Internet use and stigmatized illness

Abstract

People with stigmatized illnesses often avoid seeking health care and education. The internet may be a useful health education and outreach tool for this group. This study examined patterns of internet use for health information among those with and without stigmatized illnesses. A national survey of internet users in the USA was conducted. Respondents who self-reported a stigmatized condition—defined as anxiety, depression, herpes, or urinary incontinence—were compared to respondents who reported having at least one other chronic illness, such as cancer, heart problems, diabetes, and back pain. The analytical sample consisted of 7014 respondents. Cross-sectional associations between stigmatized illness and frequency of internet use for information about health care, use of the internet for communication about health, changes in health care utilization after internet use, and satisfaction with the internet were determined. After controlling for a number of potential confounders, those with stigmatized illnesses were significantly more likely to have used the internet for health information, to have communicated with clinicians about their condition using the internet, and to have increased utilization of health care based on information found on the internet, than those with non-stigmatized conditions. Length of time spent online, frequency of internet use, satisfaction with health information found on the internet, and discussion of internet findings with health care providers did not significantly differ between the two groups. Results from this survey suggest that the internet may be a valuable health communication and education tool for populations who are affected by stigmatized illnesses.

Introduction

Stigma can lead to discrimination, ostracism, or persecution, and may cause feelings of embarrassment or humiliation in the stigmatized individual (Gilbert, 2001). Consequently, people often conceal stigmatized health conditions, or avoid situations that may reveal these conditions. Efforts to hide stigmatized illnesses often lead to delays in seeking health care and information (Link, Cullen, Mirotznik, & Struening, 1992). This problem has been documented in connection with sexually transmitted infections (STIs) (Barth, Cook, Downs, Switzer, & Fischhoff, 2002; Cunningham, Tschann, Gurvey, Fortenberry, & Ellen, 2002; Duncan, Hart, Scoular, & Bigrigg, 2001; Fortenberry et al., 2002), mental illness (Blair & Ramones, 1996; Cooper-Patrick et al., 1997; Crisp, Gelder, Rix, Meltzer, & Rowlands, 2000; Davies, 2000; Goldstein, 2002; Link et al., 1992; Sirey et al., 2001), and urinary incontinence (MacKay, 2001; Paterson, 2000). The consequences of an untreated illness can reach beyond the individual. Untreated STIs not only have long-term adverse health effects for the infected individual, but also present a risk of infection for others. Untreated depression can result in lost work productivity and interpersonal problems, both of which have been shown to improve with treatment (Miranda et al., 2003; Ruo et al., 2003; Schoenbaum et al., 2002; Stewart, Ricci, Chee, Hahn, & Morganstein, 2003; Wells et al., 2000). As with all treatable or preventable illnesses, delays in or lack of treatment and prevention for stigmatized illnesses results in unnecessary suffering, lost productivity, and sub-optimal use of health care resources.

Reaching people with stigmatized illnesses poses a unique challenge. To contact this group of people it is necessary to surmount people's tendency to hide stigmatized conditions. In light of the reluctance of those affected by stigmatized illnesses to seek treatment or to ask health professionals for health information, the internet may prove to be a useful tool for patient education and public health outreach. The internet is widely accessible and frequently searched for health information; recent estimates indicate that around 20% of US adults use the internet for health information (Baker, Wagner, Singer, & Bundorf, 2003). Another report found that among those who do not use the internet, 60% are aware of publicly available internet access points within their community (Lenhart et al., 2003). Although concerns about online privacy have at times been raised, the internet can be searched anonymously and informally, particularly if searching from a home or other private location.

The informality of the internet diminishes the extent to which a person has to self-identify as having a stigmatized illness, before looking for information. For many people, the label “mentally ill” is implicit in a visit to a psychiatrist or mental health clinic. Online information, however, can be casually perused without classifying oneself as having a mental (or other) illness. This informality may make searching for health information online less intimidating than seeking advice from a health professional. In some situations, such as psychotherapy, treatments can also be found online.

Those with stigmatized illnesses may realize significant benefits from using the internet for health information. The ability of the internet to increase self-reported knowledge about health, and to influence health care use has been previously documented (Baker et al., 2003). Prior studies have analyzed patterns of internet use among various populations (Diaz et al., 2002; Epstein, Rosenberg, Grant, & Hemenway, 2002; Gould, Munfakh, Lubell, Kleinman, & Parker, 2002; Houston, Cooper, & Ford, 2002; Nicholson, Grason, & Powe, 2003; Peterson, 2003). However, there have been no studies to date that specifically examine internet use among people with stigmatized illnesses. Because of its distinct needs and the potential for benefits from internet use, this group warrants further investigation.

We analyzed a large, nationally representative survey of internet use for health information to examine patterns of internet use among those with and without a stigmatized illness. Based on literature (Barth et al., 2002; Blair & Ramones, 1996; Crisp et al., 2000; Cunningham et al., 2002; Davies, 2000; Duncan et al., 2001; Fortenberry et al., 2002; Goldstein, 2002; Link et al., 1992; MacKay, 2001; Paterson, 2000; Sirey et al., 2001), and constraints with our data, we identified four stigmatized conditions: anxiety, depression, herpes, and urinary incontinence and compared this group to people with one or more non-stigmatized chronic illnesses.

We hypothesized that people with a stigmatized illness would be more likely to use the internet for information and communication regarding health care than people with non-stigmatized illnesses. We then explored internet use in detail by assessing the frequency of using the internet for health information, frequency of using the internet to communicate about health, satisfaction with internet use, time spent on the internet, and self-reported changes in health care utilization as a result of internet use, among those with and without stigmatized illnesses. Because people with stigmatized conditions often avoid care and do not know about available treatments, we hypothesized that people with a stigmatized condition who searched the internet would be more likely to report that the internet increased their use of medical services than people without a stigmatized condition.