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1.
J Pain ; : 104515, 2024 Mar 24.
Article in English | MEDLINE | ID: mdl-38522593

ABSTRACT

Persons with fibromyalgia experience a diverse set of symptoms. Recommendations for management generally focus on multidisciplinary approaches involving multiple modalities. Mobile apps can be an essential component for self-management, yet little is known about how persons with fibromyalgia use mobile apps for health-related purposes. A cross-sectional survey (N = 663) was conducted to understand the real-world use of apps among persons with fibromyalgia. The survey included 2 main foci: 1) eHealth literacy and use of information sources, and 2) mobile app use patterns and preferences for health-related purposes, including the types of apps used and usage characteristics of apps currently in use, as well as those that had been discontinued. Respondents' average eHealth literacy as measured by eHealth Literacy Scale (eHEALS) was 31.4 (SD = 7.1), and they utilized diverse information sources. Approximately two-thirds of the sample used mobile apps; the remaining one-third did not. Diverse health management needs were represented in the apps reported, including scheduling/time management, notetaking, fitness, and wellness. Compared to apps that had been discontinued, participants rated apps that they still used higher in terms of ease of use and used them more frequently. Reasons for discontinuing app use included issues with privacy, the effort required, lack of interest, and lack of perceived quality. Other reasons for app nonuse were lack of awareness and how-to knowledge, indicating that disseminating information about apps and addressing other barriers, such as providing user support, are critical to increasing uptake. These study findings can inform both app design and dissemination. PERSPECTIVE: This article presents how persons with fibromyalgia use mobile apps to manage their health. The findings could inform the development of digital interventions or programs for this population.

2.
Eur J Hum Genet ; 32(1): 77-82, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37752309

ABSTRACT

Population genetic screening for preventable adult-onset hereditary conditions may improve disease management and morbidity but most individuals will receive uninformative results that do not indicate higher risk for disease. Investigation into subsequent psychosocial health and behaviors is necessary to inform population screening feasibility, effectiveness, and cost considerations. We conducted a prospective survey study of unselected University of Washington Medicine patients enrolled in a genetic research study screening for pathogenic variation in medically important genes. Survey questions adapted from the Feelings About genomiC Testing Results (FACToR) questionnaire and designed to understand perceived disease risk change and planned health behaviors were administered after receipt of results. Overall, 2761 people received uninformative results and 1352 (49%) completed survey items. Respondents averaged 41 years old, 62% were female, and 56% were Non-Hispanic Asian. Results from the FACToR instrument showed mean (SD) scores of 0.92 (1.34), 7.63 (3.95), 1.65 (2.23), and 0.77 (1.50) for negative emotions, positive emotions, uncertainty, and privacy concerns, respectively, suggesting minimal psychosocial harms from genetic screening. Overall, 12.2% and 9.6% of survey respondents believed that their risk of cancer or heart disease, respectively, had changed after receiving their uninformative genetic screening results. Further, 8.5% of respondents planned to make healthcare changes and 9.1% other behavior changes. Future work is needed to assess observed behavior changes attributable to uninformative screening results and if small changes in behavior among this population have large downstream impacts.


Subject(s)
Genetic Testing , Stress, Psychological , Adult , Humans , Female , Male , Prospective Studies , Genetic Testing/methods , Uncertainty , Perception
3.
Proc Assoc Inf Sci Technol ; 60(1): 908-910, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37901889

ABSTRACT

This poster considers the role that information and context may play in health management. We employ a well-known taxonomy of techniques for promoting behavioral change to consider how social media authors describe their recovery from substance use. We harvest discussion posts from subreddits, or discussion forums, about alcohol, cannabis, and opioids, and perform content analysis to identify behavioral change techniques (BCTs) described in the content. We then consider the role that the context of information use plays in these BCTs, as well as how interventions and technologies might be leveraged to better support the recovery process.

4.
Public Health Genomics ; 26(1): 113-122, 2023.
Article in English | MEDLINE | ID: mdl-37604133

ABSTRACT

INTRODUCTION: Genetic screening for preventable adult-onset hereditary conditions has been proposed as a mechanism to reduce health disparities. Analysis of how race and ethnicity influence decision-making to receive screening can inform recruitment efforts and more equitable population screening design. A study at the University of Washington Medicine that invited unselected patients to participate in genetic screening for pathogenic variation in medically important genes provided an opportunity to evaluate these factors. METHODS: We analyzed screening enrollee survey data to understand factors most important and least important in decision-making about screening overall and across different race and ethnicity groups. Electronic health record race and ethnicity and survey-reported race and ethnicity were compared to assist with interpretation. Comments provided about reasons for not enrolling in screening were analyzed using content analysis. RESULTS: Overall, learning about disease risk and identifying risk early for prevention purposes were important factors in decision-making to receive screening, and regrets about screening and screening being against one's moral code were not viewed as important. Although racial identity was challenging to assign in all cases, compared to other enrollees, African-American and Asian enrollees considered test accuracy and knowing more about the test to be of greater importance. Three themes emerged related to nonparticipation: benefits do not outweigh risks, don't want to know, and challenges with study logistics. CONCLUSION: Our results highlight important motivators for receiving screening and areas that can be addressed to increase screening interest and accessibility. This knowledge can inform future population screening program design including recruitment and education approaches.


Subject(s)
Ethnicity , Genetic Testing , Racial Groups , Adult , Humans , Black or African American , Socioeconomic Factors , Surveys and Questionnaires , Decision Making
5.
J Biomed Inform ; 144: 104439, 2023 08.
Article in English | MEDLINE | ID: mdl-37419375

ABSTRACT

OBJECTIVE: In recent years, we have increasingly observed issues concerning quality of online information due to misinformation and disinformation. Aside from social media, there is growing awareness that questionnaire data collected using online recruitment methods may include suspect data provided by bots. Issues with data quality can be particularly problematic in health and/or biomedical contexts; thus, developing robust methods for suspect data identification and removal is of paramount importance in informatics. In this study, we describe an interactive visual analytics approach to suspect data identification and removal and demonstrate the application of this approach on questionnaire data pertaining to COVID-19 derived from different recruitment venues, including listservs and social media. METHODS: We developed a pipeline for data cleaning, pre-processing, analysis, and automated ranking of data to address data quality issues. We then employed the ranking in conjunction with manual review to identify suspect data and remove them from subsequent analyses. Last, we compared differences in the data before and after removal. RESULTS: We performed data cleaning, pre-processing, and exploratory analysis on a survey dataset (N = 4,163) collected using multiple recruitment mechanins using the Qualtrics survey platform. Based on these results, we identified suspect features and used these to generate a suspect feature indicator for each survey response. We excluded survey responses that did not fit the inclusion criteria for the study (n = 29) and then performed manual review of the remaining responses, triangulating with the suspect feature indicator. Based on this review, we excluded 2,921 responses. Additional responses were excluded based on a spam classification by Qualtrics (n=13), and the percentage of survey completion (n=328), resulting in a final sample size of 872. We performed additional analyses to demonstrate the extent to which the suspect feature indicator was congruent with eventual inclusion, as well as compared the characteristics of the included and excluded data. CONCLUSION: Our main contributions are: 1) a proposed framework for data quality assessment, including suspect data identification and removal; 2) the analysis of potential consequences in terms of representation bias in the dataset; and 3) recommendations for implementation of this approach in practice.


Subject(s)
COVID-19 , Social Media , Humans , COVID-19/epidemiology , Surveys and Questionnaires , Software , Data Accuracy
6.
JMIR Cancer ; 9: e43126, 2023 Apr 20.
Article in English | MEDLINE | ID: mdl-37079361

ABSTRACT

BACKGROUND: Cascade screening, defined as helping at-risk relatives get targeted genetic testing of familial variants for dominant hereditary cancer syndromes, is a proven component of cancer prevention; however, its uptake is low. We developed and conducted a pilot study of the ConnectMyVariant intervention, in which participants received support to contact at-risk relatives that extended beyond first-degree relatives and encourage relatives to obtain genetic testing and connect with others having the same variant through email and social media. The support that participants received included listening to participants' needs, assisting with documentary genealogy to find common ancestors, facilitating direct-to-consumer DNA testing and interpretation, and assisting with database searches. OBJECTIVE: We aimed to assess intervention feasibility, motivations for participating, and engagement among ConnectMyVariant participants and their families. METHODS: We used a mixed methods design including both quantitative and qualitative evaluation methods. First, we considered intervention feasibility by characterizing recruitment and retention using multiple recruitment mechanisms, including web-based advertising, dissemination of invitations with positive test results, provider recruitment, snowball sampling, and recruitment through web-based social networks and research studies. Second, we characterized participants' motivations, concerns, and engagement through project documentation of participant engagement in outreach activities and qualitative analysis of participant communications. We used an inductive qualitative data analysis approach to analyze emails, free-text notes, and other communications generated with participants as part of the ConnectMyVariant intervention. RESULTS: We identified 84 prospective participants using different recruitment mechanisms; 57 participants were ultimately enrolled in the study for varying lengths of time. With respect to motivations for engaging in the intervention, participants were most interested in activities relating to genealogy and communication with others who had their specific variants. Although there was a desire to find others with the same variant and prevent cancer, more participants expressed an interest in learning about their genealogy and family health history, with prevention in relatives considered a natural side effect of outreach. Concerns about participation included whether relatives would be open to communication, how to go about it, and whether others with a specific variant would be motivated to help find common ancestors. We observed that ConnectMyVariant participants engaged in 6 primary activities to identify and communicate with at-risk relatives: sharing family history, family member testing, direct-to-consumer genealogy genetic testing analysis, contacting (distant) relatives, documentary genealogy, and expanding variant groups or outreach. Participants who connected with others who had the same variant were more likely to engage with several extended family outreach activities. CONCLUSIONS: This study demonstrated that there is an interest in extended family outreach as a mechanism to improve cascade screening for hereditary cancer prevention. Additional research to systematically evaluate the outcomes of such outreach may be challenging but is warranted.

7.
Genome Med ; 15(1): 26, 2023 04 18.
Article in English | MEDLINE | ID: mdl-37069702

ABSTRACT

BACKGROUND: Population screening for genetic risk of adult-onset preventable conditions has been proposed as an attractive public health intervention. Screening unselected individuals can identify many individuals who will not be identified through current genetic testing guidelines. METHODS: We sought to evaluate enrollment in and diagnostic yield of population genetic screening in a resource-limited setting among a diverse population. We developed a low-cost, short-read next-generation sequencing panel of 25 genes that had 98.4% sensitivity and 99.98% specificity compared to diagnostic panels. We used email invitations to recruit a diverse cohort of patients in the University of Washington Medical Center system unselected for personal or family history of hereditary disease. Participants were sent a saliva collection kit in the mail with instructions on kit use and return. Results were returned using a secure online portal. Enrollment and diagnostic yield were assessed overall and across race and ethnicity groups. RESULTS: Overall, 40,857 people were invited and 2889 (7.1%) enrolled. Enrollment varied across race and ethnicity groups, with the lowest enrollment among African American individuals (3.3%) and the highest among Multiracial or Other Race individuals (13.0%). Of 2864 enrollees who received screening results, 106 actionable variants were identified in 103 individuals (3.6%). Of those who screened positive, 30.1% already knew about their results from prior genetic testing. The diagnostic yield was 74 new, actionable genetic findings (2.6%). The addition of more recently identified cancer risk genes increased the diagnostic yield of screening. CONCLUSIONS: Population screening can identify additional individuals that could benefit from prevention, but challenges in recruitment and sample collection will reduce actual enrollment and yield. These challenges should not be overlooked in intervention planning or in cost and benefit analysis.


Subject(s)
Genetic Testing , Racial Groups , Adult , Humans , Genetic Testing/methods , Risk Factors , Black or African American , Ethnicity
8.
JAMIA Open ; 6(1): ooac101, 2023 Apr.
Article in English | MEDLINE | ID: mdl-36950472

ABSTRACT

Objective: To assess the extent to which health disparities content is integrated in multidisciplinary health informatics training programs and examine instructor perspectives surrounding teaching strategies and challenges, including student engagement with course material. Materials and Methods: Data for this cross-sectional, descriptive study were collected between April and October 2019. Instructors of informatics courses taught in the United States were recruited via listservs and email. Eligibility was contingent on course inclusion of disparities content. Participants completed an online survey with open- and closed-ended questions to capture administrative- and teaching-related aspects of disparities education within informatics. Quantitative data were analyzed using descriptive statistics; qualitative data were analyzed using inductive coding. Results: Invitations were sent to 141 individuals and 11 listservs. We obtained data from 23 instructors about 24 informatics courses containing health disparities content. Courses were taught primarily in graduate-level programs (n = 21, 87.5%) in informatics (n = 9, 33.3%), nursing (n = 7, 25.9%), and information science (n = 6, 22.2%). The average course covered 6.5 (range 2-13) social determinants of health; socioeconomic status and race/ethnicity (both n = 21, 87.5%) were most frequently addressed. Instructors described multiple obstacles, including lack of resources and time to cover disparities topics adequately, topic sensitivity, and student-related challenges (eg, lack of prior understanding about disparities). Discussion: A foundational and translational knowledge in health disparities is critical to a student's ability to develop future equitable informatics solutions. Based on our findings, we provide recommendations for the intentional and required integration of health disparities-specific content in informatics curricula and competencies.

9.
Comput Inform Nurs ; 41(9): 665-672, 2023 Sep 01.
Article in English | MEDLINE | ID: mdl-36728155

ABSTRACT

Social media may facilitate older adults' ability to engage socially and explore health information, but it can present difficulties for older adults. Therefore, it is important to explore older adults' experience of usability and user engagement. We conducted two rounds of pilot studies where we used Facebook to engage older adults. We performed a mixed-methods evaluation of user engagement and usability. A directed content analysis of qualitative data from the pilot studies was used to explore engagement and perceived usability, and the Mann-Whitney U test was used to examine differences in feature usage and engagement. We analyzed qualitative data from 13 participants. Qualitative data analysis yielded themes pertaining to three main domains: user engagement , usability , and usability related to aging-related changes . In terms of user engagement and usability, participants in both pilot studies reported positive feedback on felt involvement and endurability, and the second pilot group reported more positive comments regarding perceived usefulness compared with the first pilot group. There was no statistically significant difference in usage over the two studies. The findings of this study suggest opportunities to improve older adults' experience of online discussion platforms. Considering changes that improve perceived aesthetic appeal and focused attention will be helpful.


Subject(s)
Social Media , Humans , Aged , Pilot Projects
10.
J Med Internet Res ; 24(7): e38595, 2022 07 07.
Article in English | MEDLINE | ID: mdl-35797100

ABSTRACT

BACKGROUND: Web-based interventions aimed at supporting informal caregivers of people living with dementia have the potential to improve caregivers' well-being and psychological health. However, few interventions are widely implemented for this population, and none of the prior reviews have systematically examined the use of behavior change techniques (BCTs), theories, and agents in web-based interventions for informal caregivers of people living with dementia. To better understand this implementation gap, we reviewed the literature to map behavioral factors (BCTs, theories, and agents) deployed in the studies. Furthermore, because there is an emerging consensus that retention could be shaped by participant characteristics and behavioral factors, we explored relationships between these features and retention rates across studies. OBJECTIVE: We pursued 3 objectives: to map behavioral factors involved in the web-based interventions for informal caregivers of people living with dementia; to examine the relationship between behavioral change elements and retention in the studies; and to examine the relationship between participant characteristics (gender, age, and spouse or adult children caregiver proportion) and study retention. METHODS: We conducted a literature review using the following keywords and their corresponding Medical Subject Headings terms: dementia, caregivers, and web-based intervention. The time limits were January 1998 to March 2022. Using the BCTv1 taxonomy, which specifies active behavioral components in interventions, 2 coders collected, summarized, and analyzed the frequency distributions of BCTs. Similarly, they abstracted and analyzed participant characteristics, behavior change theories, behavior change agents, and retention rates in the studies. RESULTS: The average age was 61.5 (SD 7.4) years, and the average proportion of spousal informal caregivers, adult children informal caregivers, and retention rates were 51.2% (SD 24.8%), 44.8% (SD 22%), and 70.4% (SD 17%), respectively. Only 53% (17/32) of the studies used behavior change theories, but 81% (26/32) included behavior change agents. The most common BCTv1 clusters were shaping knowledge and social support. The median number of BCTv1 clusters was 5 (IQR 3). We observed a negative correlation between the proportion of spousal informal caregivers and the retention rate (r=-0.45; P=.02) and between the number of BCTv1 clusters and retention rates (r=-0.47; P=.01). We also found that the proportion of adult children informal caregivers in the study was significantly and positively correlated with the retention rate (r=0.5; P=.03). No other participant characteristics or behavioral factors were associated with retention rates. CONCLUSIONS: We found that almost half of the studies were not informed by behavior change theories. In addition, spousal involvement and a higher number of BCTs were each associated with lower retention rates, while the involvement of adult children caregivers in the study was associated with higher retention. In planning future studies, researchers should consider matching participant characteristics with their intended intervention as the alignment might improve their retention rates.


Subject(s)
Dementia , Internet-Based Intervention , Adult , Humans , Middle Aged , Caregivers/psychology , Dementia/psychology , Dementia/therapy , Mental Health , Social Support , Adult Children , Aged
11.
JMIR Form Res ; 6(7): e37108, 2022 Jul 29.
Article in English | MEDLINE | ID: mdl-35904843

ABSTRACT

BACKGROUND: Compared to other types of dementia, family caregivers of people with Lewy body dementia (LBD) report higher stress levels and more severe depressive symptoms. Although several digital support interventions for caregivers of persons with dementia exist, few target LBD specifically or leverage a fully remote and asynchronous approach suitable for pandemic circumstances. OBJECTIVE: We performed a pilot evaluation of a digital intervention designed to help caregivers of people with LBD address challenges they have experienced, with the end goal of reducing psychological distress in this population. METHODS: We recruited 15 family caregivers of people with LBD to participate in the quasi-experimental, single-arm, mixed methods study titled Virtual Online Communities for Aging Life Experience-Lewy Body Dementia (VOCALE-LBD). The study offers an 8-week web-based intervention that uses a digital discussion platform and involves moderation, peer-to-peer support, didactic training, and problem-solving skill enactment. RESULTS: Participants' baseline characteristics were the following: mean age 66 (SD 8) years; 14 of 15 (93%) of them were female; all (15/15, 100%) were White; and 8 (53%) of them had at least a postgraduate degree. Throughout the intervention, participants engaged in weekly web-based discussions, generating a total of 434 posts (average 4 posts per week). Attrition was 20% (3/15). Upon study exit, participants showed the following average improvements: 3.0 (SD 6.0) in depression, 8.3 (SD 16.7) in burden, 2.9 (SD 6.8) in stress, and 0.3 (SD 0.8) in loneliness. When looking at the proportion of participants with clinically significant improvement versus those with a worsening of ≥0.5 SD for each outcome, we observed net improvements of 50% (6/12), 33% (4/12), 25% (3/12), and 25% (3/12) in depression, loneliness, burden, and stress, respectively. In terms of the benefits of participation, participants reported that participation helped them "a great deal" to (1) improve their understanding of LBD (9/12, 75%), (2) gain confidence in dealing with difficult behaviors of the care recipient (6/12, 50%), and (3) improve in one's abilities to provide care to the care recipient (4/12, 33%). CONCLUSIONS: The study generated promising feasibility and preliminary efficacy data for a low-cost, web-based intervention designed for caregivers of persons with LBD. Though the study was not powered for significance, we observed nominal average and net improvements in important psychological outcomes. Moreover, many caregivers reported that study participation helped them better understand the disease, feel more confident in dealing with difficult behaviors of the care recipient, and improve their ability to care for the care recipient. If validated in future studies, the intervention could be an accessible, on-demand resource for caregivers, enabling them to engage in moderated remote discussions with peers at their own convenience in terms of location, time of the day, and frequency.

13.
Geriatr Nurs ; 46: 52-60, 2022.
Article in English | MEDLINE | ID: mdl-35605551

ABSTRACT

Older adults with cognitive impairment often face difficulties with comprehension and communication, which can impact other cognitive processes such as decision-making. This scoping review investigates how visual methods can support older adults with cognitive impairment. The review involved querying four databases. From these databases, eleven articles fit inclusion criteria. This paper examines the purposes, use contexts, types, and effectiveness of the visual methods described in each study. The two major use contexts were elicitation of thoughts, feelings, and preferences in everyday life and health/healthcare related uses. Studies that used visual methods for eliciting preferences generally employed static visualizations. Health-related contexts employed more complex and interactive visualizations. Three studies used visual tools to support older adults in understanding; six, communication; and three, decision-making. None addressed all three outcomes of interest. This study provides recommendations and future directions for visual communication research with older adults with cognitive impairment.


Subject(s)
Cognitive Dysfunction , Communication , Aged , Humans
14.
Hum Mutat ; 43(5): 547-556, 2022 05.
Article in English | MEDLINE | ID: mdl-35225377

ABSTRACT

Clinical genetic sequencing tests often identify variants of uncertain significance. One source of data that can help classify the pathogenicity of variants is familial cosegregation analysis. Identifying and genotyping relatives for cosegregation analysis can be time consuming and costly. We propose an algorithm that describes a single measure of expected variant information gain from genotyping a single additional relative in a family. Then we explore the performance of this algorithm by comparing actual recruitment strategies used in 35 families who had pursued cosegregation analysis with synthetic pedigrees of possible testing outcomes if the families had pursued an optimized testing strategy instead. For each actual and synthetic pedigree, we calculated the likelihood ratio of pathogenicity as each successive test was added to the pedigree. We analyzed the differences in cosegregation likelihood ratio over time resulting from actual versus optimized testing approaches. Employing the testing strategy indicated by the algorithm would have led to maximal information more rapidly in 30 of the 35 pedigrees (86%). Many clinical and research laboratories are involved in targeted cosegregation analysis. The algorithm we present can facilitate a data driven approach to optimal relative recruitment and genotyping for cosegregation analysis and more efficient variant classification.


Subject(s)
Genetic Testing , Genetic Variation , Algorithms , Genetic Testing/methods , Humans , Pedigree
15.
BMC Palliat Care ; 21(1): 24, 2022 Feb 17.
Article in English | MEDLINE | ID: mdl-35177049

ABSTRACT

BACKGROUND: Uncertainty has been associated with distress and poorer quality of life in patients with advanced cancer. Prior studies have focused on prognostic uncertainty; little is known about other types of uncertainty that patients and family members experience when discussing goals of care. Understanding the types of uncertainty expressed and differences between Black and White patients can inform the development of uncertainty management interventions. METHODS: This study sought to characterize the types of uncertainty expressed by Black and White patients and family members within the context of information needs during inpatient goals-of-care discussions. We performed a secondary analysis of transcripts from 62 recorded goals-of-care discussions that occurred between 2012 and 2014 at an urban, academic medical center in the United States. We applied an adapted taxonomy of uncertainty to data coded as describing information needs and used an inductive qualitative analysis method to analyze the discussions. We report the types of uncertainty expressed in these discussions. RESULTS: Fifty discussions included patient or family expressions of information needs. Of these, 40 discussions (n=16 Black and n=24 White) included statements of uncertainty. Black and White patients and families most frequently expressed uncertainty related to processes and structures of care (system-centered uncertainty) and to treatment (scientific uncertainty). Statements of prognostic uncertainty focused on quantitative information among Whites and on qualitative information and expectations for the future among Blacks. CONCLUSIONS: Black and White patients and families frequently expressed system-centered uncertainty, suggesting this may be an important target for intervention. Addressing other sources of uncertainty, such as prognostic uncertainty, may need more tailored approaches.


Subject(s)
Goals , Quality of Life , Family , Humans , Qualitative Research , Uncertainty
16.
Drug Alcohol Depend Rep ; 3: 100061, 2022 Jun.
Article in English | MEDLINE | ID: mdl-36845987

ABSTRACT

Background: Stigma associated with substance use can have severe negative consequences for physical and mental health and serve as a barrier to treatment. Yet, research on stigma processes and stigma reduction interventions is limited. Aim: We use a social media dataset to examine: 1) the nature of stigma-related experience related to substance use; and 2) salient affective and temporal factors in the use of three substances: alcohol, cannabis, and opioids. Methods: We harvested several years of data pertaining to three substances - alcohol, cannabis, and opioids - from Reddit, a popular social networking platform. For Part I, we selected posts based on stigma-related keywords, performed content analysis, and rendered word clouds to examine the nature of stigma associated with these substances. In Part II, we employed natural language processing in conjunction with hierarchical clustering and visualization to explore temporal and affective factors. Results: In Part I, internalized stigma was most commonly exhibited. Anticipated and enacted stigma were less common in posts relating to cannabis compared to the other two substances. Work, home, and school were important contexts in which stigma was observed. Part II showed that temporal markers were prominent; post authors shared stories of substance use journeys, and timelines of their experience with quitting and withdrawals. Shame, sadness, anxiety, and fear were common, with shame being more prominent in alcohol-related posts. Conclusion: Our findings highlight the importance of contextual factors in substance use recovery and stigma reduction and offer directions for future interventions.

17.
Drug Alcohol Depend ; 228: 109016, 2021 11 01.
Article in English | MEDLINE | ID: mdl-34560332

ABSTRACT

INTRODUCTION: The relationship between cannabis, tobacco, and vaping devices is both rapidly changing and poorly understood, with consumers rapidly shifting between use of all three product types. Given this dynamic and evolving landscape, there is an urgent need to monitor and better understand co-use, dual-use, and transition patterns between these products. This study describes work that utilizes social media - in this case, Reddit - in conjunction with automated Natural Language Processing (NLP) methods to better understand cannabis, tobacco, and vaping device product usage patterns. METHODS: We collected Reddit data from the period 2013-2018, sourced from eight popular, high-volume Reddit communities (subreddits) related to the three product categories. We then manually annotated (coded) a set of 2640 Reddit posts and trained a machine learning-based NLP algorithm to automatically identify and disambiguate between cannabis or tobacco mentions (both smoking and vaping) in Reddit posts. This classifier was then applied to all data derived from the eight subreddits, 767,788 posts in total. RESULTS: The NLP algorithm achieved an overall moderate performance (overall F-score of 0.77). When applied to our large corpus of Reddit posts, we discovered that over 10% of posts in the smoking cessation subreddit r/stopsmoking were classified as referring to vaping nicotine, and that only 2% of posts from the subreddits r/electronic_cigarette and r/vaping were classified as referring to smoking (tobacco) cessation. CONCLUSIONS: This study presents the results of applying an NLP algorithm designed to identify and distinguish between cannabis and tobacco mentions (both smoking and vaping) in Reddit posts, hence contributing to our currently limited understanding of co-use, dual-use, and transition patterns between these products.


Subject(s)
Cannabis , Electronic Nicotine Delivery Systems , Social Media , Tobacco Products , Vaping , Humans , Natural Language Processing , Prevalence , Nicotiana
18.
Gerontol Geriatr Med ; 7: 2333721420985684, 2021.
Article in English | MEDLINE | ID: mdl-33457461

ABSTRACT

Background: There is a need for interventions to promote health management of older adults with pre-frailty and frailty. Technology poses promising solutions, but questions exist about effective delivery. Objectives: We present the results of a mixed-methods pilot evaluation of Virtual Online Communities for Older Adults (VOCALE), an 8-week intervention conducted in the northwestern United States, in which participants shared health-related experiences and applied problem solving skills in a Facebook group. Methods: We performed a mixed-methods process evaluation, integrating quantitative and qualitative data, to characterize the intervention and its effects. We focus on four areas: health-related measures (health literacy and self-efficacy), participation, problem solving skills enacted, and subjective feedback. Results: Eight older adults with pre-frailty and frailty (age = 82.7 ± 6.6 years) completed the study. There was an upward trend in health literacy and health self-efficacy post-intervention. Participants posted at least two times per week. Content analysis of 210 posts showed participants were able to apply the problem solving skills taught, and exit interviews showed participants' increased awareness of the need to manage health, and enjoyment in learning about others. Conclusion: This mixed-methods evaluation provides insight into feasibility and design considerations for online interventions to promote health management among vulnerable older adults.

19.
Geriatr Nurs ; 42(1): 188-195, 2021.
Article in English | MEDLINE | ID: mdl-32863038

ABSTRACT

The emergence of Coronavirus Disease 2019 (COVID-19) and social distancing measures has serious implications, particularly those age 65 and older. We performed a qualitative analysis of online discussion data generated by older adults with pre-frailty and frailty while subject to a state stay-at-home order. We provided participants with prompts relating to the public health emergency, collected 60 posts, and analyzed them using a general inductive analytic method. We report on: (1) the impact of the pandemic on daily life; (2) preparedness, perceptions, and behavior; (3) information and technology use; and (4) social impacts. Participants' lives of changed in many ways, including the adoption of precautionary measures and altered daily routines. Participants experienced negative emotional consequences including stress, worry, and anxiety. Information and technology use kept participants informed and connected. Participants reported varying degrees of preparedness. Our study findings provide insight into ways to support vulnerable older adults in pandemic circumstances.


Subject(s)
Anxiety/psychology , COVID-19/prevention & control , Frailty/psychology , Health Behavior , Social Isolation/psychology , Telecommunications , Aged , Aged, 80 and over , COVID-19/epidemiology , COVID-19/psychology , Female , Humans , Internet Use , Male , Telemedicine
20.
Front Public Health ; 9: 738513, 2021.
Article in English | MEDLINE | ID: mdl-35071153

ABSTRACT

Background: Perceptions of tobacco, cannabis, and electronic nicotine delivery systems (ENDS) are continually evolving in the United States. Exploring these characteristics through user generated text sources may provide novel insights into product use behavior that are challenging to identify using survey-based methods. The objective of this study was to compare the topics frequently discussed among Reddit members in cannabis, tobacco, and ENDS-specific subreddits. Methods: We collected 643,070 posts on the social media site Reddit between January 2013 and December 2018. We developed and validated an annotation scheme, achieving a high level of agreement among annotators. We then manually coded a subset of 2,630 posts for their content with relation to experiences and use of the three products of interest, and further developed word cloud representations of the words contained in these posts. Finally, we applied Latent Dirichlet Allocation (LDA) topic modeling to the 643,070 posts to identify emerging themes related to cannabis, tobacco, and ENDS products being discussed on Reddit. Results: Our manual annotation process yielded 2,148 (81.6%) posts that contained a mention(s) of either cannabis, tobacco, or ENDS with 1,537 (71.5%) of these posts mentioning cannabis, 421 (19.5%) mentioning ENDS, and 264 (12.2%) mentioning tobacco. In cannabis-specific subreddits, personal experiences with cannabis, cannabis legislation, health effects of cannabis use, methods and forms of cannabis, and the cultivation of cannabis were commonly discussed topics. The discussion in tobacco-specific subreddits often focused on the discussion of brands and types of combustible tobacco, as well as smoking cessation experiences and advice. In ENDS-specific subreddits, topics often included ENDS accessories and parts, flavors and nicotine solutions, procurement of ENDS, and the use of ENDS for smoking cessation. Conclusion: Our findings highlight the posting and participation patterns of Reddit members in cannabis, tobacco, and ENDS-specific subreddits and provide novel insights into aspects of personal use regarding these products. These findings complement epidemiologic study designs and highlight the potential of using specific subreddits to explore personal experiences with cannabis, ENDS, and tobacco products.


Subject(s)
Cannabis , Tobacco Products , Vaping , Humans , Natural Language Processing , Nicotiana , United States
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