Patients, health information, and guidelines: A focus-group study.
Ontology highlight
ABSTRACT:
SUBMITTER: Liira H
PROVIDER: S-EPMC4750726 | biostudies-other | 2015
REPOSITORIES: biostudies-other
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Project description:BackgroundPatient-directed selection and sharing of health information "granules" is known as granular information sharing. In a previous study, patients with behavioral health conditions categorized their own health information into sensitive categories (eg, mental health) and chose the health professionals (eg, pharmacists) who should have access to those records. Little is known about behavioral health professionals' perspectives of patient-controlled granular information sharing (PC-GIS).ObjectiveThis study aimed to assess behavioral health professionals' (1) understanding of and opinions about PC-GIS; (2) accuracy in assessing redacted medical information; (3) reactions to patient rationale for health data categorization, assignment of sensitivity, and sharing choices; and (4) recommendations to improve PC-GIS.MethodsFour 2-hour focus groups and pre- and postsurveys were conducted at 2 facilities. During the focus groups, outcomes from a previous study on patients' choices for medical record sharing were discussed. Thematic analysis was applied to focus group transcripts to address study objectives.ResultsA total of 28 health professionals were recruited. Over half (14/25, 56%) were unaware or provided incorrect definitions of granular information sharing. After PC-GIS was explained, all professionals demonstrated understanding of the terminology and process. Most (26/32 codes, 81%) recognized that key medical data had been redacted from the study case. A majority (41/62 codes, 66%) found the patient rationale for categorization and data sharing choices to be unclear. Finally, education and other approaches to inform and engage patients in granular information sharing were recommended.ConclusionsThis study provides detailed insights from behavioral health professionals on granular information sharing. Outcomes will inform the development, deployment, and evaluation of an electronic consent tool for granular health data sharing.
| S-EPMC9069296 | biostudies-literature
Project description:BackgroundYounger generations actively use social media to access health information. However, research shows that they also avoid obtaining health information online at times when confronted with uncertainty.ObjectiveThis study aims to examine the phenomenon of health information avoidance among Generation Z, a representative cohort of active web users in this era.MethodsDrawing on the planned risk information avoidance model, we adopted a qualitative approach to explore the factors related to information avoidance within the context of health and risk communication. The researchers recruited 38 participants aged 16 to 25 years for the focus group discussion sessions.ResultsIn this study, we sought to perform a deductive qualitative analysis of the focus group interview content with open, focused, and theoretical coding. Our findings support several key components of the planned risk information avoidance model while highlighting the underlying influence of cognition on emotions. Specifically, socioculturally, group identity and social norms among peers lead some to avoid health information. Cognitively, mixed levels of risk perception, conflicting values, information overload, and low credibility of information sources elicited their information avoidance behaviors. Affectively, negative emotions such as anxiety, frustration, and the desire to stay positive contributed to avoidance.ConclusionsThis study has implications for understanding young users' information avoidance behaviors in both academia and practice.
| S-EPMC10960220 | biostudies-literature
Project description:BACKGROUND:Head and Neck cancer (HNC) is characterized by significant mortality and morbidity. Treatment is often invasive and interferes with vital functions, resulting in a delicate balance between survival benefit and deterioration in quality of life (QoL). Therefore, including prognostic information during patient counseling can be of great importance. The first aim of this study was to explore HNC patients' preferences for receiving prognostic information: both qualitative (general terms like "curable cancer"), and quantitative information (numbers, percentages). The second aim of this study was to explore patients' views on "OncologIQ", a prognostic model developed to estimate overall survival in newly diagnosed HNC patients. METHODS:We conducted a single center qualitative study by organizing five focus groups with HNC patients (n?=?21) and their caregivers (n?=?19), categorized in: 1) small laryngeal carcinomas treated with radiotherapy or laser, 2) extensive oral cavity procedures, 3) total laryngectomy, 4) chemoradiation, 5) other treatments. The patients' perspective was the main focus. The interview guide consisted of two main topics: life-expectancy and the prognostic model OncologIQ. All focus groups were recorded, transcribed and coded. Themes were derived using content analysis. RESULTS:While all patients considered it somewhat to very important to receive information about their life-expectancy, only some of them wanted to receive quantitative information. Disclosing qualitative prognostic information like "the cancer is curable" would give enough reassurance for most patients. Overall, patients thought life-expectancy should not be discussed shortly after cancer diagnosis disclosure, as a certain time is needed to process the first shock. They had a stronger preference for receiving prognostic information in case of a poor prognosis. Prognostic information should also include information on the expected QoL. The pie chart was the most preferred chart for discussing survival rates. CONCLUSIONS:The participants found it important to receive information on their life-expectancy. While most patients were enough reassured by qualitative prognostic information, some wanted to receive quantitative information like OncologIQs' estimates. A tailor-made approach is necessary to provide customized prognostic information. A clinical practice guideline was developed to support professionals in sharing prognostic information, aiming to improve shared decision making and patient-centered care.
| S-EPMC7203788 | biostudies-literature
Project description:Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies.To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals.Focus groups, transcribed and analysed thematically.Thirty-four participants from the public.Participants were provided with, and invited to discuss, a hypothetical scenario giving an individual's personalized genomic risk of melanoma displayed in several graphical formats.Participants preferred risk formats that were familiar and easy to understand, such as a 'double pie chart' and '100 person diagram' (pictograph). The 100 person diagram was considered persuasive because it humanized and personalized the risk information. People described the pie chart format as resembling bank data and food (such as cake and pizza). Participants thought that email, web-based platforms and postal mail were viable options for communicating genomic risk information. However, they felt that it was important that a health professional (either a genetic counsellor or 'informed' general practitioner) be available for discussion at the time of receiving the risk information, to minimize potential negative emotional responses and misunderstanding. Face-to-face or telephone delivery was preferred for delivery of high-risk results.These public preferences for communication strategies for genomic risk information will help to guide translation of genome-based knowledge into improved population health.
| S-EPMC5139046 | biostudies-literature
Project description:FUT2/FUT3 genes sequences and nasopharyngeal shotgun metagenomics from the Microbiota and Health Study
| PRJEB42539 | ENA
Project description:PurposeInvestigating transgender people's experiences sharing health information in clinical encounters may yield insights for family medicine clinicians.MethodsThis was a qualitative study using a community-based participatory research approach and interpretive description methodology. Seven qualitative focus groups were conducted with 30 transgender adults living in North America. We used purposive sampling to ensure diversity. The focus groups were transcribed verbatim, and 2 investigators independently reviewed and coded each transcript, then they mutually reviewed the transcripts, reconciled their coding, and summarized the codes into themes. Themes were reviewed with community members, participants, and uninvolved clinically oriented investigators for member checking and peer debriefing.ResultsFour themes were noted: (1) transgender people often perceive clinicians' questions as voyeuristic, stigmatizing, or self-protective; (2) patients describe being pathologized, denied or given substandard care, or harmed when clinicians learned they are transgender; (3) transgender people frequently choose between risking stigma when sharing information and risking ineffective clinical problem solving if clinicians do not have all the information about their medical histories; (4) improving the safety of transgender people is difficult in the context of contemporary medical systems.ConclusionsTransgender people often must choose between stigma and potentially suboptimal care. Improvements in medical culture, policies, procedures, and data collection tools are necessary to improve the quality and safety of clinical care for transgender people. Institutional and systems changes may be required to safely and effectively implement sexual orientation and gender identity (SOGI) data collection in clinical settings.
| S-EPMC10519763 | biostudies-literature
Project description:BackgroundWhen parents want to make health-related decisions for their child, they need to be able to handle health information from a potentially endless range of sources. Early childhood allergy prevention (ECAP) is a good example: recommendations have shifted from allergen avoidance to early introduction of allergenic foods. We investigated how parents of children under 3 years old access, appraise and apply health information about ECAP, and their respective needs and preferences.MethodsWe conducted 23 focus groups and 24 interviews with 114 parents of children with varied risk for allergies. The recruitment strategy and a topic guide were co-designed with the target group and professionals from public health, education, and medicine. Data were mostly collected via video calls, recorded and then transcribed verbatim. Content analysis according to Kuckartz was performed using MAXQDA and findings are presented as a descriptive overview.ResultsParents most frequently referred to family members, friends, and other parents as sources of ECAP information, as well as healthcare professionals (HCPs), particularly pediatricians. Parents said that they exchanged experiences and practices with their peers, while relying on HCPs for guidance on decision-making. When searching for information online, they infrequently recalled the sources used and were rarely aware of providers of "good" health information. While parents often reported trying to identify the authors of information to appraise its reliability, they said they did not undertake more comprehensive information quality checks. The choice and presentation of ECAP information was frequently criticized by all parent groups; in particular, parents of at-risk children or with a manifested allergy were often dissatisfied with HCP consultations, and hence did not straightforwardly apply advice. Though many trusted their HCPs, parents often reported taking preventive measures based on their own intuition.ConclusionOne suggestion to react upon the many criticisms expressed by parents regarding who and how provides ECAP information is to integrate central ECAP recommendations into regular child care counseling by HCPs-provided that feasible ways for doing so are identified. This would assist disease prevention, as parents without specific concerns are often unaware of the ECAP dimension of issues such as nutrition.
| S-EPMC10149846 | biostudies-literature
Project description:The digital era has seen rapid changes in how information is consumed. Traditional dissemination of scholarly work through biomedical journals may not be optimally tailored to the preferences of younger clinicians and researchers. We aimed to describe the perspectives of young clinicians and researchers in kidney disease on consuming scientific information. Three focus groups were conducted during the 2017 American Society of Nephrology Kidney Week with a total of 29 nephrologists and researchers (ages 40 years old and younger) purposively sampled through our networks and the American Society of Nephrology registration database. Data were analyzed thematically. Of the 72 participants invited, 29 participated from 28 centers across 13 countries. Five themes were identified: capturing and retaining attention (with subthemes of triggering interest, optimizing readability, and navigation to sustain motivation); having discernible relevance (resonating with clinical and research interests, supporting professional development, action-oriented and readily applicable, able to disseminate, contextualizing the study, and filtering out informational noise); immediacy and efficiency in processing information (requiring instantaneous and easy access, enabling rapid understanding, and facilitating comprehension of complex concepts); trusting legitimate and credible sources (authoritative indicator of importance and quality, reputable experts broadening perspective, certainty and confidence with collegial input, accurate framing and translation of the message, ascertaining methodologic detail and nuances, and integrating the patient perspective); and social dialoguing and debate. Immediate and digitally optimized access motivated young kidney professionals to consume scientific information. Mechanisms that enable them to distil relevant and new evidence, appraise and apply information to clinical practice and research, disseminate studies to colleagues, and engage in discussion and debate may enhance their comprehension, confidence, interpretation, and use of scientific literature.
| S-EPMC6218813 | biostudies-other
Project description:Despite national and local French information campaigns, when acute stroke occurs, waiting times before calling mobile emergency medical services (EMS) to receive appropriate treatment (i.e. thrombolysis) and decrease the risk of physical disability, remain long. We aimed to identify the representations of stroke in the general population and to determine barriers to and facilitators for rapidly contacting EMS.We conducted a qualitative study among the general population with 10 focus groups, 5 comprising employed people (N = 29) and 5 comprising retirees (N = 32). The themes discussed were general knowledge about stroke and its risk factors, symptoms, appropriate management and the awareness that stroke is an emergency issue.In addition to a lack of knowledge about stroke, other barriers to rapidly contacting the EMS were difficulties in recognizing symptoms and understanding that these symptoms constitute an emergency. Furthermore, when faced with stroke, a feeling of inevitability and fatalism about the consequences of a stroke was highlighted. Participants were unaware of the existence of an effective treatment and they mistrusted medical competences. Finally, we found a strong presence and participant appreciation of common knowledge, resulting in the sharing of experiences of stroke. This could partly compensate for the lack of specific knowledge about symptom recognition and appropriate action.Information campaigns should not only inform the public about stroke symptoms in order to ensure people act appropriately, but should also focus on increasing public awareness about the fact that an effective treatment exists.
| S-EPMC4898830 | biostudies-other
Project description:BackgroundAlthough approximately 10% of new mothers in Canada develop postpartum depression (PPD), they face many barriers when accessing care. eHealth offers a unique opportunity to provide psychosocial skills and support to new mothers; however, patient populations are not consistently engaged in eHealth development processes. Thus, the diversity of women's backgrounds and needs are often not reflected in existing tools.ObjectiveThis study aims to engage women from a variety of backgrounds and locations around British Columbia (BC) who have previously experienced PPD to determine the unmet psychoeducational needs of women with PPD and how a web-enabled platform used to deliver psychosocial skills and education to assist in the management of PPD could fulfill those needs.MethodsFocus groups were conducted in 7 cities across BC with a total of 31 women (mean age 34.5 years, SD 4.9), with each group ranging from 2-7 participants. Focus groups were cofacilitated by the study coordinator and a local service provider in each community using a semistructured guide to discuss participants' needs, ideas, and opinions as they relate to the use of technology in PPD management. Transcripts were approached inductively using thematic analysis to identify themes and qualitative description to frame what was observed in the data.ResultsA total of 5 themes were identified: bridging gaps to meet needs; providing validation to combat stigma; nurturing capacity to cope, manage, and/or reach wellness; empowering people to take ownership over their mental health; and offering customization to ensure relevance. Each theme identified a need (eg, combatting stigma) and a way to address that need using a web-enabled intervention (eg, providing validation). At the intersection of these themes was the overarching value of promoting agency for women experiencing PPD.ConclusionsUltimately, new mothers require accessible mental health care that promotes their agency in mental health care decision making. Our participants believed that a web-enabled intervention could help meet this need. These data will be used to guide the design of such an intervention, with the eventual implementation of this resource as a first-line management option for PPD.
| S-EPMC7817361 | biostudies-literature