Dataset Information

Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.

ABSTRACT: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients.We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015). We explore two aspects of consent: first, how healthcare professionals consider the act of 'consenting' patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process.Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients' understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients' decision-making. Rather, decision-making is socially contextualised - also based on factors outside of information provision.A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed.

SUBMITTER: Samuel GN

PROVIDER: S-EPMC5549302 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

ACCESS DATA

Similar Datasets

Project description:INTRODUCTION:Diabetes self-management education is a key aspect in the long-term management of type 2 diabetes. The patient and healthcare professional (HCP) perspective on the use of technology-assisted DSME has yet to be studied. Hence, the objective of this study was to better understand the factors that facilitate or hinder the adoptions of such education by adults with type 2 diabetes and their HCPs. METHODS:We systematically searched five databases (Medline, Embase, CINAHL, Web of Science Core Collection, and PsycINFO) until August 2019. The search included qualitative and mixed-method studies that reported the views of patients and HCPs regarding features, uses, and implementations of technology-assisted DSME. Data were synthesized through an inductive thematic analysis. RESULTS:A total of 13 articles were included, involving 242 patients, ranging from 18 to 81 years and included web-based, mobile application, digital versatile disc (DVD), virtual reality or telehealth interventions. Patients and HCPs had mixed views towards features of the technology-assisted interventions, with patients' personal qualities and HCPs' concerns affecting uses of the interventions. Patients generally preferred technologies that were easy to access, use, and apply and that had reliable information. Patients' ambitions motivated them, and personal attributes such as poor competence with technology, poor literacy, and language barriers acted as barriers. Patients especially liked the peer support that they received but did not like it when there was no regulation of advice on these platforms. HCPs believed that while the interventions were useful to patients, they faced difficulties with integration into their clinical workflows. CONCLUSION:This review explored the features of technology-assisted diabetes self-management education interventions that enhanced positive patient engagements and the negative aspects of both the platforms and the target groups. Technical support and training will be effective in managing these concerns and ensuring meaningful use of these platforms.

Project description:Cognitive enhancers (CEs) encompass a wide range of drugs, including prescription medications for attention deficit disorders and pharmacological compounds for cognitive enhancement. It is well-documented that the students are the leading cohort of CEs users. Exploring how healthcare professionals perceive the use of CEs for academic accomplishments is significant to understand their encouragement of CE use. Hence, the purpose of the current study was to look at healthcare professionals' attitudes and perceived understanding about the usage of CEs in academic contexts. The study was a quantitative cross-sectional research design conducted in different healthcare and academic settings of Karachi. The respondents were approached either through social media platforms or the official email addresses of their working organizations. Data were collected through a web link of an online questionnaire that included four sections; inquiring about the respondents' demographics characteristics, their knowledge about CEs, their attitudes towards the use and impact of CEs, and their inclination to use a hypothetical prescription-only CE. The response rate of the study was 73.3%. The majority of the respondents negated to permit university students to using CEs for cognitive boost (n = 360, 67.1%), to concentrate (n = 406, 75.7%), to increase vigilance (n = 394, 73.5%) or to mitigate the effects of other medicines (n = 312, 58.2%). The pharmacists were more likely to refute that using CEs by the students is safe (pharmacists 10.8% vs. physicians 8.3%, p=<0.001), beneficial (pharmacists 12.7% vs. physicians 5.3%, p=<0.001), or necessary (pharmacists 17.6% vs. physicians 12.8%, p=<0.001). The major reasons for not encouraging the use of CEs were fear of misuse (n = 510, 95.1%), safety concerns (n = 495, 92.3%), and their consideration for CE as unnecessary medical intervention (n = 441, 82.2%). The findings indicated that overall, respondents have a clear consensus of not letting university students use CEs for cognitive improvement or any other purpose implying that cognitive enhancement is not yet a common or approved medical practice by the healthcare professionals in Pakistan.

Project description:BACKGROUND:To optimize patient education, it is important to understand what healthcare professionals perceive to be ideal oncology medication education for patients to receive, and what they feel is their role and the role of others in its delivery. Education provided to patients is an important component of chemotherapy as it has been shown to benefit and positively impact patients who receive it. Educational interventions are often provided by multidisciplinary teams with the goal of improving patient care. However, few studies have explored the roles of healthcare professionals in delivering oncology medication education. OBJECTIVE:To explore the perspectives of healthcare professionals working in medical, gynaecological or hematological oncology to identify what they perceive to be optimal oncology medication education for patients. METHODS:Healthcare professionals (physicians, nurses and pharmacists) working in medical, gynaecological or hematological oncology at the Nova Scotia Health Authority, Central Zone were invited to participate in one-on-one, semi-structured interviews which were audio-recorded, transcribed and analyzed using thematic analysis. FINDINGS:Fifteen interviews, including five physicians, four nurses and six pharmacists were conducted from February to April 2018. Four major themes were identified: Delivery of oncology medication education, Facilitating the patient learning process, Multidisciplinary Approach and Understanding barriers to the healthcare professional in providing education. CONCLUSION:The identified themes uncovered novel ideas about how healthcare professionals felt oncology medication education could ideally be delivered to patients, and supported findings in the literature. Although participants discussed barriers to their ability to deliver optimal education, they also identified ways in which they can facilitate patient learning, for example, through the reinforcement of education. Participants recognized the importance of increasing collaboration and communication with the multidisciplinary team. This research will inform the design of any new models for oncology medication education at the Nova Scotia Health Authority, Central Zone and potentially other sites.

Dataset Information

Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets