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BACKGROUND: Effective stakeholder engagement in health research is increasingly being recognised and promoted as an important pathway to closing the gap between knowledge production and its use in health systems. However, little is known about its process and impacts, particularly in low-and middle-income countries. This opinion piece draws on the stakeholder engagement experiences from a global health research programme on Chronic Obstructive Pulmonary Disease (COPD) led by clinician researchers in Brazil, China, Georgia and North Macedonia, and presents the process, outcomes and lessons learned. MAIN BODY: Each country team was supported with an overarching engagement protocol and mentored to develop a tailored plan. Patient involvement in research was previously limited in all countries, requiring intensive efforts through personal communication, meetings, advisory groups and social media. Accredited training programmes were effective incentives for participation from healthcare providers; and aligning research findings with competing policy priorities enabled interest and dialogue with decision-makers. The COVID-19 pandemic severely limited possibilities for planned engagement, although remote methods were used where possible. Planned and persistent engagement contributed to shared knowledge and commitment to change, including raised patient and public awareness about COPD, improved skills and practice of healthcare providers, increased interest and support from clinical leaders, and dialogue for integrating COPD services into national policy and practice. CONCLUSION: Stakeholder engagement enabled relevant local actors to produce and utilise knowledge for small wins such as improving day-to-day practice and for long-term goals of equitable access to COPD care. For it to be successful and sustained, stakeholder engagement needs to be valued and integrated throughout the research and knowledge generation process, complete with dedicated resources, contextualised and flexible planning, and commitment.
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Países em Desenvolvimento , Pandemias , Humanos , Brasil , República da Macedônia do Norte , República da GeórgiaRESUMO
BACKGROUND: Empathy is widely recognised as an important element of medical practice contributing to patient outcomes and satisfaction. It is also an important element of collaborative work in a healthcare team. However, there is evidence to suggest that empathy towards patients declines over time, particularly in surgical specialities. There is little qualitative research on this decline in surgical trainees, particularly in the UK. Therefore, the aim of this study was to explore how trainee surgeons experience empathy over the course of their career, both towards patients and colleagues and how they perceive it in others. METHODS: 10 semi-structured interviews were carried out with surgical trainees of different grades and specialties in January and February 2022. Framework analysis was used to interpret the data. RESULTS: Participants experienced an evolution in empathy over their career as their personal and professional experience was added to. They drew a distinction between desensitisation and actual decline in empathy and identified more with experiencing the former in their careers. Participants also felt interprofessional relationships require empathy, and this could be improved upon. Finally, they highlighted specific impacts of the COVID-19 pandemic upon their training, including reduced theatre time. CONCLUSIONS: Participants felt training could be improved in regard to accessing training opportunities and relationships with colleagues, although many felt empathy between colleagues is better than it has been in the past. This project highlighted areas for future research, such as with surgeons in later stages of their careers, or mixed-methods projects.
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Empatia , Cirurgiões , Humanos , Pandemias , Pesquisa Qualitativa , Reino UnidoRESUMO
This initial article delves into the methodology, methods and theories, while the subsequent article will centre on the discoveries, discussion and conclusion. The study aimed to address the research question: how do men perceive their engagement in the self-management of non-cancer-related lymphoedema? An interpretivist qualitative methodology was employed, utilising an online survey based on the validated lymphoedema quality of life tool (LYMQoL). The data underwent inductive narrative inquiry. The study incorporated theories such as hegemonic masculinity and the health, illness, men and masculinities (HIMM) framework. The findings will be detailed in the second article in this series. This article has delineated the objective, methodologyand methods, employing a qualitative interpretivist approach through narrative inquiry. The study incorporated masculinity theories, including hegemonic masculinity and HIMM. The second article will present the findings and their significance within the broader literature.
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Masculinidade , Qualidade de Vida , Masculino , Humanos , Reino Unido , Pesquisa QualitativaRESUMO
INTRODUCTION: In 2019, smoking prevalence in North Macedonia was one of the world's highest at around 46% in adults. However, access to smoking cessation treatment is limited and no co-ordinated smoking cessation programmes are provided in primary care. METHODS: We conducted a three parallel-armed randomised controlled trial (n = 1368) to investigate effectiveness and cost-effectiveness of lung age (LA) or exhaled carbon monoxide (CO) feedback combined with very brief advice (VBA) to prompt smoking cessation compared with VBA alone, delivered by GPs in primary care in North Macedonia. All participants who decided to attempt to quit smoking were advised about accessing smoking cessation medications and were also offered behavioural support as part of the "ACT" component of VBA. Participants were aged ≥ 35 years, smoked ≥ 10 cigarettes per day, were recruited from 31 GP practices regardless of motivation to quit and were randomised (1:1:1) using a sequence generated before the start of recruitment. The primary outcome was biochemically validated 7-day point prevalence abstinence at 4 weeks (wks). Participants and GPs were not blinded to allocation after randomisation, however outcome assessors were blind to treatment allocation. RESULTS: There was no evidence of a difference in biochemically confirmed quitting between intervention and control at 4wks (VBA + LA RR 0.90 (97.5%CI: 0.35, 2.27); VBA + CO RR 1.04 (97.5%CI: 0.44, 2.44)), however the absolute number of quitters was small (VBA + LA 1.6%, VBA + CO 1.8%, VBA 1.8%). A similar lack of effect was observed at 12 and 26wks, apart from in the VBA + LA arm where the point estimate was significant but the confidence intervals were very wide. In both treatment arms, a larger proportion reported a reduction in cigarettes smoked per day at 4wks (VBA + LA 1.30 (1.10, 1.54); VBA + CO 1.23 (1.03, 1.49)) compared with VBA. The point estimates indicated a similar direction of effect at 12wks and 26wks, but differences were not statistically significant. Quantitative process measures indicated high fidelity to the intervention delivery protocols, but low uptake of behavioural and pharmacological support. VBA was the dominant intervention in the health economic analyses. CONCLUSION: Overall, there was no evidence that adding LA or CO to VBA increased quit rates. However, a small effect cannot be ruled out as the proportion quitting was low and therefore estimates were imprecise. There was some evidence that participants in the intervention arms were more likely to reduce the amount smoked, at least in the short term. More research is needed to find effective ways to support quitting in settings like North Macedonia where a strong smoking culture persists. TRIAL REGISTRATION: The trial was registered at http://www.isrctn.com (ISRCTN54228638) on the 07/09/2018.
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Abandono do Hábito de Fumar , Adulto , Humanos , Abandono do Hábito de Fumar/métodos , Intervenção em Crise , Retroalimentação , República da Macedônia do Norte/epidemiologia , Fumar/epidemiologia , Fumar/terapia , NicotianaRESUMO
DrugBank (www.drugbank.ca) is a web-enabled database containing comprehensive molecular information about drugs, their mechanisms, their interactions and their targets. First described in 2006, DrugBank has continued to evolve over the past 12 years in response to marked improvements to web standards and changing needs for drug research and development. This year's update, DrugBank 5.0, represents the most significant upgrade to the database in more than 10 years. In many cases, existing data content has grown by 100% or more over the last update. For instance, the total number of investigational drugs in the database has grown by almost 300%, the number of drug-drug interactions has grown by nearly 600% and the number of SNP-associated drug effects has grown more than 3000%. Significant improvements have been made to the quantity, quality and consistency of drug indications, drug binding data as well as drug-drug and drug-food interactions. A great deal of brand new data have also been added to DrugBank 5.0. This includes information on the influence of hundreds of drugs on metabolite levels (pharmacometabolomics), gene expression levels (pharmacotranscriptomics) and protein expression levels (pharmacoprotoemics). New data have also been added on the status of hundreds of new drug clinical trials and existing drug repurposing trials. Many other important improvements in the content, interface and performance of the DrugBank website have been made and these should greatly enhance its ease of use, utility and potential applications in many areas of pharmacological research, pharmaceutical science and drug education.
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Bases de Dados de Produtos Farmacêuticos , Interações Medicamentosas , Interações Alimento-Droga , Metaboloma/efeitos dos fármacos , Polimorfismo de Nucleotídeo Único , Transcriptoma/efeitos dos fármacos , Interface Usuário-ComputadorRESUMO
BACKGROUND: Amidst increased pressures on General Practice across England, the receptionist continues to fulfil key administrative and clinically related tasks. The need for more robust support for these key personnel to ensure they stay focussed and motivated is apparent, however, to be effective a more systematic understanding of the parameters of their work is required. Here we present a valuable insight into the tasks they fulfil, their relationship with colleagues and their organisation and their attitudes and behaviour at work collectively defined as their 'work design'. METHODS: Our aim was to quantitatively assess the various characteristics of receptionists in primary care in England using the validated Work Design Questionnaire (WDQ) a 21 point validated questionnaire, divided into four categories: task, knowledge and social characteristics and work context with a series of sub-categories within each, disseminated online and as a postal questionnaire to 100 practices nationally. RESULTS: Seventy participants completed the WDQ, 54 online and 16 using the postal questionnaire with the response rate for the latter being 3.1%. The WDQ suggested receptionists experience high levels of task variety, task significance and of information processing and knowledge demands, confirming the high cognitive load placed on receptionists by performing numerous yet significant tasks. Perhaps in relation to these substantial responsibilities a reliance on colleagues for support and feedback to help negotiate this workload was reported. CONCLUSION: The evidence of our survey suggests that the role of modern GP receptionists requires an array of skills to accommodate various administrative, communicative, problem solving, and decision-making duties. There are ways in which the role might be better supported for example devising ways to separate complex tasks to avoid the errors involved with high cognitive load, providing informal feedback, and perhaps most importantly developing training programmes.
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Medicina Geral , Relações Interpessoais , Descrição de Cargo , Recepcionistas de Consultório Médico , Atenção Primária à Saúde , Habilidades Sociais , Inquéritos e Questionários , Desempenho Profissional/normas , Atitude do Pessoal de Saúde , Inglaterra , Feminino , Medicina Geral/organização & administração , Medicina Geral/tendências , Humanos , Masculino , Recepcionistas de Consultório Médico/psicologia , Recepcionistas de Consultório Médico/normas , Pessoa de Meia-Idade , Avaliação das Necessidades , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/normas , Papel Profissional , Responsabilidade Social , Análise e Desempenho de Tarefas , Carga de Trabalho/psicologia , Carga de Trabalho/normasRESUMO
BACKGROUND: Heart failure (HF) is a common clinical syndrome, particularly in older people, and symptoms can develop gradually. The aim of this study was to explore the role of informal carers in the HF diagnostic process. METHODS: Secondary analysis of qualitative interviews with 16 participants with a new diagnosis of HF. Original interviews were conducted in the participant's home, with carers present in some cases. Interview transcripts were re-analysed using the Framework Method for themes pertaining to informal carers and how they were involved in the diagnostic process. RESULTS: Informal carers often noticed symptoms, such as breathlessness, before participants. In some cases, carers colluded with participants in normalising symptoms but over time, when symptoms failed to resolve or got worse, they encouraged participants to seek medical help. Adult children of participants commonly initiated help-seeking behaviour. During the diagnostic process, carers coordinated participants' healthcare through advocacy and organisation. Carers were keen to be informed about the diagnosis, but both participants and carers struggled to understand some aspects of the term 'heart failure'. CONCLUSIONS: Carers play a crucial role in HF diagnosis, particularly in initiating contact with healthcare services, and should be empowered to encourage people with HF symptoms to seek medical help. Improving public awareness of HF could mean informal carers are more likely to notice symptoms. The important role of carers in supporting the patient's route to diagnosis should be incorporated into future care pathways and explored in further research.
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Cuidadores/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Insuficiência Cardíaca/diagnóstico , Aceitação pelo Paciente de Cuidados de Saúde , Idoso , Conscientização , Compreensão , Efeitos Psicossociais da Doença , Feminino , Nível de Saúde , Insuficiência Cardíaca/complicações , Insuficiência Cardíaca/fisiopatologia , Insuficiência Cardíaca/psicologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Defesa do Paciente , Pesquisa Qualitativa , Apoio SocialRESUMO
Proteolysis within the lipid bilayer is poorly understood, in particular the regulation of substrate cleavage. Rhomboids are a family of ubiquitous intramembrane serine proteases that harbour a buried active site and are known to cleave transmembrane substrates with broad specificity. In vitro gel and Förster resonance energy transfer (FRET)-based kinetic assays were developed to analyse cleavage of the transmembrane substrate psTatA (TatA from Providencia stuartii). We demonstrate significant differences in catalytic efficiency (kcat/K0.5) values for transmembrane substrate psTatA (TatA from Providencia stuartii) cleavage for three rhomboids: AarA from P. stuartii, ecGlpG from Escherichia coli and hiGlpG from Haemophilus influenzae demonstrating that rhomboids specifically recognize this substrate. Furthermore, binding of psTatA occurs with positive cooperativity. Competitive binding studies reveal an exosite-mediated mode of substrate binding, indicating allostery plays a role in substrate catalysis. We reveal that exosite formation is dependent on the oligomeric state of rhomboids, and when dimers are dissociated, allosteric substrate activation is not observed. We present a novel mechanism for specific substrate cleavage involving several dynamic processes including positive cooperativity and homotropic allostery for this interesting class of intramembrane proteases.
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Regulação Alostérica , Membrana Celular/enzimologia , Escherichia coli/enzimologia , Haemophilus influenzae/enzimologia , Proteínas de Membrana/metabolismo , Providencia/enzimologia , Serina Proteases/metabolismo , Membrana Celular/metabolismo , Escherichia coli/metabolismo , Transferência Ressonante de Energia de Fluorescência , Haemophilus influenzae/metabolismo , Cinética , Ligação Proteica , Proteólise , Providencia/metabolismoRESUMO
Background: Heart failure is a common long term condition affecting around 900 000 people in the UK and patients commonly present to primary care. The prognosis of patients with a code of heart failure in their primary care record is unknown. Objective: The study sought to determine the overall survival rates for patients with heart failure in a primary care population from the time of diagnosis. Methods: Survival analysis was carried out using UK primary care records from The Health Improvement Network (THIN) between 1 January 1998 and 31 December 2012. Patients age 45 or over with a first diagnostic label of heart failure were matched by age, sex and practice to people without heart failure. Outcome was death in the heart failure and no heart failure cohorts. Kaplan-Meier curves were used to compare survival. Age-specific survival rates at 1, 5 and 10 years were determined for men and women with heart failure. Survival rates by year of diagnosis and case definition were also calculated. Results: During the study period, 54313 patients had a first diagnostic code of heart failure. Overall survival rates for the heart failure group were 81.3% (95%CI 80.9-81.6), 51.5% (95%CI 51.0-52.0) and 29.5% (95%CI 28.9-30.2) at 1, 5 and 10 years respectively and did not change over time. Conclusions: In a primary care population, the survival of patients diagnosed with heart failure did not improved over time. Further research is needed to explain these trends and to find strategies to improve outlook.
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Insuficiência Cardíaca/diagnóstico , Atenção Primária à Saúde , Análise de Sobrevida , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Feminino , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/mortalidade , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Reino UnidoRESUMO
This article explores the relationship between cancer survivors' use of self-management practices and their search for normality. Using Frank's illness narratives and other theoretical literature on normality in chronic illness, it draws on findings from a qualitative study to explore different ways cancer survivors use self-management practices to re-establish normality in their lives post-cancer. The findings suggest that "normality" represents different things to cancer survivors. We suggest that normality in survivorship is not a static concept but is fluid, and at certain times, cancer survivors may display some or all of these different versions of normality. The findings show that self-management practices can help cancer survivors experiment with different health and lifestyle processes to help support their "normal" daily lifestyle activities, quality of life, and well-being.
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Sobreviventes de Câncer/psicologia , Autogestão/psicologia , Adaptação Psicológica , Doença Crônica , Feminino , Estilo de Vida Saudável , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de Vida , Reino UnidoRESUMO
BACKGROUND: Maternal request for Caesarean section is controversial and yet the NICE Caesarean section Guideline recommends that that if this is requested, following discussion of the risks and benefits, women should be supported in their choice. There was a desire to improve the pathway at Birmingham Women's NHS Foundation Trust. METHODS: Experience-based co-design methodology uses service user and clinicians experiences collected using qualitative methods to jointly re-design services. Firstly semi-structured interviews were conducted to elicit the views and experiences of health care professionals and women who requested Caesarean section (with and without medical indication). Analysis identified key themes arising from the health care professionals' interviews and 'touch points' (key moments or events related to the experience of care) arising from the interviews with women.. Separate workshops were then held with each group to ensure these resonated and to identify key areas for service improvement. At the first joint workshop a pathway using 'audio clips' demonstrating women's agreed 'touch points' prompted discussion and joint working began to change the pathway. A final second workshop was held to agree changes to the pathway. RESULTS: Interviews were conducted with health care professionals (n = 22, 10 consultant obstetricians and 12 midwives) and women (n = 15). The women's 'touch points' included repetition of request, delay in the decision for Caesarean section to be made, feeling judged, and that information was poor with similar findings identified from the health care professionals. Joint working resulted in a revised pathway for women who request Caesarean section. Changes to the pathway for women as a result of the work include written information about 'The way your baby may be born' which is given to the woman followed by a discussion about mode of birth around the 16 week appointment. If the woman wishes to have a Caesarean section, referral is made to appropriate health care professionals (e.g., Consultant Midwife, counsellor) only if support and information would be useful. If Caesarean section is requested, woman is referred to a consultant obstetrician for an appointment at 20/40, with a decision by 28/40. Recording this in the notes minimises repeated challenge described by women. Final consent and timing of Caesarean section remain as recommended. CONCLUSION: This has resulted in changes to the pathway agreed by a co-design process and which are acceptable to both health care professionals and women. Use of such methodologies should be considered more frequently when implementing service change.
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Cesárea , Procedimentos Clínicos , Tocologia/métodos , Obstetrícia/métodos , Adulto , Atitude do Pessoal de Saúde , Congressos como Assunto , Feminino , Humanos , Consentimento Livre e Esclarecido , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Preferência do Paciente , Gravidez , Cuidado Pré-Natal/métodos , Encaminhamento e ConsultaRESUMO
OBJECTIVE: The global prevalence of non-communicable diseases (NCDs), such as diabetes mellitus and coronary heart disease, continues to rise. Internationally, people of South Asian origin (i.e. by birth or heritage) are much more likely to develop and live with NCDs compared to the general population. The South Asian diaspora population is highly heterogeneous, varying by socioeconomic status, migration history, religion and ethnicity. This article reports the findings of a study to explore the types of support accessed by Punjabi Sikhs living in Birmingham and the Black Country, UK, who were living with NCDs. DESIGN: The study sought to develop a greater understanding of past experiences of accessing support and the importance of relationships in the mobilisation of resources for self-management. It was nested within a larger programme of research which explored attitudes to prevention of chronic diseases in local communities in the region. Seventeen Punjabi Sikh men and women were recruited through purposive sampling. Narrative interviews were conducted and analysed by the research team. Sociological theories on systems of support and social relations were consulted to inform the interpretation of data. RESULTS: The study findings suggest that participants interpreted chronic disease self-management in relation to four primary systems of support: health services for disease management; multiple sources of care, including traditional Indian medicines and the Internet, for symptom management; community groups for lifestyle management; and the family for emotional and physical care. Within these systems of support, participants identified barriers and facilitators to the maintenance of a healthy lifestyle. We focus on intra-group diversity; exploring the intersection of views and experiences by age, gender, generation and caste. CONCLUSION: The findings have implications for the design and delivery of primary care and community services which support the prevention and management of NCDs in an increasingly diverse population.
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Doença Crônica/psicologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Autogestão/métodos , Autogestão/psicologia , Apoio Social , Adolescente , Adulto , Idoso , Doença Crônica/terapia , Terapias Complementares , Emigrantes e Imigrantes , Família/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Siquim/etnologia , Medicina Estatal , Reino Unido , Adulto JovemRESUMO
BACKGROUND: Domiciliary non-invasive ventilation may be used in palliative care of patients with chronic obstructive pulmonary disease, although there is uncertainty regarding effect on quality of life. AIM: Explore experiences of domiciliary non-invasive ventilation in chronic obstructive pulmonary disease, to understand decision-making processes and improve future palliative care. DESIGN: Qualitative interview study, based on constructivist grounded theory, and using the framework method for data management and analysis. PARTICIPANTS: 20 chronic obstructive pulmonary disease patients, 4 carers and 15 healthcare professionals. RESULTS: Most patients had very severe chronic obstructive pulmonary disease. Data were categorised into four domains - clinical, technical, socio-economic and experiential. Healthcare professionals felt uncertain regarding clinical evidence, emphasising social support and tolerance as deciding factors in non-invasive ventilation use. Conversely, patients reported symptomatic benefit, which generally outweighed negative experiences and led to continued use. Healthcare professionals felt that patients chose to be on non-invasive ventilation; however, most patients felt that they had no choice as healthcare professionals recommended non-invasive ventilation or their poor health mandated it. CONCLUSIONS: Our study identifies 'adapting to non-invasive ventilation' as the central process enabling long-term use in palliative care, although the way in which this is approached by healthcare professionals and patients does not always converge. We present ideas emerging from the data on potential interventions to improve patient experience and adaptation.
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Adaptação Psicológica , Serviços de Assistência Domiciliar/organização & administração , Ventilação não Invasiva/psicologia , Cuidados Paliativos/organização & administração , Doença Pulmonar Obstrutiva Crônica/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Cuidadores/psicologia , Feminino , Teoria Fundamentada , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Doença Pulmonar Obstrutiva Crônica/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Apoio Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Self-management education is at the forefront of addressing the increasing prevalence of chronic diseases. For those at greatest risk, such as minority-ethnic and/or socio-economically deprived groups, self-management education can be culturally-tailored to encourage behavioural change. Yet, the application of culturally appropriate material and expertise within health promotion services continues to be debated. We critique the design, implementation, and delivery of a culturally-tailored self-management intervention, with particular focus on the experiences of lay educators. METHODS: A mixed methods qualitative evaluation was undertaken to understand self-management service provision to culturally diverse communities (i.e. how components such as lay workers, group-based design, and culturally-appropriate educational material are intended to encourage behavioural change). We interviewed lay educators delivering the Chronic Disease Educator programme along with attendees, whilst observing workshops. Data were thematically analysed using a content-based constant comparison approach through a number of interpretative analytical stages. RESULTS: Lay educators felt part of the local community, relating to attendees from different races and ethnicities. However, lay educators faced challenges when addressing health beliefs and changing lifestyle practices. Culturally-tailored components aided communication, with educator's cultural awareness leading to close relationships with attendees, while the group-based design facilitated discussions of the emotional impact of illness. CONCLUSIONS: Lay educators bring with them a number of nuanced skills and knowledge when delivering self-management education. The development and training required for this role is inhibited by financial constraints at policy-level. The interpretation of being from the 'community' links with the identity and status of the lay role, overlapping notions of race, ethnicity, and language.
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Competência Cultural , Educação de Pacientes como Assunto , Autocuidado , Adulto , Idoso , Doença Crônica , Comunicação , Parto Obstétrico , Gerenciamento Clínico , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Grupos Minoritários , Gravidez , Pesquisa Qualitativa , Adulto JovemRESUMO
The need for mixed methods research in answering health care questions is becoming increasingly recognized because of the complexity of factors that affect health outcomes. In this article, we argue for the value of using a qualitatively driven mixed method approach for identifying and answering clinically relevant research questions. This argument is illustrated by findings from a study on the self-management practices of cancer survivors and the exploration of one particular clinically relevant finding about higher uptake of self-management in cancer survivors who had received chemotherapy treatment compared with those who have not. A cross-sectional study generated findings that formed the basis for the qualitative study, by informing the purposive sampling strategy and generating new qualitative research questions. Using a quantitative research component to supplement a qualitative study can enhance the generalizability and clinical relevance of the findings and produce detailed, contextualized, and rich answers to research questions that would be unachievable through quantitative or qualitative methods alone.
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Estudos de Avaliação como Assunto , Pesquisa sobre Serviços de Saúde/estatística & dados numéricos , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Pesquisa Qualitativa , Projetos de Pesquisa , Autocuidado/psicologia , Inquéritos e Questionários , Sobreviventes/estatística & dados numéricos , Adulto , Idoso , Estudos Transversais , Tomada de Decisões , Inglaterra , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Entrevista Psicológica , Masculino , Pessoa de Meia-Idade , Motivação , Equipe de Assistência ao Paciente , Autocuidado/estatística & dados numéricos , Sobreviventes/psicologia , Adulto JovemRESUMO
PURPOSE: Patient-centred care and patient involvement are increasingly central concepts in health policy in the UK and elsewhere. However, there is little consensus regarding their definition or how to achieve "patient-centred" care in everyday practice or how to involve patients in service redesign initiatives. The purpose of this paper is to explore these issues from the perspective of key stakeholders within National Health Service (NHS) hospitals in the UK. DESIGN/METHODOLOGY/APPROACH: Semi-structured interviews, covering a range of topics related to service redesign, were conducted with 77 key stakeholders across three NHS Trusts in the West Midlands. In total, 20 of these stakeholders were re-interviewed 18 months later. Data were managed and analysed using the Framework Method. FINDINGS: While patient-centred care and patient involvement were regularly cited as important to the stakeholders, a gap persisted between values and reported practice. This gap is explained through close examination of the ways in which the concepts were used by stakeholders, and identifying the way in which they were adapted to fit other organizational priorities. The value placed on positive subjective experience changed to concerns about objective measurement of the patients as they move through the system. RESEARCH LIMITATIONS/IMPLICATIONS: Increased awareness and reflection on the conceptual tensions between objective processes and subjective experiences could highlight reasons why patient-centred values fail to translate into improved practice. ORIGINALITY/VALUE: The paper describes and explains a previously unarticulated tension in health organisations between values and practice in patient centred care and patient involvement in service redesign.
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Atitude do Pessoal de Saúde , Participação do Paciente , Assistência Centrada no Paciente/organização & administração , Desenvolvimento de Programas , Administradores Hospitalares/psicologia , Hospitais Públicos , Humanos , Corpo Clínico Hospitalar/psicologia , Procurador/psicologia , Pesquisa Qualitativa , Medicina Estatal , Reino UnidoRESUMO
BACKGROUND: Modern general practice is characterised by increased demand and growing multi-disciplinarity, including ring-fenced funding for additional non-clinical roles. However, for practice receptionists training has remained unchanged for decades, yet primary care is under greater pressure than ever with receptionists becoming a growing focal point of abuse and unprecedented numbers leaving the role. AIM: To present the evidence of the range of tasks that receptionists continue to perform, describing their impact on primary care delivery and how the role might be better supported. METHOD: We conducted a systematic review of evidence contained in the major medical databases (Medline/PubMed, CINAHL, ASSIA, Cochrane Library, and EMBASE) up until July 2023, including hand searches of the bibliographies of included studies. RESULTS: We identified 28 studies which we grouped into three themes: Service delivery, confirming the continuing role of receptionists in providing administrative support alongside clinical tasks of prioritising patients for consultations, facilitating repeat prescriptions, and communicating blood test results; Patient attitudes describing how patient's lacked trust in receptionists viewed as unqualified and unnecessarily obstructive; Finally, in considering Receptionist experience, the contrast between their confidence in performing administrative roles and the anxiety induced from the clinically related tasks was described, particularly the mounting pressure from patients to meet their preferences for clinician appointments. CONCLUSION: Though confident performing administrative tasks, receptionists described the uncertainty and anxiety when providing clinically oriented support or managing patients when their requests for appointments could not be met. More appropriate training or professionalisation might improve staff retainment.
RESUMO
OBJECTIVES: Community-based arts interventions have the potential to support contextually relevant nurturing care programmes and policies that adapt to different settings. Understanding the distinctive features of using the arts in local, culturally specific ways in low/middle-income countries (LMICs); how this varies by context; and gaining a better understanding of the perspectives on desirable outcomes for communities is important evidence that this review generates. DESIGN: We conducted a realist review of papers that covered outcomes related to child health or development (0-5 years) AND arts-based approaches AND community-based, participatory approaches AND based in LMICs using a range of databases and other networks. A coding framework was developed covering context, intervention, outcomes, mechanisms, study, sustainability, transferability and scalability. RESULTS: The included papers reported 18 unique interventions. Interventions covered 14 countries, with evidence lacking for South America, Arab countries and parts of Africa. Lead authors came from mostly clinical science-based disciplines and from institutions in a different country to the country/countries studied. Intended outcomes from interventions included clinical, health systems/organisation, changes in practices/behaviours/knowledge/attitudes, and wider social and educational goals. We identified three demi-regularities (semi-predictable patterns or pathways of programme functioning): participatory design based on valuing different sources of expertise; dynamic adaptation of intervention to context; and community participation in arts-based approaches. CONCLUSIONS: Our findings suggest that arts-based, nurturing care interventions have greater potential when they include local knowledge, embed into existing infrastructures and there is a clear plan for ongoing resourcing of the intervention. Studies with better documentation of the lessons learnt, regarding the intervention delivery process and the power dynamics involved, are needed to better understand what works, for whom and in which contexts.
Assuntos
Países em Desenvolvimento , Humanos , Lactente , Pré-Escolar , Desenvolvimento Infantil , Recém-Nascido , Arteterapia/métodosRESUMO
BACKGROUND: Within primary care there exists a cohort of patients misdiagnosed with Chronic Obstructive Pulmonary Disease (COPD). Misdiagnosis can have a detrimental impact on healthcare finances and patient health and so understanding the factors leading to misdiagnosis is crucial in order to reduce misdiagnosis in the future. The objective of this study is to understand and explore the perceived causes of COPD misdiagnosis in primary care. METHODS: A sequential mixed methods study, quantifying prevalence and features of patients misdiagnosed with COPD in primary care followed by a qualitative analysis to explore perceived causes of misdiagnosis. Quantitative data was collected for 206 patients identified as misdiagnosed with COPD within the INTEGR COPD study (NCT03482700). Qualitative data collected from 21 healthcare professionals involved in providing COPD care and 8 misdiagnosed patients who were recruited using a maximum variation purposive sampling. RESULTS: Misinterpretation of spirometry results was the prevailing factor leading to patients initially being misdiagnosed with COPD, affecting 59% of misdiagnosed patients in this cohort. Of the 99 patients who were investigated for their underlying diagnosis; 41% had normal spirometry and 40% had asthma. Further investigation through qualitative methodology uncovered reluctance to challenge historical misdiagnoses and challenges in differential diagnosis as the underlying explanations for COPD misdiagnosis in this cohort. CONCLUSIONS: Patients historically diagnosed with COPD without spirometric evidence are at risk of remaining labelled and treated for COPD despite non-obstructive respiratory physiology, leading to a persistent cohort of patients misdiagnosed with COPD in primary care. The lack of spirometry services during and after the COVID19 pandemic in primary care risks adding to the cohort of misdiagnosed patients. Support from respiratory specialists can potentially help to reduce the prevalence of COPD misdiagnosis in primary care. TRIAL REGISTRATION: NCT03482700.
Assuntos
Asma , Doença Pulmonar Obstrutiva Crônica , Humanos , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Projetos de Pesquisa , Erros de Diagnóstico , Atenção Primária à SaúdeRESUMO
BACKGROUND: The Framework Method is becoming an increasingly popular approach to the management and analysis of qualitative data in health research. However, there is confusion about its potential application and limitations. DISCUSSION: The article discusses when it is appropriate to adopt the Framework Method and explains the procedure for using it in multi-disciplinary health research teams, or those that involve clinicians, patients and lay people. The stages of the method are illustrated using examples from a published study. SUMMARY: Used effectively, with the leadership of an experienced qualitative researcher, the Framework Method is a systematic and flexible approach to analysing qualitative data and is appropriate for use in research teams even where not all members have previous experience of conducting qualitative research.