Abstract:
BACKGROUND:In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design. METHODS:Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically. RESULTS:Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions. CONCLUSIONS:Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Bowyer AV,Finlay I,Baillie J,Byrne A,McCarthy J,Sampson C,Snow V,Nelson Adoi
10.1136/bmjspcare-2015-000920subject
Has Abstractpub_date
2019-03-01 00:00:00pages
e17issue
1eissn
2045-435Xissn
2045-4368pii
bmjspcare-2015-000920journal_volume
9pub_type
杂志文章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: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:In Ireland, weekend and night medical cover for community based patients is largely provided by general practice co-operatives. Doctors working in this service do not have direct access to patients' medical records which challenges continuity of care. OBJECTIVES:This study investigates the opinion of genera...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000281
更新日期:2013-12-01 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: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: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:OBJECTIVES:Palliative care needs rounds are triage meetings that have been introduced in residential care for older adults to help identify and prioritise care for people most at risk for unplanned dying with inadequately controlled symptoms. This study sought to generate an evidence-based checklist in order to support...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2017-001332
更新日期:2018-09-01 00:00:00
abstract:OBJECTIVES:To estimate past trends and future projection of adult palliative care needs in Malaysia. METHODS:This is a population-based secondary data analysis using the national mortality registry from 2004 to 2014. Past trend estimation was conducted using Murtagh's minimum and maximum methods and Gómez-Batiste's me...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002283
更新日期:2020-08-21 00:00:00
abstract:PURPOSE:Advanced pancreatic cancer has a universally poor survival rate. Patients frequently develop malabsorption that requires pancreatic enzyme replacement therapy (PERT). This study explores the experience of patient engagement with PERT and how the medication is taken and tolerated. METHODS:Participants with adva...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002153
更新日期:2020-03-22 00:00:00
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 ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001057
更新日期:2019-12-01 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: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: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: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: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: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
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: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: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: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: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:The financial impact of family caregiving in a palliative care context has been identified as an issue which requires further research. However, little is known about how research should be conducted in this area. OBJECTIVE:The aim of this study was to explore the opinions of family caregivers in New Zealan...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001046
更新日期:2016-12-01 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: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:INTRODUCTION:The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe. METHODS:This online survey aimed to look at collaboration across Europe, using the links of the European Association for P...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002322
更新日期:2020-07-10 00:00:00
abstract:BACKGROUND:Patients with heart failure often receive little supportive or palliative care. 'Better Together' was a 2-year pilot study of a palliative care service for patients with advanced congestive heart failure (CHF). OBJECTIVE:To determine if the intervention made it more likely that patients would be cared for a...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000251
更新日期:2013-03-01 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: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