Developing Valid and Feasible Measures of Sexual Consent for Experience Sampling Methodology.
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ABSTRACT:
SUBMITTER: Willis M
PROVIDER: S-EPMC9239692 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:This work describes the usability studies conducted in the development of an experience-sampling methodology (ESM) system running in a mobile device. The goal of the system is to improve the accuracy and ecology in gathering daily self-report data in individuals suffering a chronic pain condition, fibromyalgia. The usability studies showed that the developed software to conduct ESM with mobile devices (smartphones, cell phones) can be successfully used by individuals with fibromyalgia of different ages and with low level of expertise in the use of information and communication technologies. 100% of users completed the tasks successfully, although some have completely illiterate. Also there seems to be a clear difference in the way of interaction obtained in the two studies carried out.
| S-EPMC3523534 | biostudies-literature
Project description:OBJECTIVES:To develop outcome measures to assess practical management of primary surgical wounds and patient experience. DESIGN:Mixed methods, including qualitative interviews and data extraction from published randomised controlled trials (RCTs). SETTING:Two university-teaching NHS hospitals and three district NHS hospitals in the South West and Midlands regions of England. PARTICIPANTS:Sixty-four patients and 15 healthcare professionals from abdominal general surgical specialities and obstetrics (caesarean section). METHODS:Measures were developed according to standard guidelines to identify issues relevant to patients' experiences of surgical wounds and dressings, including analysis of existing RCT outcomes and semi-structured interviews. These were written into provisional questionnaire items for a single outcome measure. Cognitive interviews with patients and healthcare professionals assessed face validity, acceptability and relevance. Findings from interviews were regularly shared with the study team who suggested amendments to modify and reword items to improve understanding before further iterative testing with patients and healthcare professionals. RESULTS:Analyses of existing RCT outcomes and interviews produced a total of 69 issues. Pretesting and iterative revision established the need for two separate measures. One measure addresses healthcare professionals' experience of wound management in two key areas: exudate and its impact, and allergic reactions to the dressing. The other measure addresses patients' experience of wounds in seven key areas: wound comfort, dressing removal, dressings to protect the wound, impact on daily activities, ease of movement, anxiety about the wound and satisfaction with dressing. Each measure took less than five?min to complete and both were understood and acceptable to patients and healthcare professionals. CONCLUSION:This in-depth study has developed two measures to assess practical management of primary surgical wounds and patient experience. Further work to test their validity, reliability and application to other settings is now required. TRIAL REGISTRATION NUMBER:HTA - 12/200/04; Pre-results.
| S-EPMC5719294 | biostudies-literature
Project description:ObjectiveTo explore the practices of obstetrician-gynecologists (ob-gyns) in the United States surrounding postpartum sterilization when the Medicaid consent form was not valid.MethodsUsing the American College of Obstetricians and Gynecologists' online directory, we conducted a qualitative study where we recruited ob-gyns practicing in 10 geographically diverse U.S. states for a qualitative study using semi-structured interviews conducted by telephone. We analyzed interview transcripts using the constant comparative method and principles of grounded theory.ResultsThirty ob-gyns (63% women, 77% nonsubspecialized, and 53% academic setting) were interviewed. Although most physicians stated that they did not perform sterilizations without a valid Medicaid sterilization form, others noted that they sometimes did due to a sense of ethical obligation toward their patient's health, being in a role with more authority or seniority, interpreting the emergency justification section of the form more broadly, or backdating the form. The physicians who said that they never went ahead without a signed form tended to work at large institutions and were concerned with losing funding and engaging in potentially illegal or fraudulent behavior.ConclusionPhysicians' varied behaviors related to providing postpartum sterilization without a valid Medicaid consent form demonstrate that the policy is in need of revision. Unclear terminology and ramifications of the Medicaid sterilization policy need to be addressed to ensure equitable care.
| S-EPMC8288449 | biostudies-literature
Project description:BackgroundA temporal network of generalized anxiety disorder (GAD) symptoms could provide valuable understanding of the occurrence and maintenance of GAD. We aim to obtain an exploratory conceptualization of temporal GAD network and identify the central symptom.MethodsA sample of participants (n = 115) with elevated GAD-7 scores (Generalized Anxiety Disorder 7-Item Questionnaire [GAD-7] ≥ 10) participated in an online daily diary study in which they reported their GAD symptoms based on DSM-5 diagnostic criteria (eight symptoms in total) for 50 consecutive days. We used a multilevel VAR model to obtain the temporal network.ResultsIn temporal network, a lot of lagged relationships exist among GAD symptoms and these lagged relationships are all positive. All symptoms have autocorrelations and there are also some interesting feedback loops in temporal network. Sleep disturbance has the highest Out-strength centrality.ConclusionsThis study indicates how GAD symptoms interact with each other and strengthen themselves over time, and particularly highlights the relationships between sleep disturbance and other GAD symptoms. Sleep disturbance may play an important role in the dynamic development and maintenance process of GAD. The present study may develop the knowledge of the theoretical model, diagnosis, prevention and intervention of GAD from a temporal symptoms network perspective.
| S-EPMC10981297 | biostudies-literature
Project description:BackgroundConsent forms have lengthened over time and become harder for participants to understand. We sought to demonstrate the feasibility of creating a simplified consent form for biobanking that comprises the minimum information necessary to meet ethical and regulatory requirements. We then gathered preliminary data concerning its content from hypothetical biobank participants.Methodology/principal findingsWe followed basic principles of plain-language writing and incorporated into a 2-page form (not including the signature page) those elements of information required by federal regulations and recommended by best practice guidelines for biobanking. We then recruited diabetes patients from community-based practices and randomized half (n = 56) to read the 2-page form, first on paper and then a second time on a tablet computer. Participants were encouraged to use "More information" buttons on the electronic version whenever they had questions or desired further information. These buttons led to a series of "Frequently Asked Questions" (FAQs) that contained additional detailed information. Participants were asked to identify specific sentences in the FAQs they thought would be important if they were considering taking part in a biorepository. On average, participants identified 7 FAQ sentences as important (mean 6.6, SD 14.7, range: 0-71). No one sentence was highlighted by a majority of participants; further, 34 (60.7%) participants did not highlight any FAQ sentences.ConclusionsOur preliminary findings suggest that our 2-page form contains the information that most prospective participants identify as important. Combining simplified forms with supplemental material for those participants who desire more information could help minimize consent form length and complexity, allowing the most substantively material information to be better highlighted and enabling potential participants to read the form and ask questions more effectively.
| S-EPMC2951917 | biostudies-literature
Project description:Research agrees that self-reported measures of time spent with social media (TSM) show poor convergent validity, because they correlate modestly with equivalent objective digital trace measures. This experience sampling study among 159 adolescents (12,617 self-reports) extends this work by examining the comparative predictive validity of self-reported and digital trace measures of TSM, that is, the extent to which self-reported and digital trace measures of TSM correspond in their effects on self-esteem, well-being, and friendship closeness. Using an N = 1 method of analysis, we investigated the correspondence on a between-person, within-person, and person-specific level. Although our results confirmed the poor convergent validity of self-reported TSM reported earlier, we found that self-reports of TSM had comparable predictive validity to digital trace measures on all three levels. Because comparative predictive validity of self-reported TSM is crucial for investigating social media effects, our results have important implications for future research using self-reported TSM.
| S-EPMC9084269 | biostudies-literature
Project description:ObjectivesThere is a strong association between stress and psychotic symptoms, and this study examined the bidirectional nature of this relationship in parents with psychosis, with negative affect as a mediator and a range of other psychosocial factors included as covariates. It also examined whether stress from parenting had a larger impact on psychosis than non-parenting stress.DesignThe study used a within-participants repeated measures design, using experience sampling methodology (ESM). ESM is a self-report surveying technique completed over an intensive longitudinal period. Participants completed six surveys a day, for 10 days.MethodsThirty-five participants with psychosis who were a parent to a child between the ages of 2 and 16 took part. Study phones alerted participants to complete surveys by beeping at semi-random intervals over 10 days. Multi-level modelling was used with surveys at Level-1 and participants at Level-2. Predictor variables were time-lagged in order to infer directionality.ResultsParenting stress was found to predict psychotic symptoms, and this relationship was mediated by negative affect. The reverse direction was also confirmed. Few of the additional psychosocial factors were found to have a significant impact on the models' estimations. Parenting stress was not found to have a larger impact on psychosis than other sources of stress.ConclusionsThis study provides further evidence of the bidirectional relationship between stress and psychosis in the context of parenting. Further research should explore if parenting stress plays a unique role in predicting psychotic symptoms by comparing parents and non-parents with psychosis.
| S-EPMC9804428 | biostudies-literature
Project description:To investigate the impact of sampling methodology on gene expression data from primary estrogen receptor positive (ER+) breast cancer biopsies. Analysis of global gene-expression measured in core-cut biopsies at baseline and surgery from patients randomised to receive either 2-week’s presurgical aromatase inhibitor (AI, n=157) or no presurgical treatment (n=56) revealed genes most markedly altered in the AI group (e.g. FOS, DUSP1, RGS1, FOSB) were equally altered in the no-treatment group; some widely investigated genes that were apparently unaffected in the AI group (e.g. MYC) were counter-altered in the Control group masking actual AI-dependent changes. In the absence of a Control group these artefactual changes would likely lead to the most affected genes being the erroneous focus of research. The findings are likely relevant to all archival collections of ER+ breast cancer.
2018-10-22 | GSE105777 | GEO
Project description:The rapid emergence of large-scale genetic databases raises issues at the nexus of medical law and ethics, as well as the need, at both national and international levels, for an appropriate and effective framework for their governance. This is even more so for retrospective access to data for secondary uses, wherein the original consent did not foresee such use. The first part of this paper provides a brief historical overview of the ethical and legal frameworks governing consent issues in biobanking generally, before turning to the secondary use of retrospective data in epidemiological biobanks. Such use raises particularly complex issues when (1) the original consent provided is restricted; (2) the minor research subject reaches legal age; (3) the research subject dies; or (4) samples and data were obtained during medical care. Our analysis demonstrates the inconclusive, and even contradictory, nature of guidelines and confirms the current lack of compatible regulations. The second part of this paper uses the European Network for Genetic and Genomic Epidemiology (ENGAGE Consortium) as a case study to illustrate the challenges of research using previously collected data sets in Europe. Our study of 52 ENGAGE consent forms and information documents shows that a broad range of mechanisms were developed to enable secondary use of the data that are part of the ENGAGE Consortium.
| S-EPMC2987368 | biostudies-other
Project description:Psychology related to areas such as gender, language, education and violence has provided scientific knowledge that contributes to reducing coercive social relationships, and to expanding freedom in sexual-affective relationships. Nonetheless, today there are new challenges that require additional developments. In the area of consent, professionals from different fields, such as law, gender, and education, are in need of evidence differentiating human communication that produces consent, and those conditions that coerce. Up to now, consent has been focused on verbal language, for example, "no means no," or "anything less than yes is no." Despite the fact that focusing consent on verbal language is a very important part of the problem, it does not solve most of the issues currently raised, like the famous case of "La Manada" in Spain. This article presents the most recent results of a new line of research, which places the problem and the solution in communicative acts, not only in speech acts. Even though there might be a "yes" in a sexual-affective relationship, there might not be consent, and it is indeed a coercive relationship if that "yes" has been given in a relationship determined by institutional power or by interactive power. Institutional power may occur if whoever made the proposal for the relationship is a person in charge of the process of selecting personnel in a company, and one of the candidates is the person who receives the proposal. Interactive power may occur if whoever makes the proposal is situated in an equal or inferior position in the company to the person receiving it, but the former threatens sextortion the latter. The potential social impact of this research has been already shown in the cases analyzed for this study.
| S-EPMC7042399 | biostudies-literature