المؤلفون: Kirsteen Campbell, Rebecca Whitehorn, Sarah Chave, Michael Gregg, Mhairi Docherty, Rosie Hill, Emma Turner, Katharine Evans, Jacqui Oakley, Robin Flaig, Andy Boyd

المصدر: International Journal of Population Data Science, Vol 9, Iss 3 (2024)

مصطلحات موضوعية: public involvement, PPIE, longitudinal population study participants, longitudinal population study data, Common Law Duty of Confidentiality, Section 251 of the NHS Act 2016, Demography. Population. Vital events, HB848-3697

الوصف: Background UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment for the UK's longitudinal studies. The need for a clear way to communicate Longitudinal Population Study (LPS) participants’ rights was identified through public contributor consultations. UK LLC gathered public views to inform meaningful discussion with NHS England, the National Data Guardian’s Office, and the Health Research Authority to develop a new framework for agreeing consistency in assessment of the legal basis for linking participant self-reported data to participants' health records. The consultation flagged that the legislation around LPS data is complex, confusing, and often inaccessible. This means that it may prove difficult for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are. Introduction The legal basis for using LPS data is complex. Of particular importance are the UK GDPR (General Data Protection Regulations), Common Law Duty of Confidentiality, Digital Economy Act (DEA) 2017 and Section 251 of the NHS Act 2016. Our vision was to produce transparency materials to help LPS participants understand LPS data and the law. Methods We surveyed public contributors from UK LLC, Health Data Research UK and DATAMIND to establish current understanding. We worked in partnership with UK LLC’s Public Advisory Group (PAG) and external organisations to produce a series of infographics (over time also available in audio, BSL and additional languages) to reach as wide an audience as possible. We collaborated with DATAMIND throughout the project sharing insights and ideas. Results A total of 56 people participated in the survey, most of whom lived in England: 30% were LPS participants; 55% were aged 55 and over; and 18% identified as belonging to an ethnic minority group. Survey results showed that the levels of awareness of the laws/legal principles relating to the use of LPS data is generally low. The DEA was least well-known, with 11% of people aware of this legislation. The most well-known among the infographic topics was GDPR, with 88% awareness. We co-developed key messages for LPS participants on what they should be aware of as individuals, including what they should expect from their LPS. This was not a straightforward process due to the exemptions and conditions under each law/legal principle. This led to focus on highlighting the practical implications for participants rather than explaining the laws/legal principles. Across the series, participants are directed to official organisations for further information. Conclusions This series of transparency materials provides a more accessible and easy-to-understand way for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are.

وصف الملف: electronic resource

Relation: https://ijpds.org/article/view/2457; https://doaj.org/toc/2399-4908

URL الوصول: https://doaj.org/article/38804a0ff8704cf49405ee19bbf06ac0

المؤلفون: Joyce K. Anastasi, Bernadette Capili, Margaret Norton, Donald J. McMahon, Karen Marder

المصدر: Frontiers in Pain Research, Vol 4 (2024)

مصطلحات موضوعية: clinical trials, recruitment, retention, study participants, chronic pain, chronic conditions, Neurology. Diseases of the nervous system, RC346-429

الوصف: This paper aims to present and discuss the issues, challenges, and strategies related to recruitment and retention in clinical trials involving participants with chronic pain. The randomized controlled clinical trial (RCT) is widely regarded as the gold standard for evaluating clinical interventions. However, it is crucial to acknowledge and address the challenges associated with recruiting and retaining participants. To prioritize the experience of the study population, targeted outreach strategies and a patient-centric approach are necessary. Researchers should consider incorporating recruitment and retention strategies during the study design phase. Implementing multi-pronged recruitment methods, leveraging relationships with community providers, and involving representatives of the patient population are helpful approaches. Effective communication and maintaining a professional environment are vital for optimizing engagement and supporting the successful execution of clinical trials involving participants with chronic pain.

وصف الملف: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fpain.2023.1330937/full; https://doaj.org/toc/2673-561X

URL الوصول: https://doaj.org/article/c3e8398b7bab45cbbb393ecf1cf17666

المؤلفون: Schnadower, David, Roskind, Cindy G, VanBuren, John M, Powell, Elizabeth C, Norris, Jesse G, Tarr, Phillip I, Sapien, Robert E, O'Connell, Karen J, Chun, Thomas H, Rogers, Alexander J, Bhatt, Seema R, Mahajan, Prashant, Gorelick, Marc H, Vance, Cheryl, Dean, J Michael, Freedman, Stephen B

المصدر: Journal of Pediatric Gastroenterology and Nutrition. 72(1)

مصطلحات موضوعية: Biomedical and Clinical Sciences, Clinical Sciences, Pediatric, Prevention, Digestive Diseases, Complementary and Integrative Health, Clinical Research, Clinical Trials and Supportive Activities, Evaluation of treatments and therapeutic interventions, 6.1 Pharmaceuticals, Acute Disease, Aged, Child, Double-Blind Method, Emergency Service, Hospital, Gastroenteritis, Humans, Infant, Probiotics, acute gastrointestinal infections, compliance, study participants, Pediatric Emergency Care Applied Research Network, Medical and Health Sciences, Gastroenterology & Hepatology, Clinical sciences, Nutrition and dietetics, Paediatrics

الوصف: AbstractNonadherence in clinical trials affects safety and efficacy determinations. Predictors of nonadherence in pediatric acute illness trials are unknown. We sought to examine predictors of nonadherence in a multicenter randomized trial of 971 children with acute gastroenteritis receiving a 5-day oral course of Lactobacillus rhamnosus GG or placebo. Adherence, defined as consuming all doses of the product, was reported by the parents and recorded during daily follow-up contacts. Of 943 patients with follow-up data, 766 (81.2%) were adherent. On multivariate analysis, older age (OR 1.19; 95% CI: 1.00-1.43), increased vomiting duration (OR 1.23; 95% CI: 1.05-1.45), higher dehydration score (OR 1.23, 95% CI: 1.07-1.42), and hospitalization following ED discharge (OR 4.16, 95% CI: 1.21--14.30) were factors associated with nonadherence; however, those with highest severity scores were more likely to adhere (OR 0.87, 95% CI: 0.80-0.95). These data may inform strategies and specific targets to maximize adherence in future pediatric trials.

وصف الملف: application/pdf

URL الوصول: https://escholarship.org/uc/item/1s78z615

المؤلفون: Joni Salminen, Soon-gyo Jung, Ahmed Kamel, Willemien Froneman, Bernard J. Jansen

المصدر: PeerJ Computer Science, Vol 8, p e1136 (2022)

مصطلحات موضوعية: User studies, Study participants, Effect of user studies, Value of user types, Sampling, External validity, Electronic computers. Computer science, QA75.5-76.95

الوصف: Background Constructing a sample of real users as participants in user studies is considered by most researchers to be vital for the validity, usefulness, and applicability of research findings. However, how often user studies reported in information technology academic literature sample real users or surrogate users is unknown. Therefore, it is uncertain whether or not the use of surrogate users in place of real users is a widespread problem within user study practice. Objective To determine how often user studies reported in peer-reviewed information technology literature sample real users or surrogate users as participants. Method We analyzed 725 user studies reported in 628 peer-reviewed articles published from 2013 through 2021 in 233 unique conference and journal outlets, retrieved from the ACM Digital Library, IEEE Xplore, and Web of Science archives. To study the sample selection choices, we categorized each study as generic (i.e., users are from the general population) or targeted (i.e., users are from a specific subpopulation), and the sampled study participants as real users (i.e., from the study population) or surrogate users (i.e., other than real users). Results Our analysis of all 725 user studies shows that roughly two-thirds (75.4%) sampled real users. However, of the targeted studies, only around half (58.4%) sampled real users. Of the targeted studies sampling surrogate users, the majority (69.7%) used students, around one-in-four (23.6%) sampled through crowdsourcing, and the remaining 6.7% of studies used researchers or did not specify who the participants were. Conclusions Key findings are as follows: (a) the state of sampling real users in information technology research has substantial room for improvement for targeted studies; (b) researchers often do not explicitly characterize their study participants in adequate detail, which is probably the most disconcerting finding; and (c) suggestions are provided for recruiting real users, which may be challenging for researchers. Implications The results imply a need for standard guidelines for reporting the types of users sampled for a user study. We provide a template for reporting user study sampling with examples.

وصف الملف: electronic resource

Relation: https://peerj.com/articles/cs-1136.pdf; https://peerj.com/articles/cs-1136/; https://doaj.org/toc/2376-5992

URL الوصول: https://doaj.org/article/097154367f764652bd693cb6c1395ae4

المؤلفون: Chieko Kurihara, Francis P. Crawley, Varvara Baroutsou, Sander Becker, Brigitte Franke-Bray, Courtney A. Granville, Kotone Matsuyama, Shehla Naseem, Johanna Schenk, Sandor Kerpel-Fronius

المصدر: Frontiers in Medicine, Vol 9 (2022)

مصطلحات موضوعية: research ethics, human rights, international humanitarian law, protection of vulnerable study participants, research integrity, adaptive design, Medicine (General), R5-920

وصف الملف: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fmed.2022.966220/full; https://doaj.org/toc/2296-858X

URL الوصول: https://doaj.org/article/f02d21b57ebc43f89739cc404a9ef962

المؤلفون: Metz, Thaddeus, author

المصدر: A Relational Moral Theory : African Ethics in and beyond the Continent, 2021.

الإتاحة: https://doi.org/10.1093/oso/9780198748960.003.0010

المؤلفون: Manohar, Narendar^Aff2, MacMillan, Freya^Aff3, Steiner, Genevieve Z.^Aff4, Arora, Amit^{Aff2, Aff5, Aff6, Aff7}

المساهمون: Liamputtong, Pranee, editor^Aff1

المصدر: Handbook of Research Methods in Health Social Sciences. :71-98

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المؤلفون: Esping, Amber^Aff2

المساهمون: Esping, Amber^Aff1

المصدر: Epistemology, Ethics, and Meaning in Unusually Personal Scholarship. :143-161

المؤلفون: Koschmieder, Nikola, Wyss, Sabrina, Pfister, Andreas

المصدر: Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 22, 2

مصطلحات موضوعية: Sozialwissenschaften, Soziologie, Social sciences, sociology, anthropology, Rekrutierung von Interviewteilnehmenden, Sampling, Zugang, access, hard-to-reach, hard-to-reach groups, qualitative Sozialforschung, qualitative social research, recruitment of study participants, sampling, schwer erreichbar, socially disadvantaged families, sozial benachteiligte Familien, Erhebungstechniken und Analysetechniken der Sozialwissenschaften, Methods and Techniques of Data Collection and Data Analysis, Statistical Methods, Computer Methods

الوصف: Die Rekrutierung schwer erreichbarer Personengruppen in qualitativen Studien stellt eine Herausforderung dar und wird dennoch selten zum Gegenstand methodologischer Ausarbeitungen. In dem vorliegenden Artikel beschreiben wir anhand eines Forschungsprojektes die angewandten Rekrutierungsstrategien und reflektieren diese im Hinblick auf die Erreichung von sozioökonomisch benachteiligten Familien, indem die Hürden und Erfolgsfaktoren der Strategien herausgearbeitet werden. Dabei kann gezeigt werden, dass die Wahl der Rekrutierungsmethode Einfluss auf die Samplezusammensetzung nehmen kann, was die Notwendigkeit regelmäßiger Reflexionsschleifen und die Anwendung verschiedener Strategien deutlich macht. Wichtig beim Zugang zu sozioökonomisch benachteiligten Gruppen ist außerdem die Berücksichtigung des Kontextes sowie der strukturellen Bedingungen der Zielgruppe. Bei der Rekrutierung von Familien ist die Erarbeitung einer kindgerechten Ansprache relevant. Zentral ist es, das Kind über das Interviewsetting aufzuklären und dessen ausdrückliche Zustimmung einzuholen. Weiter kann gezeigt werden, dass der Zugang zu schwer erreichbaren Personengruppen hohe zeitliche und unter Umständen auch finanzielle Ressourcen fordert und aufseiten der Forschenden eine erhöhte Flexibilität notwendig wird.
Recruiting hard-to-reach groups in qualitative studies is challenging and yet rarely becomes the subject of methodological reflections. In this article, we describe the recruitment strategies of a research project and reflect on them in terms of reaching socioeconomically disadvantaged families by highlighting the barriers and success factors of the strategies. It can be shown that the choice of the recruitment strategy can influence the sample composition, highlighting the need for regular reflection loops and the use of diverse strategies. It is also important when accessing socioeconomically disadvantaged groups to consider the context as well as the structural conditions of the target group. When recruiting families, the development of a child-friendly approach is relevant. It is central to inform the child about the interview setting and to obtain his or her explicit consent. Furthermore, it can be shown that access to hard-to-reach groups requires significant investments in time and in some cases financial resources, and that increased flexibility is necessary on the part of the researchers.

URL الوصول: https://www.ssoar.info/ssoar/handle/document/74609