Previvorship Posting: Why Breast Cancer Previvors Share Their Stories on Social Media.

Research on previvors, individuals with a genetic predisposition to develop hereditary breast and ovarian cancer but who have not yet been diagnosed with breast or other cancers, examines online information gathering and community support to alleviate uncertainty. However, research exploring online content published by previvors themselves is limited. We examined content published to Instagram and TikTok to explore how breast cancer previvors discussed their lived experience which included, but was not limited to, genetic testing, diagnosis with a BRCA1/2 pathogenic (i.e. risk-increasing) variant, the decision to undergo preventative measures like surgery and/or reconstruction, and how they cope after diagnosis and surgical procedures. In the findings, we explicate how many previvors feel a responsibility to share their authentic experience on social media in order to help others and mitigate their own feelings of uncertainty. This study offers a snapshot of how women are sharing breast cancer previvorship and building social connections with each other online.

Family Sense-Making After a Down Syndrome Diagnosis.

The script of parenting shifts when parents learn of their child's Down syndrome diagnosis. To build a theory of the diagnostic experience and early family sense-making process, we interviewed 33 parents and nine grandparents living in the United States who learned prenatally or neonatally of their child's diagnosis. The core category of rescuing hope for the future encompassed the social process of sense-making over time as parents managed their sorrow, shock, and grief and amassed meaningful messages that anchored them as they looked toward the future. Application of the theory to practice underscores the import of early professional support offered to parents at key points in the sense-making process: Early as they disclose the news of the diagnosis to family and friends, and later close friends and kin assimilate meaningful messages about what the diagnosis means as they recalibrate expectations for a hopeful future.

Business and Breakthrough: Framing (Expanded) Genetic Carrier Screening for the Public.

A growing body of research has given attention to issues surrounding genetic testing, including expanded carrier screening (ECS), an elective medical test that allows planning or expecting parents to consider the potential occurrence of genetic diseases and disorders in their children. These studies have noted the role of the mass media in driving public perceptions about such testing, giving particular attention to ways in which coverage of genetics and genetic testing broadly may drive public attitudes and choices concerning the morality, legality, ethics, and parental well-being involved in genetic technologies. However, few studies have explored how mass media are covering the newer test, ECS. Drawing on health-related framing studies that have shown in varying degrees the impact particular frames such as gain/loss and thematic/episodic can have on the public, this study examines the frame selection employed by online media in its coverage of ECS. This analysis-combined with an analysis of the sources and topics used in such coverage and how they relate to selected frames-helps to clarify how mass media are covering an increasingly important medical test and offers considerations of how such coverage may inform mass media scholarship as well as health-related practices.

#Stupidcancer: Exploring a Typology of Social Support and the Role of Emotional Expression in a Social Media Community.

Social network sites (SNSs) like Twitter continue to attract users, many of whom turn to these spaces for social support for serious illnesses like cancer. Building on literature that explored the functionality of online spaces for health-related social support, we propose a typology that situates this type of support in an SNS-based open cancer community based on the type (informational or emotional) and the direction (expression or reception) of support. A content analysis applied the typology to a 2-year span of Twitter messages using the popular hashtag "#stupidcancer." Given that emotions form the basis for much of human communication and behavior, including aspects of social support, this content analysis also examined the relationship between emotional expression and online social support in tweets about cancer. Furthermore, this study looked at the various ways in which Twitter allows for message sharing across a user's entire network (not just among the cancer community). This work thus begins to lay the conceptual and empirical groundwork for future research testing the effects of various types of social support in open, interactive online cancer communities.

"Where do I go? Who do I go to?": BRCA Previvors, genetic counselors and family planning.

Objective: We sought to understand BRCA previvors' perceptions of communication with genetic counselors and other healthcare providers. Methods: We conducted 16 qualitative interviews and utilized thematic analysis to develop patterns present in the narratives of previvors. Results: Interviews with previvors suggest genetic counselors and other providers often make assumptions about previvors' family planning and treatment needs based on perceived gender, age, and sexual orientation. Conclusion: BRCA patients require individualized attention when planning for their future and making healthcare decisions and we argue that implementing patient-centered care practices into the communication process can provide a higher quality of care. Innovation: This study offers an innovative lens through which scholars and healthcare providers may examine the experiences of BRCA previvors as they seek adequate care. Asking previvors to explain their perceptions of conversations with genetic counselors and healthcare providers offers insight into the communicative process of seeking care rather than the health outcomes of the care itself. Our findings suggest biases among providers related to gender, age, and sexual orientation are concerning elements of family planning communication that potentially interrupt previvors' abilities to express their care needs in a safe environment. We argue for an increased awareness of, and advocacy for, more inclusive conversations regarding treatment and family planning decisions.

Journalism as health education: media coverage of a nonbranded pharma web site.

OBJECTIVE: As healthcare consumers increasingly use the Internet as a source for health information, direct-to-consumer (DTC) prescription drug advertising online merits additional attention. The purpose of this research was to investigate media coverage of the joint marketing program linking the movie Happy Feet and the nonbranded disease education Web site FluFacts-a resource from Tamiflu flu treatment manufacturer Roche Laboratories Inc. MATERIALS AND METHODS: Twenty-nine articles (n = 29) were found covering the Happy Feet-FluFacts marketing campaign. A coding guide was developed to assess elements of the articles, including those common in the sample and information that ideally would be included in these articles. Two coders independently coded the articles, achieving intercoder agreement of κ = 0.98 before resolving disagreements to arrive at a final dataset. RESULTS: The majority of articles reported that Roche operated FluFacts (51.7%) and mentioned the product Tamiflu (58.6%). Almost half (48.3%) reported FluFacts was an educational resource; yet, no articles mentioned other antiviral medications or nonmedical options for preventing the flu. Almost a quarter of the articles (24.1%) provided a call to action-telling readers to visit FluFacts or providing a link for them to do so. CONCLUSIONS: Findings suggest that journalists' coverage of this novel campaign-likely one of the goals of the campaign-helped spread the message of the Happy Feet-FluFacts relationship, often omitting other useful health information. Additional research is needed to better understand online DTC campaigns and how consumers react to these campaigns and resulting media coverage and to inform the policymakers' decisions regarding DTC advertising online.

Addressing anemia among women in India-an informed intervention using Facebook Ad Manager.

BACKGROUND: Women in India continue to have high rates of anemia, especially in critical periods of adolescence and pregnancy. Anemia persists despite decades of government programs aimed at combatting anemia, including through the provision of iron folic acid tablets (IFA). With growing access to mobile phones and social media, even among women, mobile interventions hold potential for influencing knowledge and behaviors. Social media consumption, including on Facebook, is high in India. However, little research has explored if women can be reached with health messages using social media, if data can be collected through this mechanism, and if interventions using social media impact knowledge and behaviors surrounding important health issues such as anemia. The aims of this study were to test an advertising campaign on Facebook about anemia and IFA to women, collect data through social media, and measure its impact. METHODS: A baseline survey and two follow-up surveys were sent to women via Facebook in 2019 in two states of India: Madhya Pradesh and Uttar Pradesh. Between each round of data collection, a set of advertisements based on gaps in knowledge and practices identified in the baseline on anemia and IFA were delivered to more than 3 million women on Facebook. Using this data, we analyze current knowledge and behaviors around anemia and IFA and look at differences by socio-demographics including age, marital status, and pregnancy. Using logistic regression models, we then look for evidence of a significant change in knowledge and behaviors between rounds of data collection. RESULTS: We find that while general knowledge about anemia was high, especially related to its importance in pregnancy, misperceptions persist, such as that it makes babies large and delivery difficult. Only about 15% of the population was currently taking IFA, although nearly 50% noted that they had at some point. Younger women had lower levels of knowledge and practices. Findings about the impact of the Ad campaigns were mixed, with some indicators changing in positive and some in negative directions and no clear trend between surveys. Two indicators that were of high focus in the Ad campaigns changed in the desired direction after both ad campaigns (iron can make labor/delivery difficult and iron supplements are only for women who have anemia). CONCLUSIONS: Overall, this study shows that a social media campaign about anemia has the potential to reach a large number of women in India, including young women, who are hard to reach if they are not in school or currently pregnant and seeing a physician. This study shows that it is possible to collect data from women through social media and measure the impact of an intervention. More research is needed to know if social media is an effective approach to actually change attitudes and behaviors related to anemia, or other important health concerns.

Enemies and friends in high-tech places: the development and validation of the Online Social Experiences Measure.

BACKGROUND: Interpersonal positivity and negativity are separable dimensions both recognized as having important effects on health. Though online social interactions and research examining them are increasingly common, no validated instrument has heretofore been developed to examine social support and social negativity specifically in online contexts. The present studies describe the development and validation of the Online Social Experiences Measure (OSEM) to allow for assessment of online social positivity and negativity simultaneously. METHODS AND RESULTS: In Study I, responses to a potential item pool were collected from participants (N = 557), who were then subdivided into two groups for the purposes of cross-validation via exploratory and confirmatory factor analyses. Results suggested the emergence of two factors: online social support (OSEM+ subscale) and online social negativity (OSEM- subscale). Across Studies I and II (N = 139), the OSEM showed good convergent and discriminant validity, and both subscales had high internal consistency. Study II included an ambulatory cardiovascular assessment and found the OSEM- subscale to be predictive of elevated diastolic blood pressure and heart rate. The OSEM+ subscale was predictive of more favorable cardiovascular readings for some types of participants (e.g. those with a greater number of online-only social ties). CONCLUSIONS: Overall, results suggest online social positivity and negativity may have implications for physical health, and that the OSEM may be a useful tool in understanding online social processes.

Colorectal cancer prevention and intentions to use low-dose aspirin: A survey of 1000 U.S. adults aged 40-65.

OBJECTIVE: The Translating Research into Action (TRIA) study was initiated to gather dissemination information on emerging cancer control recommendations. Daily, low-dose aspirin has been identified as a promising means of preventing colorectal cancer, and stakeholders are already calling for research to facilitate dissemination. Thus, the current study sought to identify factors related to intention to use aspirin for colorectal cancer prevention. METHODS: In April 2014, U.S. adults aged 40-65 (N=1000) were recruited to participate in a survey grounded in the health belief model. RESULTS: Older, Black males were more likely to intend to use low-dose aspirin to prevent colorectal cancer. Smokers, and those with a history of polyps, were also more receptive to initiating daily, low-dose aspirin use. Five psychosocial factors were related to intention including self-efficacy, response efficacy, perceived barriers, perceived susceptibility to colorectal cancer, and cancer information overload. CONCLUSION: Initial campaigns/interventions designed to increase daily, low-dose aspirin for colorectal cancer prevention may be more effective if they target receptive populations (older, Black males) using messages informed by the health belief model.

Long-term health effects among testicular cancer survivors.

PURPOSE: Testicular cancer is diagnosed at a young age and survival rates are high; thus, the long-term effects of cancer treatment need to be assessed. Our objectives are to estimate the incidence rates and determinants of late effects in testicular cancer survivors. METHODS: We conducted a population-based cohort study of testicular cancer survivors, diagnosed 1991-2007, followed up for a median of 10 years. We identified 785 testicular cancer patients who survived ≥5 years and 3323 men free of cancer for the comparison group. Multivariate Cox regression analysis was used to compare the hazard ratio between the cases and the comparison group and for internal analysis among case patients. RESULTS: Testicular cancer survivors experienced a 24 % increase in risk of long-term health effects >5 years after diagnosis. The overall incidence rate of late effects among testicular cancer survivors was 66.3 per 1000 person years. Higher risks were observed among testicular cancer survivors for hypercholesterolemia, infertility, and orchitis. Chemotherapy and retroperitoneal lymph node dissection appeared to increase the risk of late effects. Being obese prior to cancer diagnosis appeared to be the strongest factor associated with late effects. CONCLUSIONS: Testicular cancer survivors were more likely to develop chronic health conditions when compared to cancer-free men. IMPLICATIONS FOR CANCER SURVIVORS: While the late effects risk was increased among testicular cancer survivors, the incidence rates of late effects after cancer diagnosis was fairly low.

News and the overloaded consumer: factors influencing information overload among news consumers.

News producers continue to increase their volume of production and delivery platforms in an effort to reach and maintain news consumers. However, consumers may not necessarily find more news desirable. Previous studies have suggested that information surplus can lead to negative outcomes for consumers, but research of outcomes related to news production and consumption has been scant. This study explores novel areas of news surplus and overload, empirically examining factors associated with the degree of perceived overload across a broad spectrum of news delivery platforms. The findings reveal that the majority of today's news consumers feel overloaded with the amount of news they are confronted with. Gender, news interest, and the use of specific news platforms and outlets predict the degree of that overload. News access through platforms and outlets such as computers, e-readers, and Facebook is positively associated with overload, whereas other platforms such as television and the iPhone are negatively associated with overload. Implications for media psychology and news consumption are discussed.