Taking a critical stance towards mixed methods research: A cross-disciplinary qualitative secondary analysis of researchers' views.
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ABSTRACT:
SUBMITTER: Fabregues S
PROVIDER: S-EPMC8270395 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:With large-scale genome sequencing initiatives underway, vast amounts of genomic data are being generated. Results-including secondary findings (SF)-are being returned, although policies around generation and management remain inconsistent. In order to inform relevant policy, it is essential that the views of stakeholders be considered-including participants who have made decisions about SF since the wider debate began. We conducted semi-structured interviews with sixteen rare disease patients and parents enroled in genome sequencing to explore views towards SF. Informed by extensive contact with the healthcare system, interviewees demonstrated high levels of understanding of genetic testing and held pragmatic views: many are content not knowing SF. Interviewees expressed trust in the system and healthcare providers, as well as an appreciation of limited resources; acknowledging existing disease burden, many preferred to focus on their primary condition. Many demonstrated an expectation for recontact and assumed the possibility of later access to initially declined SF. In the absence of such an infrastructure, it is important that responsibilities for recontact are delineated, expectations are addressed, and the long-term impact of decisions is made clear during consent. In addition, some interviewees demonstrated fluid views towards SF, and suggestions were made that perceptions may be influenced by family history. Further research into the changing desirability of SF and behavioural impact of disclosure are needed, and the development and introduction of mechanisms to respond to changes in patient views should be considered.
| S-EPMC5945590 | biostudies-literature
Project description:Mammographic screening has improved breast cancer survival in the screened age group. This improved survival has not been seen in older women (>70 years) where screening uptake is low. This study explores the views, knowledge and attitudes of older women towards screening.Women (>70 years) were interviewed about breast screening. Interview findings informed the development of a questionnaire that was sent to 1000 women (>70 years) to quantify their views regarding screening.Twenty-six women were interviewed and a questionnaire was designed. The questionnaire response rate was 48.3% (479 out of 992). Over half (52.9%, 241 out of 456) of the respondents were unaware that they could request a mammography by voluntary self-referral and were unaware how to arrange this. Most (81.5%, 383 out of 470) had not attended breast screening since turning 70 years. Most (75.6%, 343 out of 454) felt screening was beneficial and would attend if invited. Most (90.1%, 412 out of 457) felt screening should be offered to all women regardless of age or health.There is a lack of knowledge about screening in older women. The majority felt that invitation to screening should be extended to the older age group regardless of age or health. The current under-utilised system of voluntary self-referral is not supported by older women.
| S-EPMC2869163 | biostudies-other
Project description:Background Informed consent is often cited as the “cornerstone” of research ethics. Its intent is that participants enter research voluntarily, with an understanding of what their participation entails. Despite agreement on the necessity to obtain informed consent in research, opinions vary on the threshold of disclosure necessary and the best method to obtain consent. We aimed to investigate Australian researchers’ views on, and their experiences with, obtaining informed consent. Methods Semi-structured interviews were conducted with 23 researchers from NSW institutions, working in various fields of research. Interviews were analysed and coded to identify themes. Results Researchers reported that consent involved information disclosure, understanding and a voluntary decision. They emphasised the variability of consent interactions, which were dependent on potential participants’ abilities and interests, study complexity and context. All researchers reported providing written information to potential participants, yet questioned the readability and utility of this information. The majority reported using signed consent forms to ‘operationalise’ consent and reported little awareness of, and lack of support in implementing more dynamic informed consent procedures, such as verbal informed consent, that was fit for the purposes of their studies. Views on Human Research Ethics Committees (HRECs) varied. Some reported inconsistent, arduous inputs on the information form and consent process. Others expressed reliance on HRECs for guidance, viewing them as institutional safeguards. Conclusions This study highlights the importance of transparent relationships, both between researchers and participants, and between researchers and HRECs. Where the relationship with study participants was reported as more robust, researchers felt that they were better able to ensure participants made better, more informed decisions. Where the relationship with HRECs was reported as more robust, researchers were more likely to view them as institutional safeguards, rather than as bureaucratic hindrances. Conscientious and mindful researchers are paramount to ensuring the procedure accommodates individual requirements. This study advocates that when designing ethical informed consent practices, researchers should be integrated as autonomous players with a positive input on the process, rather than, in the worst case, predatory recruiters to be curtailed by information forms and oversight.
| S-EPMC7531157 | biostudies-literature
Project description:BackgroundDiscrepancies between pre-specified and reported outcomes are an important and prevalent source of bias in clinical trials. COMPare (Centre for Evidence-Based Medicine Outcome Monitoring Project) monitored all trials in five leading journals for correct outcome reporting, submitted correction letters on all misreported trials in real time, and then monitored responses from editors and trialists. From the trialists' responses, we aimed to answer two related questions. First, what can trialists' responses to corrections on their own misreported trials tell us about trialists' knowledge of correct outcome reporting? Second, what can a cohort of responses to a standardised correction letter tell us about how researchers respond to systematic critical post-publication peer review?MethodsAll correspondence from trialists, published by journals in response to a correction letter from COMPare, was filed and indexed. We analysed the letters qualitatively and identified key themes in researchers' errors about correct outcome reporting, and approaches taken by researchers when their work was criticised.ResultsTrialists frequently expressed views that contradicted the CONSORT (Consolidated Standards of Reporting Trials) guidelines or made inaccurate statements about correct outcome reporting. Common themes were: stating that pre-specification after trial commencement is acceptable; incorrect statements about registries; incorrect statements around the handling of multiple time points; and failure to recognise the need to report changes to pre-specified outcomes in the trial report. We identified additional themes in the approaches taken by researchers when responding to critical correspondence, including the following: ad hominem criticism; arguing that trialists should be trusted, rather than follow guidelines for trial reporting; appealing to the existence of a novel category of outcomes whose results need not necessarily be reported; incorrect statements by researchers about their own paper; and statements undermining transparency infrastructure, such as trial registers.ConclusionsResearchers commonly make incorrect statements about correct trial reporting. There are recurring themes in researchers' responses when their work is criticised, some of which fall short of the scientific ideal. Research on methodological shortcomings is now common, typically in the form of retrospective cohort studies describing the overall prevalence of a problem. We argue that prospective cohort studies which additionally issue correction letters in real time on each individual flawed study-and then follow-up responses from trialists and journals-are more impactful, more informative for those consuming the studies critiqued, more informative on the causes of shortcomings in research, and a better use of research resources.
| S-EPMC6374909 | biostudies-literature
Project description:IntroductionGeneral practice data, particularly when combined with hospital and other health service data through data linkage, are increasingly being used for quality assurance, evaluation, health service planning and research. In this study, we explored community views on sharing general practice data for secondary purposes, including research, to establish what concerns and conditions need to be addressed in the process of developing a social licence to support such use.MethodsWe used a mixed-methods approach with focus groups (November-December 2021), followed by a cross-sectional survey (March-April 2022).ResultsThe participants in this study strongly supported sharing general practice data with the clinicians responsible for their care, and where there were direct benefits for individual patients. Over 90% of survey participants (N = 2604) were willing to share their general practice information to directly support their health care, that is, for the primary purpose of collection. There was less support for sharing data for secondary purposes such as research and health service planning (36% and 45% respectively in broad agreement) or for linking general practice data to data in the education, social services and criminal justice systems (30%-36%). A substantial minority of participants were unsure or could not see how benefits would arise from sharing data for secondary purposes. Participants were concerned about the potential for privacy breaches, discrimination and data misuse and they wanted greater transparency and an opportunity to consent to data release.ConclusionThe findings of this study suggest that the public may be more concerned about sharing general practice data for secondary purposes than they are about sharing data collected in other settings. Sharing general practice data more broadly will require careful attention to patient and public concerns, including focusing on the factors that will sustain trust and legitimacy in general practice and GPs.Patient and public contributionMembers of the public were participants in the study. Data produced from their participation generated study findings.Clinical trial registrationNot applicable.
| S-EPMC10869884 | biostudies-literature
Project description:ObjectiveTo explore the views and attitudes of Indians living in England on blood donation.BackgroundIn light of the predicted shortages in blood supply, it is vital to consider ways in which to maximise donation rates. These include addressing the issue of lower donation rates among ethnic minorities, including Indians. However research specifically among minority ethnicities in UK is sparse.SettingGeneral practice in North London.ParticipantsA convenience sample of 12 non-donor Indians living in England.MethodsThis is a qualitative investigation involving semistructured interviews. Themes derived were analysed using thematic framework analysis.ResultsFive key themes emerged from the data, and these concerned participants' perspectives regarding attitudes towards blood, blood donation as a 'good thing', donation disincentives, the recipient matters and the donor matters.ConclusionA variety of attitudes were presented, but were generally positive, and blood was conceptualised in a manner previously found to be consistent with donation. However, lack of awareness and accessibility were prominent barriers, indicating the need for improvement in these capacities. In contrast to this, blood was also greatly associated with family and acted as a symbol of kinship: this 'emotional charge' often acted to dissuade participants from separating with their blood through donation. Possibly due to this, there was also a strong preference for donated blood to be distributed within the family, as opposed to strangers. This presents a potential barrier to blood donation for some Indians within the current system in which donations are given to unknown recipients.
| S-EPMC5665255 | biostudies-literature
Project description:Methods for data analysis in the biomedical, life, and social (BLS) sciences are developing at a rapid pace. At the same time, there is increasing concern that education in quantitative methods is failing to adequately prepare students for contemporary research. These trends have led to calls for educational reform to undergraduate and graduate quantitative research method curricula. We argue that such reform should be based on data-driven insights into within- and cross-disciplinary use of analytic methods. Our survey of peer-reviewed literature analyzed approximately 1.3 million openly available research articles to monitor the cross-disciplinary mentions of analytic methods in the past decade. We applied data-driven text mining analyses to the "Methods" and "Results" sections of a large subset of this corpus to identify trends in analytic method mentions shared across disciplines, as well as those unique to each discipline. We found that the t test, analysis of variance (ANOVA), linear regression, chi-squared test, and other classical statistical methods have been and remain the most mentioned analytic methods in biomedical, life science, and social science research articles. However, mentions of these methods have declined as a percentage of the published literature between 2009 and 2020. On the other hand, multivariate statistical and machine learning approaches, such as artificial neural networks (ANNs), have seen a significant increase in the total share of scientific publications. We also found unique groupings of analytic methods associated with each BLS science discipline, such as the use of structural equation modeling (SEM) in psychology, survival models in oncology, and manifold learning in ecology. We discuss the implications of these findings for education in statistics and research methods, as well as within- and cross-disciplinary collaboration.
| S-EPMC8321514 | biostudies-literature
Project description:Background:There is increasing evidence that research misbehaviour is common, especially the minor forms. Previous studies on research misbehaviour primarily focused on biomedical and social sciences, and evidence from natural sciences and humanities is scarce. We investigated what academic researchers in Amsterdam perceived to be detrimental research misbehaviours in their respective disciplinary fields. Methods:We used an explanatory sequential mixed methods design. First, survey participants from four disciplinary fields rated perceived frequency and impact of research misbehaviours from a list of 60. We then combined these into a top five ranking of most detrimental research misbehaviours at the aggregate level, stratified by disciplinary field. Second, in focus group interviews, participants from each academic rank and disciplinary field were asked to reflect on the most relevant research misbehaviours for their disciplinary field. We used participative ranking methodology inducing participants to obtain consensus on which research misbehaviours are most detrimental. Results:In total, 1080 researchers completed the survey (response rate: 15%) and 61 participated in the focus groups (3 three to 8 eight researchers per group). Insufficient supervision consistently ranked highest in the survey regardless of disciplinary field and the focus groups confirmed this. Important themes in the focus groups were insufficient supervision, sloppy science, and sloppy peer review. Biomedical researchers and social science researchers were primarily concerned with sloppy science and insufficient supervision. Natural sciences and humanities researchers discussed sloppy reviewing and theft of ideas by reviewers, a form of plagiarism. Focus group participants further provided examples of particular research misbehaviours they were confronted with and how these impacted their work as a researcher. Conclusion:We found insufficient supervision and various forms of sloppy science to score highly on aggregate detrimental impact throughout all disciplinary fields. Researchers from the natural sciences and humanities also perceived nepotism to be of major impact on the aggregate level. The natural sciences regarded fabrication of data of major impact as well. The focus group interviews helped to understand how researchers interpreted 'insufficient supervision'. Besides, the focus group participants added insight into sloppy science in practice. Researchers from the natural sciences and humanities added new research misbehaviours concerning their disciplinary fields to the list, such as the stealing of ideas before publication. This improves our understanding of research misbehaviour beyond the social and biomedical fields.
| S-EPMC6886174 | biostudies-literature
Project description:BACKGROUND:Stress urinary incontinence (SUI) is the most prevalent subtype of urinary incontinence and is a bothering condition in women. Only a minority of those with SUI consult a general practitioner (GP). EHealth with pelvic floor muscle training (PFMT) is effective in reducing incontinence symptoms and might increase access to care. The role of the GP regarding such an eHealth intervention is unknown. The aim of the study is to gain insight into the attitudes towards a PFMT internet-based, eHealth, intervention for SUI. METHODS:A qualitative study was conducted. Data were collected through semi-structured interviews among purposively sampled GPs. Audio records were fully transcribed, and analysed thematically. RESULTS:Thirteen GPs were interviewed, nine females and four males. Three themes emerged: appraisal of eHealth as a welcome new tool, mixed feelings about a supportive role, and eHealth is no cure-all. GPs welcomed eHealth for SUI as matching their preferences for PFMT and having advantages for patients. With eHealth as stand-alone therapy GPs were concerned about the lack of feedback, and the loss of motivation to adhere to the intervention. Therefore, GPs considered personal support important. The GP's decision to recommend eHealth was strongly influenced by a woman's motivation and her age. GPs' treatment preferences for elderly are different from those for young women with SUI; both PFMT and eHealth are perceived less suitable for older women. CONCLUSION:EHealth with PFMT fits into the GPs' routine practice of SUI and adds value to it. Although there is evidence that eHealth as a stand-alone intervention is effective, GPs consider personal support important to supplement the perceived shortcomings. Probably GPs are not aware of, or convinced of the existing evidence. Training should address this issue and should also focus on common misunderstandings about regular care for women with SUI, such as the idea that PFMT is not suitable for the elderly. Improving GPs' knowledge that eHealth can be a stand-alone therapy for SUI facilitates the implementation in daily care.
| S-EPMC6347743 | biostudies-literature
Project description:ObjectivesTo explore patient views and perspectives of current management of chronic rhinosinusitis (CRS) in primary and secondary care.DesignSemistructured qualitative telephone interviews as part of the MACRO programme (Defining best Management for Adults with Chronic RhinOsinusitis).SettingPrimary care and secondary care ear, nose and throat outpatient clinics in the UK.ParticipantsTwenty-five patients consented to in-depth telephone interviews. Transcribed recordings were managed using NVivo software and analysed using inductive thematic analysis.ResultsCRS has a significant impact on patients' quality of life, affecting their ability to work effectively, their social interactions and daily living. Patients seek help when symptoms become unmanageable, but can become frustrated with the primary care system with difficulties obtaining an appointment, and lack of continuity of care. Patients perceive that general practitioners can be dismissive of CRS symptoms, and patients often prioritise other concerns when they consult. Health system barriers and poor communication can result in delays in accessing appropriate treatment and referral. Adherence to intranasal steroids is a problem and patients are uncertain about correct technique. Nasal irrigation can be time-consuming and difficult for patients to use. Secondary care consultations can appear rushed, and patients would like specialists to take a more 'holistic' approach to their management. Surgery is often considered a temporary solution, appropriate when medical options have been explored.ConclusionsPatients are frustrated with the management of their CRS, and poor communication can result in delays in receiving appropriate treatment and timely referral. Patients seek better understanding of their condition and guidance to support treatments decisions in light of uncertainties around the different medical and surgical options. Better coordinated care between general practice and specialist settings and consistency of advice has the potential to increase patient satisfaction and improve outcomes.
| S-EPMC6501991 | biostudies-literature