LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy.

BACKGROUND: Emerging literature suggests that LGBTQ+ cancer survivors are more likely to experience financial burden than non-LGBTQ+ survivors. However, LGBTQ+ cancer survivors experience with cost-coping behaviors such as crowdfunding is understudied. METHODS: We aimed to assess LGBTQ+ inequity in cancer crowdfunding by combining community-engaged and technology-based methods. Crowdfunding campaigns were web-scraped from GoFundMe and classified as cancer-related and LGBTQ+ or non-LGBTQ+ using term dictionaries. Bivariate analyses and generalized linear models were used to assess differential effects in total goal amount raised by LGBTQ+ status. Stratified models were run by online reach and LGBTQ+ inclusivity of state policy. RESULTS: A total of N = 188,342 active cancer-related crowdfunding campaigns were web-scraped from GoFundMe in November 2022, of which N = 535 were LGBTQ+ and ranged from 2014 to 2022. In multivariable models of recent campaigns (2019-2022), LGBTQ+ campaigns raised $1608 (95% CI: -2139, -1077) less than non-LGBTQ+ campaigns. LGBTQ+ campaigns with low (26-45 donors), moderate (46-87 donors), and high (88-240 donors) online reach raised on average $1152 (95% CI: -$1589, -$716), $1050 (95% CI: -$1737, -$364), and $2655 (95% CI: -$4312, -$998) less than non-LGBTQ+ campaigns respectively. When stratified by LGBTQ+ inclusivity of state level policy states with anti-LGBTQ+ policy/lacking equitable policy raised on average $1910 (95% CI: -2640, -1182) less than non-LGBTQ+ campaigns from the same states. CONCLUSIONS AND RELEVANCE: Our findings revealed LGBTQ+ inequity in cancer-related crowdfunding, suggesting that LGBTQ+ cancer survivors may be less able to address financial burden via crowdfunding in comparison to non-LGBTQ+ cancer survivors-potentially widening existing economic inequities.

Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies.

BACKGROUND: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities. OBJECTIVE: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding. METHODS: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related. RESULTS: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement. CONCLUSIONS: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.

Social Enhancement and Compensation in Online Social Support among Cancer Patients: The Role of Social Network Properties.

Although several researchers have reported evidence that the benefits of Internet use depend on users' offline resources, the factors responsible for this phenomenon are not well understood. We examined a network-based explanation for social enhancement (i.e., rich get richer) and social compensation (i.e., poor get richer) in the context of received social support among adults coping with cancer. After first controlling for support received offline, we tested the role of two offline network properties in predicting support received online. The results were mostly consistent with social enhancement. Offline group affiliation was associated with greater levels of support received online. Additionally, significant indirect effects were observed from offline group affiliation to support received online through online group affiliation as well as from offline tie strength to support received online through online tie strength.

A Test of The Risk Perception Attitude Framework as a Message Tailoring Strategy to Promote Diabetes Screening.

The risk perception attitude (RPA) framework was tested as a message tailoring strategy to encourage diabetes screening. Participants (N = 602) were first categorized into one of four RPA groups based on their diabetes risk and efficacy perceptions and then randomly assigned to receive a message that matched their RPA, mismatched their RPA, or a control message. Participants receiving a matched message reported greater intentions to engage in self-protective behavior than participants who received a mismatched message or the control message. The results also showed differences in attitudes and behavioral intentions across the four RPA groups. Participants in the responsive group had more positive attitudes toward diabetes screening than the other three groups, whereas participants in the indifferent group reported the weakest intentions to engage in self-protective behavior.

Perceived Stress in Online Prostate Cancer Community Participants: Examining Relationships with Stigmatization, Social Support Network Preference, and Social Support Seeking.

Men with prostate cancer often need social support to help them cope with illness-related physiological and psychosocial challenges. Whether those needs are met depends on receiving support optimally matched to their needs. This study examined relationships between perceived stress, prostate cancer-related stigma, weak-tie support preference, and online community use for social support in a survey of online prostate cancer community participants (n = 149). Findings revealed a positive relationship between stigma and perceived stress. This relationship, however, was moderated by weak-tie support preference and online community use for social support. Specifically, stigma was positively related to perceived stress when weak-tie support was preferred. Analyses also showed a positive relationship between stigma and perceived stress in those who used their online community for advice or emotional support. Health communication scholars should work collaboratively with diagnosed men, clinicians, and online community administrators to develop online interventions that optimally match social support needs.

Information Seeking in Uncertainty Management Theory: Exposure to Information About Medical Uncertainty and Information-Processing Orientation as Predictors of Uncertainty Management Success.

Uncertainty management theory outlines the processes through which individuals cope with health-related uncertainty. Information seeking has been frequently documented as an important uncertainty management strategy. The reported study investigates exposure to specific types of medical information during a search, and one's information-processing orientation as predictors of successful uncertainty management (i.e., a reduction in the discrepancy between the level of uncertainty one feels and the level one desires). A lab study was conducted in which participants were primed to feel more or less certain about skin cancer and then were allowed to search the World Wide Web for skin cancer information. Participants' search behavior was recorded and content analyzed. The results indicate that exposure to two health communication constructs that pervade medical forms of uncertainty (i.e., severity and susceptibility) and information-processing orientation predicted uncertainty management success.

An examination of the relationships among uncertainty, appraisal, and information-seeking behavior proposed in uncertainty management theory.

Uncertainty management theory (UMT; Brashers, 2001, 2007) is rooted in the assumption that, as opposed to being inherently negative, health-related uncertainty is appraised for its meaning. Appraisals influence subsequent behaviors intended to manage uncertainty, such as information seeking. This study explores the connections among uncertainty, appraisal, and information-seeking behavior proposed in UMT. A laboratory study was conducted in which participants (N = 157) were primed to feel and desire more or less uncertainty about skin cancer and were given the opportunity to search for skin cancer information using the World Wide Web. The results show that desired uncertainty level predicted appraisal intensity, and appraisal intensity predicted information-seeking depth-although the latter relationship was in the opposite direction of what was expected.

Health information seeking and the World Wide Web: an uncertainty management perspective.

Uncertainty management theory was applied in the present study to offer one theoretical explanation for how individuals use the World Wide Web to acquire health information and to help better understand the implications of the Web for information seeking. The diversity of information sources available on the Web and potential to exert some control over the depth and breadth of one's information-acquisition effort is argued to facilitate uncertainty management. A total of 538 respondents completed a questionnaire about their uncertainty related to cancer prevention and information-seeking behavior. Consistent with study predictions, use of the Web for information seeking interacted with respondents' desired level of uncertainty to predict their actual level of uncertainty about cancer prevention. The results offer evidence that respondents who used the Web to search for cancer information were better able than were respondents who did not seek information to achieve a level of uncertainty commensurate with the level of uncertainty they desired.

Perceptions of traditional information sources and use of the world wide web to seek health information: findings from the health information national trends survey.

As medical information becomes increasingly available and individuals take a more active role in managing their personal health, it is essential for scholars to better understand the general public's information-seeking behavior. The study reported here explores the use of the World Wide Web to seek health information in a contemporary information-media environment. Drawing from uses and gratifications theory and the comprehensive model of health information seeking, perceptions of traditional information sources (e.g., mass media, one's health care provider, etc.) are posited to predict use of the Web to seek health information and perceptions of information acquired from searches. Data from the Health Information National Trends Survey (HINTS; N = 3982) were analyzed to test study hypotheses. Trust in information-oriented media, entertainment-oriented media, and one's health care provider all predicted Web use behavior and perceptions. The implications of the findings for research on information seeking and the role of the Web in patient empowerment are discussed.