“A lot of people didn't have a chance to support us because we never told them” Stigma management, information poverty and HIV/AIDS information/help networks

Because of fears of stigmatization, people with HIV/AIDS (PHAs) may avoid health care and refuse illness-related information and support. However, HIV/AIDS-related information, especially that which is provided by other people, has also been shown to a vital resource for PHAs and their loved ones. This research examines the role of stigmatization in PHAs' and their friends/family members' efforts to establish personal networks for HIV/AIDS-related information and help ("information/help networks"). To investigate this question, I draw upon Goffman's ( 1963 ) stigma management theory and Chatman's ( 1996 ) theory of information poverty. Semi-structured, in-depth interviews were conducted with 114 PHAs, their friends/family members, health care and service providers in three rural regions of Canada. Results revealed that the majority of PHAs and friends/family members had relatively small networks for HIV/AIDS information/help. For many participants, the challenges of living with HIV/AIDS led to changes in their personal networks, and stigmatization playing a significant part in such changes. Participants developed information/help networks in a manner consistent with stigma management theory in their decisions to disclose selectively to others, to avoid the topic in conversation, to obtain information/help at a distance or to acquire information/help without disclosing their HIV status. However, in contrast to Chatman's theory, participants did not wholly avoid information from interpersonal sources nor believe that no one was available to help them. These findings suggest that information behaviour theory may need to evolve in order to account for the complexity of self-protective behaviour.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/78326/1/1450460273_ftp.pd

Coming Out to Doctors, Coming Out to ‘‘Everyone’’: Understanding the Average Sequence of Transgender Identity Disclosures Using Social Media Data

Purpose: Gender transition is a complex life change, and transgender identity disclosures are pivotal moments that delineate the gender transition process. The purpose of this study was to quantify the average sequence in which transgender people disclose their transgender identity to different people in their lives, such as medical professionals, family members, and online networks, and to understand the emotional implications of these disclosures. Methods: We used mixed methods to identify 362 transgender identity disclosure social media posts within 41,066 total posts from 240 Tumblr transition blogs (online spaces in which transgender people document gender transitions). We manually assigned each disclosure post an audience category, and then calculated the average sequence in which people in this sample disclosed their transgender identity to different audiences. Results: Health professionals, such as physicians and therapists, were on average some of the very first people to whom transgender Tumblr bloggers disclosed their transgender identity. Such disclosures were often anxiety provoking and emotionally difficult, whether intentional or involuntary. Next, they often disclosed to friends, followed by close family (e.g., parents and siblings) and then extended family (e.g., grandparents). Mass disclosures to large portions of a person's network, such as on one's Facebook profile, usually came late in the disclosure process. Conclusion: Gender transition is a staged process that includes a series of disclosures to different audiences that follows an average sequence. Because health care providers (e.g., physicians and therapists) who work with transgender patients are often some of the very first people to whom transgender people in our sample disclosed, providers must practice extra sensitivity when responding to such disclosures.National Science Foundation Graduate Research Fellowships Program Grant No. DGE-1321846University of California, Irvine, James Harvey Scholar AwardPeer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/155363/1/trgh.2019.0045.pdfDescription of trgh.2019.0045.pdf : Main articl

A spectrum of approaches to health information interaction: From avoidance to verification

People respond to illness in a range of ways, and take different approaches to engaging with health information throughout the course of their illness. This study describes and explains the variety of approaches to health information interactions made by patients on hemodialysis. Ethnographic observations (156 hours) were conducted in three hemodialysis clinics, and semistructured interviews about health information were held with 28 patients. Demographic data were collected. Data were analyzed qualitatively. We found a spectrum of five approaches to health information: avoiders, who close themselves off from health information; receivers, who encounter information in the dialysis clinic but do not seek it out; askers, who only pose questions about health to their healthcare providers but otherwise do not seek; seekers, who actively look for health information both in and out of the clinic; and verifiers, who seek information and triangulate it among multiple sources. Trust in healthcare providers and coping sociality differed across approaches. The findings indicate that health information should be provided to patients using strategies tailored to their preferences and existing approaches to information interaction.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/156165/2/asi24310_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/156165/1/asi24310.pd

Talking About, Knowing About HIV/AIDS in Canada: A Rural‐Urban Comparison

Purpose: To explore information exchange about HIV/AIDS among people living in rural and urban communities and to assess the value of social capital theory, as well as demographic factors, in predicting community members’ knowledge of HIV/AIDS and their likelihood of having talked about the disease. Method: A random‐digit dial telephone survey was conducted in 3 rural regions and matched urban communities in Canada during 2006 and 2007. A total of 1,919 respondents (response rate: 22.2%) answered questions about their knowledge of and attitudes toward HIV/AIDS, their social networks, whether they were personally acquainted with a person with HIV/AIDS (PHA), and whether they had ever talked to anyone about HIV/AIDS. Findings: Rurality was a significant predictor of HIV/AIDS knowledge and discussion. Even after controlling for factors such as age and level of education, respondents living in rural regions were less knowledgeable about HIV/AIDS and were less likely to have spoken with others about the disease. Social capital theory was not as strongly predictive as expected, although people with more bridging ties in their social networks were more likely to have discussed the disease, as were those who knew a PHA personally. Conclusion: Rural‐dwelling Canadians are less likely than their urban counterparts to be knowledgeable about HIV/AIDS or to talk about it, confirming reports by PHAs that rural communities tend to be silent about the disease. The findings support policy recommendations for HIV education programs in rural areas that encourage discussion about the disease and personal contact with PHAs.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/86990/1/j.1748-0361.2010.00353.x.pd

All in the family: A descriptive analysis of family network change in families managing chronic illness

BackgroundSocial networks can be a source of support, including informational support, in chronic illness management, but can change over time in response to health crises. However, little is known about how families leverage their support networks to manage chronic illness over time—and how these networks may change.MethodsFor 28 families managing either diabetes or HIV, we gathered survey‐based social network data, including network size, exchanges of support, and tie strength, up to 5 times over 2 years. We then used descriptive analysis to examine changes in network size, structure and function (e.g., informational support).FindingsAlthough family networks remained stable in terms of network size and transitivity, these networks experienced regular fluctuations in both tie‐level variables (i.e., tie strength) and density of informational support exchanges.DiscussionObserved changes in these measures indicate that even family support networks are susceptible to change over time, particularly at the tie‐level, indicating a need to expand the way we think of network change beyond whole network measures when looking at small, family networks, especially examining how information exchanges fluctuate over time. Future research should explore tie‐level measures and support exchange networks to understand why networks change over time.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/163486/2/pra2247.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/163486/1/pra2247_am.pd

Health information behavior in families: Supportive or irritating?

We report preliminary results of a mixed methods study of relationships between family‐based information behavior and social support in chronic illness. Twenty‐four participants (12 people with HIV/AIDS (PHAs) and 12 people with diabetes) completed surveys, visualized their family‐based social support networks, and participated in in‐depth, qualitative interviews. Findings revealed that our sample of people with diabetes had significantly larger family support networks than did PHAs. These differences seem linked to greater interpersonal constraints in talking about HIV/AIDS in families. Yet, the two groups did not differ in terms of perceived social support (PSS), frequency of collaborative information behavior (CIB), or use of information obtained collaboratively. However, a surprising relationship between CIB and PSS emerged among diabetics but not PHAs: the greater the frequency of CIB with family members, the less supportive they were perceived to be. This seems rooted in the prevalence of attempted influence and interference by diabetics' family members. Nevertheless, among both PHAs and diabetics, a significant overlap existed between receipt of informational and emotional support. Indeed, information sharing and emotional support could be the same in interactions such as questions of concern, goal attainment, and caring forwards. This study is among the first to document differences in social support and CIB among people with different diseases, pointing to the merit of information services and systems differentiated by disease. The overlap between informational and emotional support suggests the value of organizing, presenting, or rating health information according to emotional valence. Demonstrating that CIB may have negative effects challenges information scientists to reconsider whether receipt of information is always positive. Health information behavior in families therefore appears more complex than has been previously shown.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/90033/1/14504801070_ftp.pd

Health information behavior in families: supportive or irritating?

ABSTRACT We report preliminary results of a mixed methods study of relationships between family-based information behavior and social support in chronic illness. Twenty-four participants (12 people with HIV/AIDS (PHAs) and 12 people with diabetes) completed surveys, visualized their family-based social support networks, and participated in in-depth, qualitative interviews. Findings revealed that our sample of people with diabetes had significantly larger family support networks than did PHAs. These differences seem linked to greater interpersonal constraints in talking about HIV/AIDS in families. Yet, the two groups did not differ in terms of perceived social support (PSS), frequency of collaborative information behavior (CIB), or use of information obtained collaboratively. However, a surprising relationship between CIB and PSS emerged among diabetics but not PHAs: the greater the frequency of CIB with family members, the less supportive they were perceived to be. This seems rooted in the prevalence of attempted influence and interference by diabetics' family members. Nevertheless, among both PHAs and diabetics, a significant overlap existed between receipt of informational and emotional support. Indeed, information sharing and emotional support could be the same in interactions such as questions of concern, goal attainment, and caring forwards. This study is among the first to document differences in social support and CIB among people with different diseases, pointing to the merit of information services and systems differentiated by disease. The overlap between informational and emotional support suggests the value of organizing, presenting, or rating health information according to emotional valence. Demonstrating that CIB may have negative effects challenges information scientists to reconsider whether receipt of information is always positive. Health information behavior in families therefore appears more complex than has been previously shown

Using social media to assess the consumer nutrition environment: comparing Yelp reviews with a direct observation audit instrument for grocery stores

Objective To examine the feasibility of using social media to assess the consumer nutrition environment by comparing sentiment expressed in Yelp reviews with information obtained from a direct observation audit instrument for grocery stores. Design Trained raters used the Nutrition Environment Measures Survey in Stores (NEMS-S) in 100 grocery stores from July 2015 to March 2016. Yelp reviews were available for sixty-nine of these stores and were retrieved in February 2017 using the Yelp Application Program Interface. A sentiment analysis was conducted to quantify the perceptions of the consumer nutrition environment in the review text. Pearson correlation coefficients (ρ) were used to compare NEMS-S scores with Yelp review text on food availability, quality, price and shopping experience. Setting Detroit, Michigan, USA. Participants None. Results Yelp reviews contained more comments about food availability and the overall shopping experience than food price and food quality. Negative sentiment about food prices in Yelp review text and the number of dollar signs on Yelp were positively correlated with observed food prices in stores (ρ=0·413 and 0·462, respectively). Stores with greater food availability were rated as more expensive on Yelp. Other aspects of the food store environment (e.g. overall quality and shopping experience) were captured only in Yelp. Conclusions While Yelp cannot replace in-person audits for collecting detailed information on the availability, quality and cost of specific food items, Yelp holds promise as a cost-effective means to gather information on the overall cost, quality and experience of food stores, which may be relevant for nutrition outcomes

Signal Appropriation of Explicit HIV Status Disclosure Fields in Sex-Social Apps used by Gay and Bisexual Men

HIV status disclosure fields in online sex-social applications ("apps") are designed to help increase awareness, reduce stigma, and promote sexual health. Public disclosure could also help those diagnosed relate to others with similar statuses to feel less isolated. However, in our interview study (n=28) with HIV positive and negative men who have sex with men (MSM), we found some users preferred to keep their status private, especially when disclosure could stigmatise and disadvantage them, or risk revealing their status to someone they knew offline in a different context. How do users manage these tensions between health, stigma, and privacy? We analysed our interview data using signalling theory as a conceptual framework and identify participants developing 'signal appropriation' strategies, helping them manage the disclosure of their HIV status. Additionally, we propose a set of design considerations that explore the use of signals in the design of sensitive disclosure fields