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Copyright \u00a9 2016 John Wiley & Sons. Data obtained during the care of people with diabetes mellitus may be used to advance research, improve quality, encourage innovation and support better self-care. However, the perspective of people living with diabetes is less well understood. This study examines the views of people with diabetes regarding access to electronic health records (EHRs) for health care and research. Survey data from a sub-group of 404 individuals with diabetes were analysed from a dataset of 5331 West London participants randomly sampled in a cross-sectional survey. These findings were explored in more detail in a focus group discussion involving people with diabetes. Sixty-seven percent of people with diabetes would support the inclusion of their full records on a national EHR for purposes of personal health provision. The vast majority (91%) would prefer to have access to their own full medical history rather than a truncated version. Seventy-nine percent said they would allow their EHR to be used for research: 51% allowing their records to be shared without identifiers and 28% being supportive of access to their identifiable information. A number of themes emerged from the focus group discussion on integrated EHRs, including expectations for improved communication with health professionals, increased participation in the consultation process, responsibility for self-care and data sharing for the greater good. In conclusion, wider sharing of health information may address some of the challenges diabetes care entails, although striking a balance between information fragmentation and sharing remains crucial to improve health, research and quality outcomes.
\n \n\n \n \n\u00a9 The Author 2017. Published by Oxford University Press on behalf of the British Society for Antimicrobial Chemotherapy. Background: Antimicrobial resistance has led to widespread implementation of interventions for appropriate prescribing. However, such interventions are often adopted without an adequate understanding of the challenges facing doctors-in-training as key prescribers. Methods: The review followed a realist, theory-driven approach to synthesizing qualitative, quantitative and mixed-methods literature. Consistent with realist review quality standards, articles retrieved from electronic databases were systematically screened and analysed to elicit explanations of antimicrobial prescribing behaviours. These explanations were consolidated into a programme theory drawing on social science and learning theory, and shaped though input from patients and practitioners. Results: By synthesizing data from 131 articles, the review highlights the complex social and professional dynamics underlying antimicrobial prescribing decisions of doctors-in-training. The analysis shows how doctors-intraining often operate within challenging contexts (hierarchical relationships, powerful prescribing norms, unclear roles and responsibilities, implicit expectations about knowledge levels, uncertainty about application of knowledge in practice) where they prioritize particular responses (fear of criticism and individual responsibility, managing one's reputation and position in the team, appearing competent). These complex dynamics explain how and why doctors-in-training decide to: (i) follow senior clinicians' prescribing habits; (ii) take (or not) into account prescribing aids, advice from other health professionals or patient expectations; and (iii) ask questions or challenge decisions. This increased understanding allows for targeted tailoring, design and implementation of antimicrobial prescribing interventions. Conclusions: This review contributes to a better understanding of how antimicrobial prescribing interventions for doctors-in-training can be embedded more successfully in the hierarchical and inter-professional dynamics of different healthcare settings.
\n \n\n \n \n\u00a9 2016 Morris et al. Background: Provision of written information may improve awareness of cancer symptoms and encourage timely presentation in primary care. This study assessed changes in symptom knowledge, perceived barriers to help-seeking, anxiety and intention to seek help, following exposure to a leaflet to raise awareness of gynaecological cancer symptoms. Methods: Women (N = 484) completed questionnaires before and after reading the leaflet. The primary outcome was change in anticipated time to help-seeking for 12 symptoms. Changes in symptom knowledge, barriers and anxiety, and their association with prompt help-seeking were evaluated using Wilcoxon signed rank tests and logistic regression analyses. Results: After reading the leaflet, symptom knowledge increased (p < 0.001), and perceived barriers (p < 0.001) and anxiety (p = 0.008) decreased. The number of symptoms for which women anticipated seeking help promptly increased (p < 0.001). Changes in knowledge (OR 4.21, 95 % CI 1.95-9.13) and perceived barriers (OR 4.60, 95 % CI 1.91-11.04) were independently associated with increased help-seeking. Conclusion: Increased symptom knowledge and lowered perceived barriers were related to increased prompt anticipated help-seeking. This occurred without an increase in anxiety. This intervention is effective in altering knowledge, beliefs and help-seeking intentions for gynaecological cancer symptoms, at least in the short-term, and should be trialled in primary care.
\n \n\n \n \nBACKGROUND: The act of detecting bodily changes is a pre-requisite for subsequent responses to symptoms, such as seeking medical help. This is the first study to explore associations between self-reported body vigilance and help-seeking in a community sample currently experiencing cancer 'alarm' symptoms. METHODS: Using a cross-sectional study design, a 'health survey' was mailed through primary care practices to 4913 UK adults (age \u226550\u00a0years, no cancer diagnosis), asking about symptom experiences and medical help-seeking over the previous three months. Body vigilance, cancer worry and current illness were assessed with a small number of self-report items derived from existing measures. RESULTS: The response rate was 42% (N\u2009=\u20092042). Almost half the respondents (936/2042; 46%) experienced at least one cancer alarm symptom. Results from logistic regression analysis revealed that paying more attention to bodily changes was significantly associated with help-seeking for cancer symptoms (OR\u2009=\u20091.44; 1.06-1.97), after controlling for socio-demographics, current illness and cancer worry. Being more sensitive to bodily changes was not significantly associated with help-seeking. CONCLUSIONS: Respondents who paid attention to their bodily changes were more likely to seek help for their symptoms. Although the use of a cross-sectional study design and the limited assessment of key variables preclude any firm conclusions, encouraging people to be body vigilant may contribute towards earlier cancer diagnosis. More needs to be understood about the impact this might have on cancer-related anxiety.
\n \n\n \n \nBackground The majority (>85%) of lung cancer cases are linked with smoking, and prognosis is poor because it is often diagnosed at a late stage. One contributor to late-stage diagnosis could be patient delay in help-seeking. We investigated the help-seeking behaviour of smokers and non-smokers for a recent lung cancer alarm symptom. Methods A health survey was sent to 4913 men and women aged >50 years through through General Practice. It included questions on symptoms experienced in the past 3 months (from a checklist), help-seeking (Yes/ No) for each symptom and demographic characteristics including smoking status. Univariable and multivariable binary logistic regression analyses were used to assess the association between smoking status and helpseeking for a cough or hoarseness. Results Among 2042 participants (42% response rate), 280 (14%) reported 'cough or hoarseness' in the past 3 months; of whom 22% were current smokers. Being a smoker was associated with reduced likelihood of help-seeking (OR 0.44; 95% CI 0.23 to 0.83), even after adjusting for demographic factors (OR 0.46; 95% CI 0.21 to 1.00). Conclusions Delay in help-seeking in smokers for a symptom that is potentially indicative of lung cancer is a cause for concern. Future research could usefully address the psychological mechanisms through which help-seeking in smokers is hindered.
\n \n\n \n \nBACKGROUND: Encouraging prompt help-seeking for cancer symptoms can help shorten the patient interval and improve timely diagnosis. We explored factors associated with help-seeking in a primary care sample reporting 'alarm' symptoms. METHODS: A questionnaire was mailed to 9771 adults (\u2a7e 50 years of age and no cancer diagnosis) and 3766 (39%) returned it. Our sample included 1732 adults reporting at least one cancer 'alarm' symptom; with a total of 2726 symptoms. Respondents completed questions relating to help-seeking, demographic and symptom characteristics (e.g., type, knowledge, concern, interference and attribution). RESULTS: Over a third of people who reported a cancer 'alarm' symptom in the past 3 months had not sought help from a doctor. An unexplained lump (odds ratio (OR) 2.46, 1.42-4.26) and persistent unexplained pain (OR 1.79, 1.19-2.69) were associated with increased likelihood of help-seeking. Symptom concern (OR 3.10, 2.19-4.39) and interference (OR 3.06, 2.15-4.36) were associated with an increased likelihood of seeking help independently of symptom type. People who were not working (OR 1.41, 1.09-1.83), were married/cohabiting rather than single (OR 1.38, 1.10-1.74) and were older (60-69 years) rather than younger (50-59 years; OR 1.33, 1.02-1.75) were more likely to have sought help. CONCLUSIONS: Our findings highlighted symptom type and symptom characteristics as key drivers of help-seeking. We also found that there may be specific demographic groups where encouraging help-seeking might be warranted.
\n \n\n \n \n\u00a9 2016 British Journal of General Practice. Background : Worrying about wasting GP time is frequently cited as a barrier to help-seeking for cancer symptoms. Aim : To explore the circumstances under which individuals feel that they are wasting GP time. Design and setting : Community-based, qualitative interview studies that took place in London, the South East and the North West of England. Method : Interviewees (n = 62) were recruited from a sample (n = 2042) of adults aged \u226550 years, who completed a 'health survey' that included a list of cancer 'alarm' symptoms. Individuals who reported symptoms at baseline that were still present at the 3-month follow-up (n = 271), and who had also consented to be contacted (n = 215), constituted the pool of people invited for interview. Analyses focused on accounts of worrying about wasting GP time. Results : Participants were worried about wasting GP time when time constraints were visible, while dismissive interactions with their GP induced a worry of unnecessary help-seeking. Many felt that symptoms that were not persistent, worsening, or life-threatening did not warrant GP attention. Additionally, patients considered it time-wasting when they perceived attention from nurses or pharmacists to be sufficient, or when appointment structures (for example, 'one issue per visit') were not adhered to. Close relationships with GPs eased worries about time-wasting, while some patients saw GPs as fulfilling a service financed by taxpayers. Conclusion : Worrying about wasting GP time is a complex barrier to help-seeking. GP time and resource scarcity, symptom gravity, appointment etiquette, and previous GP interactions contribute to increasing worries. Friendly GP relationships, economic reasoning, and a focus on the GP's responsibilities as a medical professional reduce this worry.
\n \n\n \n \nBACKGROUND: Published descriptions of group-based behaviour-change interventions (GB-BCIs) often omit design and delivery features specific to the group setting. This impedes the ability to compare behaviour-change interventions, synthesise evidence on their effectiveness and replicate effective interventions. The aim of this study was to develop a checklist of elements that should be described to ensure adequate reporting of GB-BCIs. METHODS: A range of characteristics needed to replicate GB-BCIs were extracted from the literature and precisely defined. An abbreviated checklist and a coder manual were developed, pilot tested and refined. The final checklist and coder manual were used to identify the presence or absence of specified reporting elements in 30 published descriptions of GB-BCIs by two independent coders. Reliability of coding was assessed. RESULTS: The checklist comprises 26 essential reporting elements, covering intervention design, intervention content, participant characteristics, and facilitator characteristics. Inter-rater reliability for identification of reporting elements was high (95% agreement, Mean AC1 = 0.89). CONCLUSION: The checklist is a practical tool that can be used, alongside other reporting guidelines, to ensure comprehensive description and to assess reporting quality of GB-BCIs. It can also be helpful for designing group-based health interventions.
\n \n\n \n \nIntroduction Mental ill-health is prevalent across all groups of health professionals and this is of great concern in many countries. In the UK, the mental health of the National Health Service (NHS) workforce is a major healthcare issue, leading to presenteeism, absenteeism and loss of staff from the workforce. Most interventions targeting doctors aim to increase their 'productivity' and 'resilience', placing responsibility for good mental health with doctors themselves and neglecting the organisational and structural contexts that may have a detrimental effect on doctors' well-being. There is a need for approaches that are sensitive to the contextual complexities of mental ill-health in doctors, and that do not treat doctors as a uniform body, but allow distinctions to account for particular characteristics, such as specialty, career stage and different working environments. Methods and analysis Our project aims to understand how, why and in what contexts support interventions can be designed to minimise the incidence of doctors' mental ill-health. We will conduct a realist review-A form of theory-driven interpretative systematic review-of interventions, drawing on diverse literature sources. The review will iteratively progress through five steps: (1) locate existing theories; (2) search for evidence; (3) select articles; (4) extract and organise data and (5) synthesise evidence and draw conclusions. The analysis will summarise how, why and in what circumstances doctors' mental ill-health is likely to develop and what can remediate the situation. Throughout the project, we will also engage iteratively with diverse stakeholders in order to produce actionable theory. Ethics and dissemination Ethical approval is not required for our review. Our dissemination strategy will be participatory. Tailored outputs will be targeted to: policy makers; NHS employers and healthcare leaders; team leaders; support organisations; doctors experiencing mental ill-health, their families and colleagues.
\n \n\n \n \n\u00a9 2019 The Author(s). Background: Parent carers of disabled children are at increased risk of mental and physical health problems. They often experience challenges to maintaining good health which have implications for their well-being and their ability to care for their children. In response to these needs, researchers and parent carers developed the Healthy Parent Carers (HPC) programme. It is a peer-led, group-based intervention that promotes behaviours associated with health and well-being. The aims of this trial are to assess the acceptability of the HPC programme and the feasibility of its delivery in the community and to assess the feasibility and acceptability of the design of the definitive trial to evaluate the programme's effectiveness and cost-effectiveness. Methods: We will establish six research sites and train facilitators to deliver the manualised intervention. Parent carers of children with special educational needs and disabilities will be individually randomised, stratified by group delivery site, to either take part in a group programme and online resources (intervention) or to receive access to the online resources only (control). Measures of mental health; well-being; health-related quality of life; health behaviours; patient activation; protective factors such as resilience, social connections, and practical support; and use of health care, social care, and wider societal resources will be collected before randomisation (baseline), immediately post-intervention, and 6 months later. Recruitment of participants, adherence to the programme, and the dose received will be assessed. Group sessions will be audio-recorded to evaluate the fidelity of delivery and participant engagement. Participants' and facilitators' feedback on the programme content and delivery, their experience, and the acceptability of the outcome measures and trial design will be collected through feedback forms, interviews, and focus groups. Discussion: This trial will assess whether the programme delivery and evaluative trial design are feasible, to inform whether to progress to a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the Healthy Parent Carers programme. Trial registration: ISRCTN, ISRCTN151144652, registered on 25 October 2018; ClinicalTrials.gov, NCT03705221, registered on 15 October 2018.
\n \n\n \n \n\u00a9 2019, \u00a9 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. Group-based interventions are widely used to promote health-related behaviour change. While processes operating in groups have been extensively described, it remains unclear how behaviour change is generated in group-based health-related behaviour-change interventions. Understanding how such interventions facilitate change is important to guide intervention design and process evaluations. We employed a mixed-methods approach to identify, map and define change processes operating in group-based behaviour-change interventions. We reviewed multidisciplinary literature on group dynamics, taxonomies of change technique categories, and measures of group processes. Using weight-loss groups as an exemplar, we also reviewed qualitative studies of participants\u2019 experiences and coded transcripts of 38 group sessions from three weight-loss interventions. Finally, we consulted group participants, facilitators and researchers about our developing synthesis of findings. The resulting \u2018Mechanisms of Action in Group-based Interventions\u2019 (MAGI) framework comprises six overarching categories: (1) group intervention design features, (2) facilitation techniques, (3) group dynamic and development processes, (4) inter-personal change processes, (5) selective intra-personal change processes operating in groups, and (6) contextual influences. The framework provides theoretical explanations of how change occurs in group-based behaviour-change interventions and can be applied to optimise their design and delivery, and to guide evaluation, facilitator training and further research.
\n \n\n \n \nBackground: The development and implementation of electronic health records (EHRs) remains an international challenge. Better understanding of patient and public attitudes and the factors that influence overall levels of support toward EHRs is needed to inform policy. Objective: To explore patient and public attitudes toward integrated EHRs used simultaneously for health care provision, planning and policy, and health research. Methods: Cross-sectional questionnaire survey administered to patients and members of the public who were recruited from a stratified cluster random sample of 8 outpatient clinics of a major teaching hospital and 8 general practices in London (United Kingdom). Results: 5331 patients and members of the public responded to the survey, with 2857 providing complete data for the analysis presented here. There were moderately high levels of support for integrated EHRs used simultaneously for health care provision planning and policy, and health research (1785/2857, 62.47%), while 27.93% (798/2857) of participants reported being undecided about whether or not they would support EHR use. There were higher levels of support for specific uses of EHRs. Most participants were in favor of EHRs for personal health care provision (2563/2857, 89.71%), with 66.75% (1907/2857) stating that they would prefer their complete, rather than limited, medical history to be included. Of those \"undecided\" about integrated EHRs, 87.2% (696/798) were nevertheless in favor of sharing their full (373/798, 46.7%) or limited (323/798, 40.5%) records for health provision purposes. There were similar high levels of support for use of EHRs in health services policy and planning (2274/2857, 79.59%) and research (2325/2857, 81.38%), although 59.75% (1707/2857) and 67.10% (1917/2857) of respondents respectively would prefer their personal identifiers to be removed. Multivariable analysis showed levels of overall support for EHRs decreasing with age. Respondents self-identifying as Black British were more likely to report being undecided or unsupportive of national EHRs. Frequent health services users were more likely to report being supportive than undecided. Conclusions: Despite previous difficulties with National Health Service (NHS) technology projects, patients and the public generally support the development of integrated EHRs for health care provision, planning and policy, and health research. This support, however, varies between social groups and is not unqualified; relevant safeguards must be in place and patients should be guided in their decision-making process, including increased awareness about the benefits of EHRs for secondary uses.
\n \n\n \n \nPrivacy is a much discussed and politically charged topic in contemporary healthcare. Yet, studying the actual privacy practices of healthcare professionals and patients remains extremely challenging. In this paper we reflect on our experiences using qualitative methods in two projects on HIV care, the first researching internet use by a particular group of patients, and the second looking at issues of information technology integration in hospitals. Our aim in doing so is to highlight some of the opportunities and challenges involved in including an explicit focus on 'context' in qualitative privacy research in healthcare. We suggest that adopting a more reflexive approach to the way methods are used in relation to 'context' in privacy-related HCI research provides opportunities for understanding how different 'privacy contexts' are enacted in and through our research practices in different environments. \u00a9 2013 Elsevier Ltd. All rights reserved.
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