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Being diagnosed with a sexually transmitted infection (STI): sources of support for young women a

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Leah East , Debra Jackson , Louise O'Brien & Kath Peters a

Deakin University, Australia

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University of Technology, Sydney, Australia

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University of Newcastle, Australia

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University of Western Sydney, Australia Published online: 06 Jul 2015.

Click for updates To cite this article: Leah East, Debra Jackson, Louise O'Brien & Kath Peters (2015): Being diagnosed with a sexually transmitted infection (STI): sources of support for young women, Contemporary Nurse, DOI: 10.1080/10376178.2015.1013427 To link to this article: http://dx.doi.org/10.1080/10376178.2015.1013427

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Contemporary Nurse, 2015 http://dx.doi.org/10.1080/10376178.2015.1013427

Being diagnosed with a sexually transmitted infection (STI): sources of support for young women Leah Easta*, Debra Jacksonb, Louise O’Brienc and Kath Petersd a

Deakin University, Australia; bUniversity of Technology, Sydney, Australia; cUniversity of Newcastle, Australia; dUniversity of Western Sydney, Australia

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(Received 28 March 2014; accepted 31 December 2014) Background: Sexually transmitted infections (STIs) are prevalent throughout the world with the rate of these infections increasing on a daily basis. STI acquisition has the ability to cause personal adversity and elicit feelings of stigma and shame. Aim: The aim of this paper is to report on the sources of support young women who acquired STIs drew on to overcome their associated adversity. Methods: This study utilised a feminist qualitative methodology. Findings: Findings revealed that the women drew on both personal and anonymous sources of support. Conclusion: Nurses and other health-care professionals need to be equipped with knowledge and strategies to promote personal wellbeing and minimise the adversity felt among people having acquired these infections. Keywords: nurse; sexual health; sexually transmitted infections; healthcare; women’s health

The incidence of sexually transmitted infection (STIs) continues to increase throughout the world with almost one million people acquiring an STI on a daily basis (World Health Organisation [WHO], 2007). Although individuals may perceive themselves as invulnerable to these types of infections (East, Jackson, O’Brien, & Peters, 2007; Wolfers, de Zwart, & Kok, 2011), STIs can affect any sexually active person regardless of gender, class or ethnicity, and can cause both physical and psychosocial adversity (Pirotta et al., 2009; WHO, 2007). STIs are the leading cause of preventable infertility among women throughout the world, are capable of causing birth defects in neonates, and increase the risk of HIV transmission between sexual partners (Chan, 2006; Pellati et al., 2008; WHO, 2007). To reduce the incidence of STIs and the associated adverse outcomes, effective treatment, education and support need to be provided to those who acquire an STI. However, research focused on STIs has suggested that although effective counselling and interventions have the ability to curb the incidence of STIs (US Preventive Services Task Force, 2008), the stigma, shame and embarrassment associated with these infections can hinder individuals in seeking appropriate care, treatment and support (Royer & Zahner, 2009). Moreover, the perceived lack of confidentiality that exists between health-care professionals and individuals seeking treatment

*Corresponding author. Email: [email protected] © 2015 Taylor & Francis

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for STIs can further impede STI assessment and treatment (Royer & Zahner, 2009; Shoveller et al., 2009). Even when perceived barriers to treatment are overcome, appropriate STI management may not be provided (Kodama, Nakase, Tsuda, Yorifuji, & Doi, 2010). STI management guidelines may not be followed by health-care professionals (Department of Health, 2009), and individuals may experience negative health-care encounters when seeking STI treatment and care (Balfe & Brugha, 2010; East, Jackson, O’Brien, & Peters, 2011). Nurses working with people diagnosed with an STI are in a pivotal position to not only provide education and support but also to facilitate positive wellbeing and reduce the adversity associated with the diagnosis. The aim of this paper is to illuminate the support networks young women drew on to facilitate overcoming the adversity they felt when diagnosed with an STI. The findings presented in this paper originate from a larger study focused on young women’s experiences of having an STI(s). Methods This study utilised a feminist qualitative methodology. This approach was chosen for this research to highlight the social and gender constructs such as the typical stereotypes that have been associated with women and STIs and to gain in-depth insight into the women’s experiences. The study was approved by the relevant human ethics institutional board [University of Western Sydney’s Human Research Ethics Committee]. Participants Ten women who had previous diagnoses of chlamydia, human papillomavirus (HPV) and/or genital herpes participated in this study. Participants were required to be able to converse in English, be willing to participate in either a synchronised online or face-to-face interview with the chief investigator, and have previously been diagnosed with STI(s) that was/were acquired exclusively through heterosexual intercourse. For the purpose of this study HIV/ AIDS and hepatitis were excluded from the inclusion criteria as these infections are not contracted exclusively through sexual intercourse. The inclusion criteria also stipulated that potential participants were eligible if they had acquired an STI(s) between the ages of 18 and 30 years as this group has a particularly high rate of STIs. Potential participants were recruited via advertisement in sexual health clinics, STI online forums, university campuses and through the media. Data collection and analysis All participants from this study chose to participate via synchronised online interviews using instant messaging software rather than face-to-face interviews. This choice was attributed to distance and the anonymity afforded by this mode of communication. On completion of interviews, transcripts were reviewed for themes and analysed using Anderson and Jack’s (1991) feminist techniques and analysis. Anderson and Jack’s analytical techniques involve firstly becoming engaged with participant’s stories through listening or in this case continuous reading of the women’s transcripts. Once engaged with participant’s stories, the researchers analysed the data through exploring the participant’s personal values and their values within the context of societal norms. In addition, the researchers analysed how these values and associated perceptions shaped the participants’ stories of STI diagnoses and influenced the networks they drew on for support. Two dominant themes emerged from the transcripts including ‘Reaching out’ and ‘Seeking support anonymously’ which are discussed below.

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Findings

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Reaching out Findings from this study revealed the support networks these women drew on to reach out for support in both being diagnosed with an STI and living with an incurable STI such as genital herpes. By drawing on additional sources of support, the women’s experiences were made more bearable. The women drew on the support of family, friends, partners and other individuals who had experienced having an STI. In doing so, the women felt that they were not entirely alone and found they were still accepted by these individuals despite having an STI. Cathy stated ‘ … all the girls I have told have been close friends and they have been really supportive.’ Although some of the women did experience stigma from friends and family in the past (East, Jackson, O’Brien & Peters, 2012), the benefits of gaining support from friends, family and other support networks was immense. They revealed having an STI to those closest to them and to those they trusted. As stated by Lilly: Yes I was able to tell my close circle of friends … one in particular took me to the doctor so she knew. My sister and another close friend were the only girls I could tell as I feel that I can trust them and I know that they wouldn’t judge me … even if they were the same girls always telling me to protect myself!

Rita found solace in telling her mother about her diagnosis. Rita felt her mother did not negatively judge her and provided her with the emotional support she needed. By disclosing having an STI to her mother, Rita felt that she could overcome the anguish she felt: My mum was a saviour. I found the warts late one night and went to the GP [general practitioner] the next morning; after the treatment etc I rang my mum bawling my eyes out and told her I had an STI. Mum was great, she reassured me …

Likewise, Charlotte found comfort and received support from both her mother and friends. Although Charlotte initially feared condemnation from them, after disclosing her diagnosis to her mother and friends, her burden of shame and distress was reduced. Charlotte commented: It took me ages, 2–3 months before I was able to tell my mum & friends, as I was ashamed. Funny thing is they were all a fantastic support when I finally spat it out!

Receiving support from friends and family when faced with adversity associated with their STI diagnosis helped these women cope with their negative experiences and gave them strength to overcome their pain. A further strategy they used was drawing on positive emotions to make a negative situation more bearable, and this is revealed in Sam’s statement; ‘ … yeah my two best friends they helped lots I joke about it with them and stuff … ’. Through the support of friends, Sam was able to find comfort and use the positive emotion of humour to cope with having an STI. Similarly, Cathy’s story revealed how having support from friends facilitated these women in drawing on their strengths in the face of adversity. Cathy stated: I was all alone in xxx (name of town) … I had no friends and no family. I spent most of my days alone or working. I tried dealing with it on my own and I realised that problems are easier when u [you] can have advice from other people. After about a month I told my best friend. It was a big relief that I had someone to talk to, that I had support, that someone accepted me no matter what. And telling people now it makes me see that people do still accept me for who I am and yeah in a way gives me the strength to carry on.

Although some of the women had experienced rejection from partners in the past, others spoke of the comfort and support they found in some male partners when they had disclosed having an STI

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to them. Cathy found comfort in a partner as she felt he understood the herpes infection, she stated ‘he knew from the beginning that I had HSV2 and he didn’t care. He understood about HSV as he is a pharmacist.’ Rita found comfort in the fact that although she had an STI, this did not change her relationships nor her partners’ affections toward her: ‘my partners were fine, neither of them asked any questions and both assured me that it didn’t change anything.’ Lilly had also found solace and support in her male partner at the time of the study. She explained that having a supportive partner made a difference to how she has coped with having herpes and how she felt about herself. Lilly explained:

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Well it’s been a few months now and he has been so supportive and understanding I couldn’t have asked for anything more. … I must say that having a supportive partner has helped immensely and I hope that anyone else that experiences GH [genital herpes] has the same amount of acceptance and support that I have experienced. It’s invaluable. I guess it’s helped to have talked about it in recent weeks with my doctor and my partner … He is really supportive and always makes me feel loved regardless of GH [genital herpes].

Though some of the women spoke of the support they received from others, they did not feel that these individuals fully understood the experiences of having STIs. As stated by Lilly: ‘honestly my friends and particularly my sister made this experience so much more bearable … with their total support … even with this though, I still felt so alone and angry … ’.Similarly, although Bree’s family and friends had provided her with support, she felt that they did not completely understand what she had experienced as a result of having genital herpes. Although Bree had tried to make them understand, they had not experienced it so they could not reach full understanding. Bree asserted: Yes [told someone she had an STI], my mum was with me at the doctor (because I was incapable of driving), and I told her as we left, then I told my sister and cousin who were at home at the time and wanted to know why I was so sick. I have also opened up to quite a few of my friends, and they have all been really supportive. Most of them were clueless as to what HSV was and how it affected me. … They were a little shocked … like how could you get this? I told them so that I could gauge their responses, and let them know that it is something you need to be aware of and for them to understand it. … Well they understand the virus, how it is contracted, what the symptoms are, but really understand … no, but it isn’t their fault. They are supportive.

Like Bree, Melinda felt that only through actually experiencing having an STI can individuals completely comprehend what it is like. She stated ‘you can only understand if you experience it yourself – and I know that from being a “before” person and an “after” person.’ Seeking support anonymously Although these women reached out to those closest to them for support, as stated above, some participant’s felt that the individuals they disclosed having an STI to did not fully understand what they had and were experiencing. It is for this reason that several of the women used internet support groups to draw on support. Sam had not only received support from this medium, she had also struck up friendships with others from this group, ‘and two people online [who I have become friends with] … I’m going to meet her in a fortnight when I’m over (in other woman’s town) … [it is] good to talk to ppl [people] with the same thing. … Yeah they understand the ups and downs like no one else does.’ Charlotte also commented on how she had developed many friendships via this avenue. Charlotte stated that support websites had put her in contact with others who had experienced having an STI, and were also a source of information. Although, as Charlotte pointed out, these support websites are not well advertised, so many individuals may

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be unaware of the availability of this support, hence many women may be suffering in silence. In reflecting on the role of the website in her life, Charlotte asserted: As a source of information & just as a reminder you are not alone in this. We actually feel a kind of comradeship & there are definitely some classic characters so I’ve met new friends & had some good times too. Hearing different stories has taught me some stuff I would not have found/learnt through any other avenue. The only disappointment has been the lack of numbers & also the lack of media support in regard to the fact that these services are available.

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A further benefit of these internet support groups was that it allowed the women to remain anonymous if they wanted to. Melinda had not disclosed having an STI to anyone other than her treating physicians, and anonymously on the support group’s website. Like Charlotte, she found this avenue an excellent source of information as well as support: Only [told] the doctors - and other people with herpes. I joined the site … ages ago. … I think that getting in contact with others in the same boat is the best thing you can do. … It puts you in contact with others who have experienced exactly what you have. Also, herpes is something that a lot of people keep to themselves - and so it is a good, anonymous way to get any questions answered - and get advice about who’s a good practitioner – what’s a good medicine, etc.

This medium also benefited Lilly. She gained support and understanding from others and did not fear being stigmatised and judged because of the anonymity this medium provided. Lilly also found the availability of dating options for people with herpes an excellent support option: The only other support I accessed was an online chat group … I went online and read other peoples experiences and expressed my own under a pseudonym and had really supportive feedback from others who were experiencing the same thing. They even have dating services for people with herpes so you don’t have to go through the anxiety of telling a new partner or fearing rejection …

Discussion Although some of the women in this study had not revealed having an STI to anyone, some had disclosed to significant others as a way of seeking strength and support. Sharing and speaking of a secret to a supportive and understanding individual can promote emotional healing and aid in the dissipation of shame (Estés, 1992; Lewis, 1992; Tangney & Dearing, 2002). For the women in this study, reaching out to others for support and disclosing their burdensome secret of having an STI was the beginning of a healing process. The women relied on close friends, family and others with whom they could share their experiences. Although the women were initially anxious about disclosing their STI to others, due to fear of rejection or attracting negativity, most of them needed to share their experiences in a safe way in order to cope and reduce the enormity of their burden. Further to this, disclosing to trusted confidants, including in one case, the male partner Lilly was involved with at the time of the study, assisted in the reaffirming of their personal identities. Although previous research has identified disclosing an STI to others can aid in gaining support and the restoration of perceived moral worth (see, for example, Duncan, Hart, Scoular, & Bigrigg, 2001; Lee & Craft, 2002; Nack, 2002), a new finding of this study is the value some of the women found from participating in online support groups for people with STIs. Internet support groups are becoming increasingly common, and have the benefit of negating judgements that can occur within face-to-face interactions (King & Moreggi, 2007). Online support and self-help groups function for individuals with a similar attribute to share their stories and gain

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support from others, which can assist in learning about and coping with their condition (Colón & Friedman, 2003; King & Moreggi, 2007). STI support groups provide support, advice, information and confidants to individuals in time of need (Inhorn, 1998). These groups are particularly useful for individuals who possess a stigmatising condition such as STIs, as they have the ability to aid in the normalisation and acceptance of conditions (McKenna & Bargh, 1998), which is vital since perceived stigma can lead to isolation and an inability to seek or gain support, particularly among women (Pitts, Bowman, & McMaster, 1995). Further, through relating to others with the same stigma, and being accepted within the group, self-acceptance and empowerment can occur (Gladding, 2008; King & Moreggi, 2007). Online support groups also have the potential to reach individuals that are geographically isolated and otherwise may lack access to other sources of support, and provides an alternative to people that may not be able to attend face-to-face support groups due to limitations arising from treatment or disease (Vilhauer, 2009; White & Dorman, 2001). The perceived anonymity offered by these online forums provides the opportunity for people to share their story in a supportive environment (without fear of retribution) which has been found to be a cathartic experience among people living with differing conditions (see, for example, Evans, Donelle, & HumeLoveland, 2012; Vilhauer, 2009; Wood & Wood, 2009). Further, through sharing personal stories and the associated cathartic effects, provides the opportunity for personal reflection and healing to occur, which in turn has the ability to enhance personal resilience (East, Jackson, O’Brien, & Peters, 2010). STI support groups can be the foundation of supportive relationships (Colón & Friedman, 2003). The participants who engaged with others in the online groups found comfort in the fact that others had shared and understood their experience, had accepted having an STI, and were coping and managing successfully. Many of the women expressed that discussing their experience with individuals who were also living with an STI was therapeutic. Likewise, among a sample of individuals living with genital herpes, being a member of a genital herpes self-help group, aided in the normalisation of genital herpes and the confirmation of personal identity (Lee & Craft, 2002). Similarly, among HIV-positive women it was found that support groups were a source of comfort, information, a place to meet other women facing similar challenges, reduced felt isolation through establishing connection to others (Doyal & Anderson, 2005), were a place to gain supportive relationships, and aided in coping with the virus (Lather & Smithies, 1997). Having this form of support network was greatly valued by the women in this current study, and may be an important component in coming to terms with living with an STI, particularly for women. This is supported by research indicating that more HIV-positive women than men draw on support groups and seek social contact with individuals also living with HIV (Thorpe, McDonald, & Grierson, 2007). However, online support groups are not without disadvantages. Research has found that participation in these groups may elicit further concerns about particular conditions; participants may be perceived as responding to others inappropriately which may cause offence, and, if the support group is an open forum, issues of privacy can arise (Malik & Coulson, 2010). Therefore, caution should be taken when considering referral to online support groups, clients’ personal circumstances should be considered prior to referral and if utilised, assurance of moderation of the forum and professionalism within the context of privacy, respect and confidentiality should be provided. Conclusion Many women in the current study acknowledged the benefits of participating in online forums for persons who experience an STI. In providing care to women with these infections, health-care

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professionals could provide information and encourage contact with these forums. Having access to this information could help enable women to gain support from people who have experienced similar adversity (whilst remaining anonymous), which has the capacity to enhance wellbeing. This is important because the connection to others that have shared similar experiences has the potential to reinforce to these women that they are no different from others within society, therefore potentially reducing stigma and helping women to move on positively with their lives.

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Being diagnosed with a sexually transmitted infection (STI): sources of support for young women.

Sexually transmitted infections (STIs) are prevalent throughout the world with the rate of these infections increasing on a daily basis. STI acquisiti...
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