Original Article“I have human papillomavirus”: An analysis of illness narratives from the Experience Project
Section snippets
Methods
The Experience Project (http://www.experienceproject.com/) is a free website that connects individuals who have shared similar life experiences. The site provides an interactive network of personal stories, confessions, blogs, and groups. One can browse topics or search for key words that will produce personal narratives that individuals can identify with by clicking “me too”. New stories can be created if a topic has not been addressed. All experiences start with “I” statements. Examples
Stigma
We identified 148 instances of stigma among the 127 blogs. The most common type of stigma was negative self-image (n = 65). For example, one individual wrote, “I really feel disgusted of myself. I really hate myself and I can't stop crying. I feel so dirty and lost.” Another wrote, “The stigma of having this ‘thing’ is mind blowing…somehow it makes me think I was ‘dirty’.” The next most common was personalized stigma (n = 39). One example was, “I just don’t think a lot of people would understand my
Discussion
Our analysis of unsolicited, HPV narratives revealed that individuals with HPV experience stigma, turn to the Internet for support, use both emotion- and problem-focused coping strategies, and are confused/misinformed about many aspects of HPV. The most commonly identified type of stigma was negative self-image, followed by personalized stigma, and concerns about disclosure. This is important because previous researchers have found perceived stigma to be associated with maladaptive coping and
Implications and conclusions
Our findings have several practical implications. Given that the Internet provides a source of support for many individuals with HPV, it would be beneficial for nurses and/or other health providers to implement on-line forums where myths can be debunked and accurate information provided. What is needed is more than just an informational website, but rather an interactive on-line community where health professionals respond to individuals’ questions and concerns. Individuals can gain emotional
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Cited by (17)
Stigma and cervical cancer prevention: A scoping review of the U.S. literature
2021, Preventive MedicineCitation Excerpt :Relatively few studies (n = 5) focused on facilitators of stigma (Sandfort and Pleasant, 2009; Hopfer et al., 2017; Hopfer and Clippard, 2011; Dyer, 2010; Sundstrom et al., 2019), which may potentially positively influence health-seeking behaviors such as vaccination or screening. On the other hand, half (n = 7) reported drivers of stigma (Barnack-Tavlaris et al., 2016; Daley et al., 2015, 2010; Perrin et al., 2006; Dyer, 2010; Kahn et al., 2007, 2005), which may lead individuals to avoid receipt of vaccination or screening. In terms of stigma manifestations, eight studies cited stigma practices (Barnack-Tavlaris et al., 2016; Sandfort and Pleasant, 2009; Hopfer and Clippard, 2011; Perrin et al., 2006; Shepherd and Gerend, 2014; Kahn et al., 2007, 2005; Dyer, 2010), and four reported stigma experience (Bertram and Magnussen, 2008; Dyer, 2010; Sundstrom et al., 2019; Daley et al., 2010) (Table 1).
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The authors have no conflicts of interest.
This research was supported by Award Number R25CA093423 from the National Cancer Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.
- 1
Jessica R. Serpico is now a graduate student in the Department of Physical Therapy at Long Island University-Brooklyn, New York.
- 2
Monisha Ahluwalia is now a graduate student in the Health Psychology section of the Psychology Department of the Institute of Psychiatry, Psychology, and Neuroscience at King's College London, United Kingdom.
- 3
Katie A. Ports is now at Division of Violence Prevention, National Center for Injury Prevention and Control, U.S. Centers for Disease Control and Prevention.