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

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.

Quality of Life for Women with Human Papillomavirus-induced Lesions

“…27 Thus, the emotional burden is inversely proportional to the knowledge of the infection. 28,31 The present study allows changes in the quality of life of women with HPV infection to be seen and, therefore, enables the management of and intervention in situations that can significantly affect treatment.…”

“…27 Regarding the social relationships changes, although most of the participants in the present study have normal social activities, and the lack of motivation to enjoy social activities and absenteeism at work with risk of layoffs are reported, corroborating with other studies. 28,30,31 The HPV-related stigma added to misinformation leads to isolation through fear of disclosure of the diagnosis and negative self-image compared with other people. 31 Regarding the social changes, similar aspects were revealed in a study developed in Ethiopia, in which the number of days of being absent from work for outpatient follow-up or hospitalization were quantified, with frequent absenteeism threatening the maintenance of employment.…”

“…28,30,31 The HPV-related stigma added to misinformation leads to isolation through fear of disclosure of the diagnosis and negative self-image compared with other people. 31 Regarding the social changes, similar aspects were revealed in a study developed in Ethiopia, in which the number of days of being absent from work for outpatient follow-up or hospitalization were quantified, with frequent absenteeism threatening the maintenance of employment. 30 In this sense, considering the changes related to living with HPV infection, the importance of support networks can be seen.…”

Notification of an abnormal Pap smear result: An intervention study

“…Pap smear result can elicit negative emotions, such as anxiety and fear of cancer, among women (Dominiak-Felden et al, 2013;Oscarsson, 2011;Rask, Oscarsson, Lindell, & Swahnberg, 2016;Rask, Swahnberg, Lindell, & Oscarsson, 2017;Thangarajah et al, 2016). These emotions can be increased by an awareness of HPV as a sexually transmitted infection and add feelings of blame, anger and fears of being stigmatised (Barnack-Tavlaris, Serpico, Ahluwalia, & Ports, 2016;. Women have described a phone call notification or a pre-arranged consultation as a positive tion group (n = 113) were notified of their Pap smear result via a phone call by a trained healthcare provider, while those in the comparison group (n = 122) were notified via a standard letter.…”

“…Previous research shows that notification of an abnormal Pap smear result can elicit negative emotions, such as anxiety and fear of cancer, among women (Dominiak‐Felden et al, ; Oscarsson, ; Rask, Oscarsson, Lindell, & Swahnberg, ; Rask, Swahnberg, Lindell, & Oscarsson, ; Thangarajah et al, ). These emotions can be increased by an awareness of HPV as a sexually transmitted infection and add feelings of blame, anger and fears of being stigmatised (Barnack‐Tavlaris, Serpico, Ahluwalia, & Ports, ; Rask, Swahnberg, et al, ). Women have described a phone call notification or a pre‐arranged consultation as a positive manner of delivering an abnormal Pap smear result, while a written notification was reported as creating feelings of distress and confusion (McCaffery & Irwig, ).…”