Coping strategies and behavioural changes following a genital herpes diagnosis among an urban sample of underserved Midwestern women

Settings

From October 2009 to June 2010, women screening positive for HSV-2 were recruited through two different venues: an STD clinic (Bell Flower Clinic) and the Indianapolis Community Court. Two of the most common charges among women at community court include prostitution and public intoxication. Because of the STI-risk associated with commercial sex and substance abuse, particular outreach efforts have been made to increase access to STI care for this population. ¹⁸ A few women had previously experienced HSV-2 symptoms, such as blisters or itching, but the majority of women were asymptomatic prior to testing. Some women developed HSV-2 symptoms post-diagnosis.

Recruitment

Individuals attending the STD clinic were offered an HSV-2 serology test for a $30 fee. ¹⁹ Women defendants from the community court were offered no-cost HSV-2 serologic testing. ²⁰ A total of 14 women were enrolled from the STD clinic and 14 were enrolled from community court. Participants recruited from both locations were given 90-day prescriptions for acyclovir and referred to their primary care physician for follow-up.

Procedures

Participants at both locations were women, 18 years of age or older and spoke English fluently. They completed three hour-long, face-to-face, semi-structured interviews with a woman researcher. The first interview was conducted within two weeks of receiving an HSV-2 diagnosis. The second interview occurred 4–7 weeks later, and the final interview occurred approximately six months after diagnosis. The interviews explored how receiving a HSV-2 diagnosis affected participants’ mental health and health behaviours over time. Items were grouped into four key domains, including: coping strategies for dealing with a diagnosis, frequency of condom use, suppressive and episodic acyclovir use, and the utilisation of HSV-2 support groups. Table 1 provides a list of key domains and related exemplar items to elicit participant response. During the interviews, participants were provided basic educational information about HSV-2, including how HSV-2 is transmitted, the use of condoms and daily suppressive therapy in reducing transmission, and the management of symptoms. All participants were compensated with a $40 gift card upon completion of each interview. The institutional review board at Indiana University approved the study, and each participant provided written informed consent.

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Table 1.

Key domains.

Domain	Exemplar item
Coping strategies	‘How are you dealing with being diagnosed with herpes?’ ‘If it bothers you, what do you do to help stop thinking about it?’
Sexual activity	‘How has your diagnosis affected your intimate relationships?’ ‘Do you feel your sex life is different now than it was before the diagnosis?’
Condom use	‘When do you use condoms with your partner?’ ‘Have you altered your condom use since this diagnosis?’
Use of acyclovir	‘Are you planning to take medication for HSV-2?’ ‘Have you been using suppressive therapy? How often do you use it?’
Support groups	‘Would you be interested in attending a herpes support group? Why or why not?’

Analysis

We focused on changes in women’s attitudes and behaviours over time; because interviews were individually tailored, not every participant was asked about their experience with each domain at all three time points. To conduct our analyses, we organised the transcripts in chronological order by participant and read the transcripts of each participant one-by-one, which allowed us to focus on factors related to change at the individual-level. This strategy is recommended by Saldaña for analysing qualitative data for change over time. ²¹ We included data from women for whom there was a response to key items in two or more of the interviews for each domain. Of the 28 enrolled, three were excluded because they completed only one interview.

Data from this study were analysed using content analysis to identify and interpret concepts and themes that emerged from the interviews. ²² This method involved multiple readings of transcripts and analytical induction via open and axial coding of data using NVivo software (version 10, Doncaster, Australia) to thematically organise transcripts. To describe the sample, descriptive analyses were conducted. To assess behavioural change over time for sexual behaviour, condom use, and acyclovir use, repeated measures ANOVA was used. All quantitative analyses were conducted using SPSS statistical software (version 21, Durham, NC, USA).

Participants

In total, 25 women completed more than one interview and were included in the analyses (15 black, nine white, one American Indian). Participant ages ranged from 21 to 61 years (median, 38 years; IQR = 33–47 years) (see Table 2). Most participants reported engaging in sexual behaviours with male partners only (88%; n = 22). Of the 13 women recruited from community court, five reported previous involvement in exchanging sex for money or living needs. There were no statistically significant differences in recruitment group composition by race or age. However, women recruited from the community court were significantly more likely to be unemployed (p = .03), have lower educational attainment (p = .03), and report exchanging sex for money or living needs (p = .02).

Coping strategies for dealing with a HSV-2 diagnosis

Women employed a variety of coping strategies following a HSV-2 diagnosis. Most women expressed initial shock and psychological distress. (‘Oh my god, it felt like a nightmare. It was the worst day of my life.’) Women were most concerned about how they had contracted HSV-2 and that HSV-2 could not be cured. Women reported engaging in a variety of behaviours to cope with their diagnosis, including an increase in religious activities, reaching out to friends or family for support, and an increase in consumption of alcohol and drugs. Below we explore each coping strategy in detail.

The role of religion and spirituality

For some women (32%, n = 8), their diagnosis caused them to increase the frequency of prayer and religious service attendance. Participants stated that spiritual activities helped them alleviate feelings of guilt (‘I went to church and felt relief. I got to clear my conscience for a little while, and I felt like that was important because I needed that.’), better understand what happened (‘I just prayed about it for the most part. Sometimes I just try to get an understanding of what happened.’) and receive support (‘I pray a lot, and if I miss going to church, wherever I am I stop to pray. Lord, help me deal with this.’).

Information seeking, staying busy, and social support

Fifty-six percent of women (n = 14) reported engaging in other activities to help themselves cope with their diagnosis (‘I do tasks or listen to the radio, find music that I can sing along with. If I’m at home, I find a conversation to have with my kids and forget about it.’), receive support (‘I’ve got a couple of really good friends I talk to and they’re telling me life’s not over, you can still have meaningful relationships with people.’), or find out more information (‘I’ve read the brochures on it and tried to get some information about how it came about, what you do to treat it, when not to have sexual intercourse and stuff like that.’)

The role of substance use

Nearly 20% of women mentioned an increase in alcohol and drug use following their HSV-2 diagnosis. Reports of alcohol and drug use were similar between participants recruited from community court (n = 3) and the STD clinic (n = 2). Participants stated the substance use helped them forget about their diagnosis (‘I drink, smoke marijuana, try to forget about it.’), or feel better (‘Weed, wine, whatever I feel is best at that time. More drugs, more prescriptions, NyQuil, anything to just make me sleep or make me feel better, that’s what I do.’).

Coping over time

Coping behaviours seemed to be more important for women at the initial interview than at the last interview, which indicates the need for coping mechanisms may decrease as time progresses and women adjust to their diagnosis. Interestingly, although women engaged in a variety of coping mechanisms, none of the participants reported an interest in attending support groups for people diagnosed with HSV-2, even though participants were given extensive information about a local group.

Preventing transmission to partners: Sexual activity

In addition to examining coping methods, we examined women’s sexual behaviour, condom use and medication use over time. There was a significant increase in the number of women reporting sexual activity over time (F(1, 20) = 22, p ≤ 0.01, η²= .524). The majority of women (80%; n = 20) reported abstaining from sex immediately after their diagnosis. However, as time progressed, most women reinitiated sexual relationships. By the six-month interview, 76% of respondents had engaged in sexual behaviour again. We use narrative data from one participant to illustrate this progression. At the first interview, one woman stated, ‘I’m having the trust issue, and I feel like maybe I want to [have sex], but I just can’t bring myself to right now. I’m not on that level yet. There’s just so many things that I have to iron out before I even go there.’ In an interview weeks later, she said, ‘We’ve not been intimate yet. We’re sticking to the dating process…sort of like starting over. We do a lot of kissing like we did when we were first dating. It’s working out.’ Six months later, she reported, ‘Yes, we have [had sex]. In the beginning, it was rough. Now, we have become closer. There’s more communication.’ This process was similar across participants. Thus, in this sample, it does not appear that there were long-term negative effects on the women’s sexual lives.

Preventing transmission to partners: Condom use

A few women reported an increase in condom use immediately following their diagnosis, but this change was inconsistent over time (F(1, 18) = .321, p = 0.58, η²= .018). Women who reported an increase in condom use stated that their diagnosis had made them more cautious, ‘Now I’m very cautious about not spreading it… I make that my first priority. I know there are still other diseases like HIV and AIDS. I don’t want to die, so it’s a must that I use condoms.’ However, most women reported no change in condom use. Several were already in long-term monogamous relationships in which they did not use condoms because they suspected their partner had already contracted HSV-2 (‘No, we don’t use protection. I know we should, but me and him don’t use protection ‘cause I feel it’s already too late.’). Some women stated that their sexual partners did not want to use condoms, even though they knew the woman had HSV-2 (‘It’s complicated. They know that I have it, but they don’t want to use condoms… they act like it don’t phase them.’). Thus, patient and partner knowledge of seroprevalence status alone was not sufficient to increase condom use.

Preventing transmission to partners: Acyclovir use

Medication use was low overall; 13 reported initiating treatment and uptake did not increase over time (F(1, 20) = .656, p = 0.43, η²= .032). Some participants reported they were not aware their prescriptions would run out after three months, ‘I felt like ya’ll should have said that after three months you’re not getting suppressive therapy anymore. I didn’t know. I’m thinking, shit, if you’re diagnosed with it, they’re gonna give it to you until you stop needing it.’ In Indianapolis, the cost for a 30-day regimen of suppressive therapy (400 mg twice per day) ranged from $35.88 USD to $125 USD without health insurance (personal communication with pharmacy technicians at Kroger, Marsh, CVS, Kmart and Walmart in Indianapolis, IN, USA). Some participants reported cost to be a barrier and found it a hardship to pay for medication. For example, a participant receiving Medicaid stated, ‘I have a three dollar co-pay, and I don’t have three dollars, but I got to come up with something. I got to get it filled so I can start feeling better. I am willing to go through the treatment and the things I have to do to have normal living.’

Others assumed that medication was only necessary for an outbreak and did not realise they would be shedding virus and potentially transmitting HSV-2 to sexual partners. (‘I still have not went to get the medicine because I don’t feel that I really have any symptoms.’) Reportedly, this erroneous belief was validated by their primary physicians, ‘My doctor said just to see, and if I have another break out, she’ll put me on it, but I haven’t had one.’ Several participants also expressed resistance to taking pills two times a day every day, ‘I hate taking pills. I don’t want to take those pills every day.’ Given the lack of financial resources to maintain a lifetime of suppressive therapy, limited physician support and the daily dosage regimen, acyclovir may not be an effective tool in preventing HSV-2 transmission, especially among asymptomatic women of low socio-economic status.