Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study.

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.

authors

Bowyer AV,Finlay I,Baillie J,Byrne A,McCarthy J,Sampson C,Snow V,Nelson A

doi

10.1136/bmjspcare-2015-000920

subject

Has Abstract

pub_date

2019-03-01 00:00:00

pages

e17

issue

1

eissn

2045-435X

issn

2045-4368

pii

bmjspcare-2015-000920

journal_volume

9

pub_type

杂志文章
  • Advance directives in European long-term care facilities: a cross-sectional survey.

    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

    authors: Andreasen P,Finne-Soveri UH,Deliens L,Van den Block L,Payne S,Gambassi G,Onwuteaka-Philipsen BD,Smets T,Lilja E,Kijowska V,Szczerbińska K,PACE consortium.

    更新日期:2019-05-21 00:00:00

  • OA28 At the clinical shores - palliative care volunteers and population health in new south wales (NSW).

    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

    authors: Hansen L,Huntir A

    更新日期:2015-04-01 00:00:00

  • Information transfer to out-of-hours co-operatives: a survey of general practitioners' views in relation to palliative patients.

    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

    authors: Kiely F,Murphy M,O'Brien T

    更新日期:2013-12-01 00:00:00

  • PA14 The legacy of cancer: why a health promoting approach is so important in palliative care.

    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

    authors: Baker N,Armour K,Meystre C,Redwood S,Dawson A

    更新日期:2015-04-01 00:00:00

  • Volunteer activity in specialist paediatric palliative care: a national survey.

    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

    authors: Burbeck R,Low J,Sampson EL,Scott R,Bravery R,Candy B

    更新日期:2015-09-01 00:00:00

  • OA48 Engaging communities: the impact of a decade of health promoting palliative care policy in victoria.

    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

    authors: Rumbold B,Grindrod A

    更新日期:2015-04-01 00:00:00

  • Improving specialist palliative care in residential care for older people: a checklist to guide practice.

    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

    authors: Forbat L,Chapman M,Lovell C,Liu WM,Johnston N

    更新日期:2018-09-01 00:00:00

  • Adult palliative care 2004-2030 population study: estimates and projections in Malaysia.

    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

    authors: Yang SL,Woon YL,Teoh CCO,Leong CT,Lim RBL

    更新日期:2020-08-21 00:00:00

  • Enzyme replacement in advanced pancreatic cancer: patient perceptions.

    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

    authors: Landers A,McKenzie C,Pitama SG,Brown H

    更新日期:2020-03-22 00:00:00

  • "A monster that lives in our lives": experiences of caregivers of people with motor neuron disease and identifying avenues for support.

    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

    authors: Anderson NH,Gluyas C,Mathers S,Hudson P,Ugalde A

    更新日期:2019-12-01 00:00:00

  • Management of venous thromboembolism in far-advanced cancer: current practice.

    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

    authors: Noble S,Banerjee S,Pease NJ

    更新日期:2019-06-25 00:00:00

  • Effect of creative writing on mood in patients with cancer.

    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

    authors: Zhu J,Hussain M,Joshi A,Truica CI,Nesterova D,Collins J,Saunders EFH,Hayes M,Drabick JJ,Joshi M

    更新日期:2020-03-01 00:00:00

  • Assisted ventilation in motor neurone disease during inpatient palliative care: barriers and utilisation.

    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

    authors: Gleeson A,Johnson F

    更新日期:2020-09-01 00:00:00

  • Preference for a single or shared room in a UK inpatient hospice: patient, family and staff perspectives.

    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

    authors: Williams C,Gardiner C

    更新日期:2015-06-01 00:00:00

  • Does place of death vary by deprivation for patients known to specialist palliative care services?

    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

    authors: Macfarlane M,Carduff E

    更新日期:2018-12-01 00:00:00

  • Simulation to improve medical student confidence and preparedness to care for the dying: a feasibility study.

    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

    authors: Wells G,Montgomery J,Hiersche A

    更新日期:2019-08-28 00:00:00

  • Rose geranium in sesame oil nasal spray: a treatment for nasal vestibulitis?

    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

    authors: Cathcart-Rake EJ,Smith D,Zahrieh D,Loprinzi CL

    更新日期:2020-12-01 00:00:00

  • Purple urine bag syndrome in palliative care.

    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

    authors: Wattanapisit S,Wattanapisit A,Meepuakmak A,Rakkapan P

    更新日期:2019-06-01 00:00:00

  • Mechanical ventilation withdrawal in motor neuron disease: an evaluation of practice.

    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

    authors: Faull C,Wenzel D

    更新日期:2020-05-21 00:00:00

  • OA2 Chinese migrant peasant workers and the contradictory demands of filial piety in neo-liberal chinese society: a case study of filial end-of-life care in langzhong city.

    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

    authors: He L

    更新日期:2015-04-01 00:00:00

  • Bereaved caregivers of patients with high-grade glioma: a systematic review.

    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

    authors: Piil K,Nordentoft S,Larsen A,Jarden M

    更新日期:2019-03-01 00:00:00

  • Clinician responses to legal requests for hastened death: a systematic review and meta-synthesis of qualitative research.

    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

    authors: Patel T,Christy K,Grierson L,Shadd J,Farag A,O'Toole D,Lawson J,Vanstone M

    更新日期:2020-06-29 00:00:00

  • Provision of palliative care in National Cancer Grid treatment centres in India: a cross-sectional gap analysis survey.

    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

    authors: Damani A,Salins N,Ghoshal A,Chowdhury J,Muckaden MA,Deodhar J,Pramesh CS

    更新日期:2020-06-09 00:00:00

  • Methodological considerations for researching the financial costs of family caregiving within a palliative care context.

    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

    authors: Gardiner C,Allen R,Moeke-Maxwell T,Robinson J,Gott M

    更新日期:2016-12-01 00:00:00

  • Subcutaneous levetiracetam for the management of seizures at the end of life.

    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

    authors: Sutherland AE,Curtin J,Bradley V,Bush O,Presswood M,Hedges V,Naessens K

    更新日期:2018-06-01 00:00:00

  • Peripheral neuropathy from paclitaxel: risk prediction by serum microRNAs.

    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

    authors: Noda-Narita S,Shimomura A,Tanabe Y,Kawauchi J,Matsuzaki J,Takizawa S,Aoki Y,Shimizu C,Tamura K,Ochiya T

    更新日期:2020-01-14 00:00:00

  • Current collaboration between palliative care and neurology: a survey of clinicians in Europe.

    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

    authors: Oliver D,Borasio GD,Veronese S,Voltz R,Lorenzl S,Hepgul N

    更新日期:2020-07-10 00:00:00

  • Collaborative palliative care for advanced heart failure: outcomes and costs from the 'Better Together' pilot study.

    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

    authors: Pattenden JF,Mason AR,Lewin RJ

    更新日期:2013-03-01 00:00:00

  • Propofol for palliative sedation.

    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

    authors: Sulistio M,Wojnar R,Michael NG

    更新日期:2020-03-01 00:00:00

  • Analysis of health administration data to inform health service planning for paediatric palliative care.

    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

    authors: Bowers AP,Bradford N,Chan RJ,Herbert A,Yates P

    更新日期:2020-10-13 00:00:00