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1.
J Psychosoc Oncol ; 41(4): 434-456, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37155324

RESUMO

PROBLEM IDENTIFICATION: Proton Beam Therapy (PBT) is an advanced form of radiotherapy, yet little evidence exists on patient experience to inform decision making and improve future care. We thematically synthesized the qualitative evidence of patient and caregivers' perceptions and experiences of PBT. LITERATURE SEARCH: Five electronic databases were systematically searched, using Medical Subject Headings (MeSH) terms and keywords. Two reviewers independently screened search results for qualitative studies relating to patients' and caregivers' experiences of PBT. The search generated 4,020 records, of which nine were eligible. Study quality (assessed by CASP checklist) varied. DATA SYNTHESIS: Qualitative results were analyzed using thematic synthesis. Three main themes were generated: decision making and perceptions, living in the PBT "bubble," and coping with the cancer treatment journey. CONCLUSIONS: PBT is not yet widely accessible worldwide, which uniquely influences the patient experience. Our review uncovers areas PBT providers could target to improve patient-centered care; however, additional primary qualitative research is recommended.


Assuntos
Cuidadores , Terapia com Prótons , Humanos , Pesquisa Qualitativa , Adaptação Psicológica , Pacientes
2.
Frontline Gastroenterol ; 14(2): 144-148, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36818798

RESUMO

Objective: To describe and disseminate a package of support for parents who care for children with gastrostomies, consisting of a library of videos and resources to support families from referral for gastrostomy surgery, to long-term support at home. Methods: The resources were systematically developed and evaluated by parents, hospital and community-based nurses, paediatricians, a surgeon and researchers. Results: The videos empower families, reduce their anxiety and increase their confidence, providing support throughout the families' journey. Surveys and feedback from parents and clinicians show that the video library is seen as providing clear and comprehensive guidance and is suitable for integration into routine practice. To effectively disseminate these resources across a region, the videos need to be shared widely with relevant community and hospital-based teams, and shared through parent networks. The videos should be viewed as one part of a wider package of training and support, in combination with hands-on-practice and clinical support. Conclusions: The resources described have been developed with and for families. Critically the videos are founded in the lived-experience of families, as well as the expertise of clinicians from community and hospital services. Similar resources are needed to support families performing other types of specialist care. The resources are freely available to any parent or clinical team.

3.
Trials ; 23(1): 409, 2022 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-35578308

RESUMO

BACKGROUND: Phase 1 drug trials are popular treatment options for patients with advanced disease, despite the greater levels of uncertainty associated with them. However, their meaning and consequences for patient-participants remains under-explored. This review synthesises the qualitative evidence of patients' experiences of participating in phase 1 oncology trials, exploring their decisions to take part and the impacts of these trials on patient wellbeing. METHODS: A comprehensive literature search involving medical subject headings (MeSH) and keywords was undertaken in the following databases: MEDLINE, EMBASE, PsycINFO, Scopus, CINAHL, and Cochrane CENTRAL, with supplementary searches also conducted. Studies were independently screened for inclusion by two researchers. Included studies were critically appraised and data extracted using standardised forms. Qualitative results were analysed using thematic synthesis. RESULTS: Three main themes were identified across 13 studies: decision-making and joining the trial; experiences of taking part in the trial and hope and coping. Patients primarily joined trials hoping for therapeutic benefits, sentiments which prevailed and shaped their experiences across their trial journey. Rather than indicate therapeutic misconception based on poor understanding, patient perspectives more commonly pointed to differences between hope and expectation and cultural narratives of staying positive, trying everything and trusting in experts. CONCLUSIONS: These findings challenge information-based models of consent, favouring coping frameworks which account for the role of hope and meaning-making during serious illness. Personalised consideration of existential and quality-of-life matters before and during trials is recommended, including palliative and supportive care alternatives to active treatment. REVIEW REGISTRATION: The review was registered with PROSPERO international prospective register of systematic reviews (CRD 42020163250).


Assuntos
Neoplasias , Cuidados Paliativos , Ensaios Clínicos Fase I como Assunto , Humanos , Oncologia , Neoplasias/terapia , Pesquisa Qualitativa
4.
Palliat Med ; 36(1): 30-43, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34965753

RESUMO

BACKGROUND: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. AIM: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. DESIGN: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. DATA SOURCES: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. RESULTS: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. CONCLUSION: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups.


Assuntos
Dor , Cuidados Paliativos , Adolescente , Criança , Humanos , Lactente , Medição da Dor , Psicometria , Reprodutibilidade dos Testes
5.
BMJ Support Palliat Care ; 12(3): 305-315, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33262121

RESUMO

BACKGROUND: Paediatric palliative care makes frequent use of orodispersible and transmucosal drug delivery routes. The limited published experience of this practice suggests that it enables the delivery of needle-free symptom relief, with the potential to train family carers to administer anticipatory medications without reliance on trained health professionals. AIMS: To identify orodispersible and potential transmucosal alternatives that may be used in adults in the event of a patient having no oral or intravenous route and no access to subcutaneous injections. METHODS: The author panel identified medications through review of multiple drug formularies, review of the published evidence and their experience. Where possible, licensed alternatives were identified and any 'off label' or unlicensed medications clearly highlighted. RESULTS: A list of 27 medications is provided, which could be used either via the orodispersible or transmucosal alternative route for healthcare professionals delivering end of life care to consider when the licensed alternative routes are unavailable. All users of this guide are encouraged to use their professional judgement whenever selecting a medication for a patient, recognising that this review is neither a guideline nor a systematic review, and taking account of licensing considerations, adverse effects, potential unpredictability of time to effect and contraindications. CONCLUSION: Should it be necessary to use these orodispersible or transmucosal alternatives then any experience gained should be reported in the literature. Combined with further research, this experience offers the possibility of reducing injection frequency and inherent delays in medication administration, particularly in the community setting during the COVID-19 pandemic.


Assuntos
Tratamento Farmacológico da COVID-19 , Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Adulto , Criança , Humanos , Cuidados Paliativos , Pandemias
6.
J Pain Symptom Manage ; 62(5): 1041-1064, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-33933619

RESUMO

CONTEXT: Breakthrough pain (BTP) is common in cancer and other conditions yet there is a lack of validated BTP measurement tools. OBJECTIVES: We aimed to identify all tools assessing or characterising BTP in patients of any age with any condition, and to critically appraise their psychometric properties. METHODS: The Cochrane Library, PROSPERO, Embase, CINAHL, Medline, PsycINFO, Web of Science, Google Scholar, ProQuest, Evidence Search and OpenGrey were searched to identify all available tools used to assess BTP. A second search identified studies that had evaluated psychometric properties of tools identified in Search 1. Databases were searched from inception to November 2020. Studies were assessed using COSMIN criteria and GRADE guidelines. RESULTS: Search 1 found 51 tools used to assess BTP. Search 2 found six tools that had a development study and/or a study evaluating a tool psychometric property. No tool had more than one study evaluating psychometric properties so a meta-analysis could not be conducted. Studies were of inadequate to very good quality. Only the Breakthrough Pain Assessment Tool (BAT) had sufficient content validity and at least low-quality evidence for sufficient internal consistency. CONCLUSION: The BAT is recommended to characterise BTP in adults with cancer; its applicability to other conditions is unknown. The remaining tools need further evaluation. Only the Breakthrough Pain Questionnaire for Children was designed for children with cancer, but no psychometric properties were evaluated. There is a need for a tool to assess and characterise BTP in children with non-cancer diagnoses and those who cannot self-report.


Assuntos
Dor Irruptiva , Adulto , Criança , Bases de Dados Factuais , Humanos , Psicometria , Reprodutibilidade dos Testes , Autorrelato , Inquéritos e Questionários
7.
Palliat Med ; 35(6): 1118-1125, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33845654

RESUMO

BACKGROUND: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. AIM: To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial. DESIGN/ PARTICIPANTS: Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists (n = 28), caring for children with life-limiting illnesses receiving palliative care, participated. RESULTS: Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement. CONCLUSIONS: There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome.


Assuntos
Dor Irruptiva , Neoplasias , Analgésicos Opioides , Criança , Atenção à Saúde , Estudos de Viabilidade , Fentanila , Grupos Focais , Heroína , Humanos , Morfina
8.
Adv Drug Deliv Rev ; 160: 234-243, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33137363

RESUMO

The Coronavirus disease 2019 (COVID-19) pandemic has led to a surge in need for alternative routes of administration of drugs for end of life and palliative care, particularly in community settings. Transmucosal routes include intranasal, buccal, sublingual and rectal. They are non-invasive routes for systemic drug delivery with the possibility of self-administration, or administration by family caregivers. In addition, their ability to offer rapid onset of action with reduced first-pass metabolism make them suitable for use in palliative and end-of-life care to provide fast relief of symptoms. This is particularly important in COVID-19, as patients can deteriorate rapidly. Despite the advantages, these routes of administration face challenges including a relatively small surface area for effective drug absorption, small volume of fluid for drug dissolution and the presence of a mucus barrier, thereby limiting the number of drugs that are suitable to be delivered through the transmucosal route. In this review, the merits, challenges and limitations of each of these transmucosal routes are discussed. The goals are to provide insights into using transmucosal drug delivery to bring about the best possible symptom management for patients at the end of life, and to inspire scientists to develop new delivery systems to provide effective symptom management for this group of patients.


Assuntos
Tratamento Farmacológico da COVID-19 , COVID-19/epidemiologia , Sistemas de Liberação de Medicamentos/métodos , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Administração através da Mucosa , COVID-19/metabolismo , Humanos , Pandemias
10.
Health Expect ; 23(5): 1144-1154, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32542954

RESUMO

BACKGROUND: Increasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. METHODS: We conducted a thematic analysis of eleven in-depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. RESULTS: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life-threatening), co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. DISCUSSION: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health-care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.


Assuntos
Família , Pais , Cuidadores , Criança , Humanos , Assistência ao Paciente , Pesquisa Qualitativa
11.
Palliat Med ; 34(7): 871-888, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32419630

RESUMO

BACKGROUND: Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies. AIM: To review the quantitative and qualitative evidence on the effectiveness and impact of interventions and services providing support for adults bereaved through advanced illness. DESIGN: A mixed-methods systematic review was conducted, with narrative synthesis of quantitative results and thematic synthesis of qualitative results. The review protocol is published in PROSPERO ( www.crd.york.ac.uk/prospero , CRD42016043530). DATA SOURCES: The databases MEDLINE, Embase, PsycINFO, CINAHL and Social Policy and Practice were searched from 1990 to March 2019. Studies were included which reported evaluation results of bereavement interventions, following screening by two independent researchers. Study quality was assessed using GATE checklists. RESULTS: A total of 31 studies were included, reporting on bereavement support groups, psychological and counselling interventions and a mix of other forms of support. Improvements in study outcomes were commonly reported, but the quality of the quantitative evidence was generally poor or mixed. Three main impacts were identified in the qualitative evidence, which also varied in quality: 'loss and grief resolution', 'sense of mastery and moving ahead' and 'social support'. CONCLUSION: Conclusions on effectiveness are limited by small sample sizes and heterogeneity in study populations, models of care and outcomes. The qualitative evidence suggests several cross-cutting benefits and helps explain the impact mechanisms and contextual factors that are integral to the support.


Assuntos
Luto , Assistência Terminal , Adulto , Pesar , Humanos , Cuidados Paliativos , Apoio Social
12.
Palliat Med ; 34(6): 689-707, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32228216

RESUMO

BACKGROUND: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. AIM: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. DESIGN: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). DATA SOURCES: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. RESULTS: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views. CONCLUSION: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Administração dos Cuidados ao Paciente , Adolescente , Criança , Morte , Pessoal de Saúde/psicologia , Pessoal de Saúde/normas , Pessoal de Saúde/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Lactente , Cuidados Paliativos/normas , Cuidados Paliativos/estatística & dados numéricos , Administração dos Cuidados ao Paciente/estatística & dados numéricos , Pesquisa Qualitativa
13.
BMJ Open ; 10(3): e035541, 2020 03 29.
Artigo em Inglês | MEDLINE | ID: mdl-32229524

RESUMO

INTRODUCTION: Breakthrough pain is common in children and adults with cancer and other conditions, including those approaching end-of-life, although it is often poorly managed, possibly partly due to a lack of validated assessment tools. This review aims to (1) identify all available instruments measuring breakthrough pain in infants, children, adolescents or adults and (2) critically appraise, compare and summarise the quality of the psychometric properties of the identified instruments using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria. METHODS AND ANALYSIS: Two searches will be carried out between October 2019 and January 2020, one for each aim of the review. The Cochrane Library, International Prospective Register of Systematic Reviews, Embase, Cumulative Index of Nursing and Allied Health Literature, Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, Web of Science Core Collection, Google Scholar, the ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey databases will be searched from database inception until the date the search is conducted. Reference lists of eligible articles will be screened and authors in the field contacted. For search 1, articles will be screened by two reviewers by abstract, and full-text where necessary, to identify if a breakthrough pain assessment was used. Search 2 will then be conducted to identify studies evaluating measurement properties of these assessments. Two reviewers will screen articles from search 2 by title and abstract. All potentially relevant studies will be screened by full text by both reviewers. For search 2, data will be extracted in parallel with the quality assessment process, as recommended by COSMIN. Two reviewers will assess methodological quality using the COSMIN Risk of Bias checklist and the COSMIN updated criteria for good measurement properties. Findings will be summarised and, if possible, data will be pooled using meta-analysis. The quality of the evidence will be graded and summarised using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) guidelines. ETHICS AND DISSEMINATION: Results of this review will be submitted for publication in a peer review journal and presented at conferences. PROSPERO REGISTRATION NUMBER: CRD42019155583.


Assuntos
Dor Irruptiva , Psicometria , Dor Irruptiva/diagnóstico , Dor Irruptiva/psicologia , Dor Irruptiva/terapia , Humanos , Metanálise como Assunto , Manejo da Dor , Revisões Sistemáticas como Assunto
14.
BMC Palliat Care ; 19(1): 29, 2020 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-32164642

RESUMO

BACKGROUND: Bereavement support is a core part of palliative care. However, the evidence base is limited by a lack of consistency in the outcomes used to evaluate services and models of support, which makes it difficult to compare approaches. Core Outcome Sets (COS) represent the minimum that should be measured in research into specific conditions or services. The aim of this study was to use a stakeholders' perspective to develop a COS for evaluating bereavement support for adults in adult palliative care settings. METHODS: A list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey (n = 240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items (n = 23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions. RESULTS: 'Ability to cope with grief' and 'Quality of life and mental wellbeing' were selected as two core outcomes. Twenty-one different dimensions to explore when assessing these outcomes were also identified. The coping related dimensions have been categorised as: Negative and overwhelming grief; Communication and connectedness; Understanding, accepting and finding meaning in grief; Finding balance between grief and life going forwards; Accessing appropriate support. Those relating to quality of life and wellbeing have been categorised as; Participation in work and/or regular activities; Relationships and social functioning; Positive mental wellbeing and Negative mental and emotional state. CONCLUSION: This COS outlines a more consistent way forward for bereavement researchers and practitioners, whilst also orientating towards public health and resilience-based approaches to bereavement care. Further work is planned to identify and develop measures which are specific to this core outcome set, and which will facilitate the future comparability of bereavement services and interventions.


Assuntos
Adaptação Psicológica , Cuidados Paliativos na Terminalidade da Vida/normas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Luto , Técnica Delphi , Feminino , Cuidados Paliativos na Terminalidade da Vida/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Qualidade de Vida/psicologia , Inquéritos e Questionários
15.
BMJ Open ; 9(7): e030566, 2019 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-31352426

RESUMO

INTRODUCTION: This protocol describes the objective and methods of a systematic review of barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people (ICYP) at end-of-life. METHODS AND ANALYSIS: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey will be electronically searched. Reference screening of relevant articles and inquiries to researchers in the field will be undertaken. Studies will be selected if they apply qualitative, quantitative or mixed-methods designs to explore barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in ICYP at end-of-life.Articles will be screened by title and abstract by one reviewer with a second reviewer assessing 10% of the articles. Both reviewers will read and screen all remaining potentially relevant articles. For included articles, one reviewer will extract study characteristics and one will check this.Both reviewers will undertake independent quality assessments of included studies using established and appropriate checklists including The Critical Appraisal Skills Programme Qualitative Checklist; The evaluative criteria of credibility, transferability, dependability and confirmability; The Quality Assessment Tool for Quantitative Studies, and The Mixed Methods Appraisal Tool. Data synthesis methods will be decided after data extraction and assessment. ETHICS AND DISSEMINATION: This review will inform our understanding of symptom management in ICYP at end-of-life. The findings will be reported in a peer-reviewed journal and presented at conferences. The study raises no ethical issues. PROSPERO REGISTRATION NUMBER: CRD42019124797.


Assuntos
Cuidados Paliativos/métodos , Pediatria/métodos , Assistência Terminal/métodos , Atitude do Pessoal de Saúde , Competência Clínica , Humanos , Satisfação do Paciente , Pesquisa Qualitativa , Revisões Sistemáticas como Assunto
16.
BMJ Support Palliat Care ; 9(1): e14, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26647042

RESUMO

OBJECTIVES: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care. METHODS: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment. RESULTS: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life. CONCLUSIONS: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.


Assuntos
Pesquisa Biomédica/normas , Cuidados Paliativos na Terminalidade da Vida/psicologia , Entrevistas como Assunto/normas , Cuidados Paliativos/psicologia , Pesquisadores/psicologia , Assistência Terminal/psicologia , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Consenso , Feminino , Guias como Assunto , Serviços de Assistência Domiciliar/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Pesquisa Qualitativa , Assistência Terminal/estatística & dados numéricos
17.
BMJ Support Palliat Care ; 9(2): 219-224, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26823291

RESUMO

BACKGROUND: Social media (SM) have altered the way we live and, for many, the way we die. The information available on even the rarest conditions is vast. Free from restrictions of mobility, time and distance, SM provides a space for people to share experiences of illness, death and dying, and potentially benefit from the emotional and practical support of others n similar positions. The communications that take place in these spaces also create large amounts of 'data' which, for any research centre, cannot be ignored. However, for a palliative care research centre the use of this 'data' comes with specific ethical dilemmas. METHODS: This paper details the process that we, as a research, went through in constructing a set of ethical guidelines by which to work. This involved conducting two consensus days; one with researchers from within the centre, and one with the inclusion of external researchers with a specific interest in SM. RESULTS: The primary themes that emerged from the consensus meetings includes; SM as a public or private space; the status of open and closed groups; the use of historical data; recruiting participants and obtaining informed consent and problems of anonymity associated with dissemination. CONCLUSIONS: These are the themes that this paper will focus on prior to setting out the guidelines that we subsequently constructed.


Assuntos
Pesquisa Biomédica/ética , Pesquisa Biomédica/normas , Cuidados Paliativos/ética , Cuidados Paliativos/normas , Projetos de Pesquisa , Mídias Sociais/ética , Mídias Sociais/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Guias como Assunto , Humanos , Masculino , Pessoa de Meia-Idade
18.
Trials ; 19(1): 419, 2018 Aug 04.
Artigo em Inglês | MEDLINE | ID: mdl-30075741

RESUMO

BACKGROUND: The ELCID (Early Lung Cancer Investigation and Diagnosis) trial was a feasibility randomised controlled trial examining the effect on lung cancer diagnosis of lowering the threshold for referral for urgent chest x-ray for smokers and recent ex-smokers, aged over 60 years with new chest symptoms. The qualitative component aimed to explore the feasibility of individually randomising patients to an urgent chest x-ray or not and to investigate any barriers to patient recruitment and participation. We integrated this within the feasibility trial to inform the design of any future definitive trial, particularly in view of the lack of research exploring symptomatic patients' experiences of participating in diagnostic trials for possible/suspected lung cancer. Although previous studies contributed valuable information concerning screening for lung cancer and patient participation in trials, this paper is the first to explore issues relating to this specific patient group. METHODS: Qualitative interviews were conducted with 21 patients, comprising 9 who had been randomised to receive an immediate chest x-ray, 10 who were randomised to receive the standard treatment according to the National Institute for Health and Care Excellence guidelines, and 2 who chose not to participate in the trial. Interviews were analysed using a framework approach. RESULTS: The findings of this analysis showed that altruism, personal benefit and the reassurance of not having lung cancer were important factors in patient participation. However, patients largely believed that being in the intervention arm was more beneficial, highlighting a lack of understanding of clinical equipoise. Disincentives to participation in the trial included the stigmatisation of patients who smoked (given the inclusion criteria). Although the majority of patients reported that they were happy with the trial design, there was evidence of poor understanding. Last, for several patients, placing trust in health professionals was preferred to understanding the trial processes. CONCLUSIONS: The integration of a qualitative study focusing on participant experience as a secondary outcome of a feasibility trial enabled exploration of patient response to participation and recruitment. The study demonstrated that although it is feasible to recruit patients to the ELCID trial, more work needs to be done to ensure an understanding of study principles and also of smoking stigmatisation. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01344005 . Registered on 27 April 2011.


Assuntos
Compreensão , Detecção Precoce de Câncer/métodos , Neoplasias Pulmonares/diagnóstico por imagem , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Radiografia Torácica , Sujeitos da Pesquisa/psicologia , Altruísmo , Estudos de Viabilidade , Feminino , Humanos , Entrevistas como Assunto , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/psicologia , Masculino , Pessoa de Meia-Idade , Motivação , Valor Preditivo dos Testes , Pesquisa Qualitativa , Fatores de Risco , Fumantes/psicologia , Fumar/efeitos adversos , Fumar/epidemiologia , Fumar/psicologia , Estereotipagem , País de Gales/epidemiologia
20.
Sociol Health Illn ; 39(8): 1448-1464, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-29044627

RESUMO

Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky's Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one's illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This article considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services.


Assuntos
Adaptação Psicológica , Ensaios Clínicos como Assunto , Estado Terminal/psicologia , Neoplasias Pulmonares/psicologia , Qualidade de Vida , Adulto , Idoso , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Teoria Psicológica , Pesquisa Qualitativa
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