A Quantum of Solace: An Exploratory Mixed Methods Study of Online Support in the Self-Management of Anxiety in HPV Positive Women

The implementation of human papillomavirus (HPV) DNA detection as the primary screening tool for screening and management of cervical intraepithelial neoplasia (CIN) proposed for roll-out in 2019-2020 will diagnose more women as HPV positive than are currently diagnosed with CIN due to the relative differences in prevalence between conditions (Sargent et al. 2008; Peto et al. 2004). At present there is no acceptable treatment for HPV (McRae et al. 2014). Anxiety over positivity (Friedman & Shepeard 2007), stigma (Kim 2012), and uncertainty (Kosenko et al. 2012) may constitute a biographical disruption. The stigmatised nature of HPV mean support from regular channels may be restricted due to fears of social rejection following disclosure (Kosenko et al. 2012; Crandall & Moriarty 1995). Online support might instead be utilised to allow access to disease information and social support.

Methods: The study was a mixed methods study based on the follow-up explanations model, involving the administration of an online survey questionnaire (N = 107). Following descriptive data analysis, individuals were recruited for email interviews to describe their lived experiences of HPV positivity (N = 3). These narratives were then analysed using thematic analysis.

Findings: Women responding to the questionnaire and the interviews reported anxiety over fears of transmission to loved ones. Interview narratives disclosed themes of anxiety caused by the mismanagement of information (too much/too little, conflicting or given at the wrong moment), uncertainty over viral clearance and residual issues of stigma. Women reported the use of online support to exchange information and experiences and provide emotional support.

Conclusions: Both the questionnaire and the interview data indicate that uncertainty, anxiety over cancer development and guilt over transmission constitute a biographical disruption among women aware of their HPV positive status, and that the use of online support may be helpful in managing the uncertainty of HPV positivity.