCLUSIONS:Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation. TRIAL REGISTRATION NUMBER:ACTRN12615000120572, pre-results.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Anderson NH,Gluyas C,Mathers S,Hudson P,Ugalde Adoi
10.1136/bmjspcare-2015-001057subject
Has Abstractpub_date
2019-12-01 00:00:00pages
e27issue
4eissn
2045-435Xissn
2045-4368pii
bmjspcare-2015-001057journal_volume
9pub_type
杂志文章abstract:OBJECTIVES:Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation aga...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2016-001159
更新日期:2017-09-01 00:00:00
abstract::Fentanyl has a low molecular weight and is lipophilic making it suitable for transdermal administration. However, multiple factors appear to lead to interindividual variation in absorption via this route. Here we describe an unusual case where a patient was found to have twelve 100 μg/hour fentanyl patches in situ whi...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001652
更新日期:2019-12-01 00:00:00
abstract::There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2011-000057
更新日期:2011-09-01 00:00:00
abstract:BACKGROUND:Pain control is an essential component of high-quality palliative care. Unfortunately, many low-income and middle-income countries lack an appropriate infrastructure to provide palliative care and suffer from a severe lack of access to opioid analgesics to alleviate pain from various conditions such as cance...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001871
更新日期:2019-10-30 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: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: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:According to a small pilot study on palliative cancer patients at our ward, vitamin D supplementation had beneficial effects on pain (measured as opioid consumption), infections and quality of life (QoL) without having any significant side effects. OBJECTIVE:The primary objective of the 'Palliative-D' study...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.1136/bmjspcare-2017-001429
更新日期:2017-12-01 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:OBJECTIVES:Evidence-based communication skills training for health and social care professionals is essential to improve the care of seriously ill patients and their families. We aimed to evaluate the self-reported impact of 'Difficult Conversations', a multidisciplinary half-day interactive workshop, and gain feedback...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2017-001447
更新日期:2018-03-01 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::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: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::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: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: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:INTRODUCTION:The incidence of some fatal diseases, including HIV/AIDS, accompanied by depression has become a significant concern in developed, developing and underdeveloped countries. A great deal of time and money are spent on controlling and reducing the complications of this infection across the world. Accordingly,...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,meta分析
doi:10.1136/bmjspcare-2019-001952
更新日期:2019-12-01 00:00:00
abstract::Malignant spinal cord compression (MSCC) in patients with short life expectancy is most frequently treated with radiotherapy and/or corticosteroids. Hypofractionation has been proven to be efficient in metastatic bone pain, but the level of evidence for hypofractionation in MSCC is limited. Searches were performed in ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2011-000154
更新日期:2012-03-01 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: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:OBJECTIVE:To determine the feasibility of conducting creative writing workshops (CWW) for patients with cancer to promote improvement in mood. METHOD:We piloted a prospective study to determine the feasibility of conducting CWW over a 4-week period. Patients were randomised 2:1 to either an intervention arm (IA) or to...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,随机对照试验
doi:10.1136/bmjspcare-2018-001710
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: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: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: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:This study aimed to identify gaps in palliative care (PC) provision across the National Cancer Grid (NCG) centres in India. METHODS:We performed a cross-sectional validated web-based survey on 102 NCG cancer centres (Nov '17 to April '18). The survey questionnaire had seven sections collecting data relating...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002152
更新日期:2020-06-09 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: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:BACKGROUND:Values used in economic evaluation are typically obtained from the general public, which is problematic when measures are to be used with people experiencing a life-course stage such as the end of life. OBJECTIVE:To assess the feasibility of obtaining values for the ICECAP-Supportive Care Measure (SCM) from...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001582
更新日期:2019-12-01 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