Elsevier

Applied Nursing Research

Volume 30, May 2016, Pages 137-141
Applied Nursing Research

Original Article
“I have human papillomavirus”: An analysis of illness narratives from the Experience Project

https://doi.org/10.1016/j.apnr.2015.08.003Get rights and content

Abstract

Purpose

Human papillomavirus (HPV) is the most common sexually transmitted virus worldwide. Our purpose was to examine people’s experiences with HPV using narratives posted on a website entitled, Experience Project.

Method

We conducted a content analysis of 127 HPV narratives to identify stigma, emotion-focused and problem-focused coping, and misinformation.

Results

Negative self-image was the most commonly identified type of stigma. There were more instances of problem-focused than emotion-focused coping. Sources of confusion were mostly about HPV treatment and side effects/symptoms.

Conclusions

These findings have implications for how nurses and other health professionals can care for individuals living with HPV. Based on these findings, it would be beneficial for clinics/providers to implement on-line forums where myths about HPV can be debunked and accurate information provided. Both patients and the public need to be better informed about HPV, in order to decrease the negative stigma that can create a mental burden for individuals with HPV.

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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      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 stigma related to STIs can hinder the search for treatment and protection methods, in addition to increasing the individual's burden of suffering. It is admitted that individuals with little knowledge feel more stigmatized when they are diagnosed with HPV infection.60 A qualitative study, based on information obtained from a website (Experience Project), showed that the negative perception of one's image was the type of stigma prevalent among people.60

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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.

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