The participants comprised of five women and one man, 67% were African American, and the median age was 46 years (Table 1). The interviews were conducted between October 2020 to August 2021. The small sample size was primarily due to the COVID-19 pandemic, which impacted the opportunity for potential participants to learn about and participate in the study. Table 2 outlines the four themes, their subthemes, codes, and illustrative quotes, that were derived from the interviews. The first theme, role of HIV on partnership, explored the impact HIV disease had on the partner/partnership. Three topics, deliberate HIV transmission by partner, impact of HIV diagnosis on partnership, and presumed reaction if partner was diagnosed with HIV (reverse scenario) emerged under this theme. The second theme, impact of partnership on HIV, described the experiences from a different angle and explored the role played by the partner around the PWH’s HIV. Under this theme, three concepts were identified: importance of a partner in HIV, perceptions on dealing with HIV diagnosis without a partner, and role of family vs. partner in HIV care. Building on the impact of partnership on HIV, the third theme, forms of support from partner in HIV care, described the ways in which a partner provided support to the PWH during different phases of the HIV care continuum. Two areas, partner support around the time of HIV diagnosis and linkage to HIV care and partner support on retention in care, were uncovered under this theme. The fourth theme, perception on the types of partner-based clinic services, identified participants’ thoughts on the type of services at the clinic that can involve the partner of the PWH. Three areas, couples’ therapy, assistance with partner communication on sensitive topics, and HIV education of the partner, were identified under this theme. Each theme supported by quotes from participants are discussed in detail below using participants’ pseudonyms.
Table 1
Demographics of the Sample Population
Demographics
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N =6
Median/Count (Range/Percent)
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Age (years)
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46 (40, 51)*
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Gender
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Female
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5 (83%)**
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Male
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1 (17%)**
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Race/Ethnicity
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African American
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4 (67%)**
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White
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2 (33%)**
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*Median (Interquartile range); **N (%) |
Table 2
List of the Themes, Sub-themes, Codes, and Illustrative Quotes
Themes
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Sub-themes
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Codes
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Illustrative Quotes
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Role of HIV on Partnership
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Deliberate HIV transmission from the partner
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When I was married, he knew he had it [HIV] and gave it to me anyway, ‘cause he was always out to do somethin’ bad to a woman
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Impact of HIV on Partnership
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Positive
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He [former partner] actually keeps in touch with me. The first thing he want to know is am I undetectable, how I'm feeling, and how are my [HIV] appointments going. He's just been very, very caring and very open and honest about helping me stay in treatment.
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Negative
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I didn’t wanna invest any more time into someone who A, I felt like he obviously really didn’t care ‘cause if he did he would’ve been honest in the first place and B, he’s not gonna do anything to make his self any better, so why should I spend any more time on him?
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Presumed Reaction if Partner was Diagnosed with HIV (reverse scenario)
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"I don't think it would make any difference to me"
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I think I would’ve been as much there for him as he has been for me just because he is the only person in my life that I have ever been able to share freely and openly with.
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Gender-related reaction differences
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I think a woman’s feelings would be a little bit different than man
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Impact of Partnership on HIV
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Importance of a partner in HIV
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She was a pivotal—she was a very crucial component of everything [around HIV diagnosis]. Everything, really, at one point in time, revolved around her”
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Perception on Dealing with HIV Diagnosis Without a Partner
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"definitely more tragic"
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It could have been definitely more tragic because it woulda just put me alone and no one to talk to about that. Yes, things could have been a whole lot worse than what they were
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"woulda probably did it the same way"
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I woulda probably did it the same way I’m doin’ it now because I woulda went to my children’s like I did, ‘cause that’s my support
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Role of Family vs. Partner in HIV Care
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Family and partner playing a role
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It's family and my significant other, I would have to say, because they're both positive on so many levels
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Acknowledgment of the importance of partner
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In my opinion, family has to. A family is going to [be there] because that’s what they do but when you have a person that steps into your life and they’re willing to accept the good, the bad, and the ugly no matter what and still continue to be in a relationship with you, then that’s the biggest thing for me.
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Forms of Support from Partner in HIV Care
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Partner Support around the Time of HIV Diagnosis and Linkage to HIV Care
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Emotional support
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It wasn’t even him. It was me that was diagnosed and I’m sitting and I’m sharing with him and he’s the one giving me all these reasons for seeking [HIV] treatment…With him doin’ that, it’s like he pursued me to make me see the reasons why I needed to get treatment.
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Informational support
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[partner saying] ‘You can take the [HIV] medicine. You can get healthier…but if you don’t seek treatment then of course you’re gonna get very sick and you could possibly die’
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Tangible support
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I think a couple times he even provided transportation for me to go to the doctor.
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Forms of Partner Support on Retention in Care
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Emotional support
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He’s my emotional stronghold. He’s not only my moral support. He’s my spiritual support. It’s like he feeds my soul. He motivates me. He makes me want to be better because he’s better.
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Tangible support
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Sometimes he'll say, ’It's 6:00. Did you take your [ART] pill?’ I was like, ‘Yes, I took my medicine’
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Perception on the types of Partner-based Clinic Services
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Couples therapy
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If they [PWH] established a counseling, one on one, and then introduce that person’s significant other or whatnot into the counseling if that person wanted to.
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Assistance with partner communication on sensitive topics
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I think that would be very helpful because sometimes it's hard because you don't know how that person [partner] is gonna react [to HIV disclosure]
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HIV education of the partner
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If he has any questions that concerns my [HIV] health or health care, that I would [not] be able to answer him in a way that he could understand medically what I was talking about
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Role of HIV on Partnership
With HIV being a stigmatized, sexually transmittable disease, the burden of the HIV may pass on to the partner more than the diagnosis of other chronic diseases, such as diabetes or hypertension. This theme, therefore, described the experiences of how HIV impacted partners and/or partnership of the newly diagnosed individuals.
Deliberate HIV Transmission from the Partner
Partners keeping their HIV status a secret and deliberately infecting an individual was expressed by most participants. Marie (White female, age 50), whose partner kept his HIV status a secret, learned about it after finding his HIV medications; she noted,
He had already been diagnosed HIV-positive and even though we sat and talked about it, he did not share that with me. I just so happened to find medication while he was gone…I Googled the medication and my mouth hit the floor because it was an HIV medication.
The commonly identified reasons for partners keeping their HIV status a secret was partner’s own denial about their HIV diagnosis or the partner not caring enough about transmitting HIV to the partner. Donna (African-American female, age 64), who contracted HIV from her spouse, conveyed that her spouse was aware of his HIV status and yet infected her because “he was always out to do somethin’ bad to a woman”. Similarly, Zoey (African-American female, age 51), also infected by her partner, noted her partner being in denial about his own HIV status while with her which led to the transmission; she said, “He couldn't accept it. He was in denial when we were dating”.
Impact of HIV on Partnership
Participants reported how HIV at different stages was impacted by their partnership. For some individuals, HIV played a positive role on partnership. Marie, who thought nobody would ever love her because of her HIV diagnosis, found a partner in her best friend when she disclosed her HIV status; she noted,
It built a bond between us… He just went from the role of bein’ my best friend to bein’ my partner and it’s weird that it came after I shared my [HIV] status and my diagnosis with him. It drew us closer.
Similarly, Zoey, who is no longer with her partner from the time of diagnosis, stated that, even though she is no longer in the relationship, her former partner still makes sure she is maintaining her HIV care.
The impact of HIV on partnership, while positive in some, was reported as negative in others. Some individuals reported their partnership ending because of their HIV diagnosis. Katherine (African-American female, age 26) noted ending the relationship as she felt her partner was not “honest” with her by keeping his HIV status a secret. On the other hand, John (African-American male, age 42), who was not infected by his partner, also expressed his HIV diagnosis bringing a gradual “divide” in their relationship; he said, “she got really scared and didn’t really know how to handle it [HIV] just as much as I didn’t. I think that played a big part in the separation, the vibe”.
Presumed Reaction if Partner was diagnosed with HIV (Reverse Scenario)
We sought to understand how the participant would have reacted had the situation been reversed, i.e., they had to deal with their partner being diagnosed with HIV. All participants thought they would have been supportive. Zoey expressed being there for her partner had he been diagnosed with HIV; she noted, “I would still be there for him and support him and make sure that he was doing all he could do to maintain his [HIV] health care...I don't think it would make any difference to me”. In addition to being there for his partner, John noted partners “abandoning” because of a HIV diagnosis and how he does not see himself doing that.
When asked if their responses were influenced by their gender, Zoey thought gender did not impact how a person supported their partner and what mattered was the relationship. In contrast, Marie noted gender playing a role in how a person deals with their partner’s diagnosis; she stated, “Women would look at it from an emotional standpoint …men are logical. They’re thinkers. I was more emotional, so I think gender does make a difference in the way that you approach the HIV diagnosis”.
Impact of Partnership on HIV
While participant’s HIV impacted the partnership, partnership impacting the participants’ HIV, was also observed. This theme explored the role played by the PWH’s partner along the participant’s HIV care continuum.
Importance of a Partner in HIV
A positive role played by the partner in PWH’s HIV was reported by most participants. Zoey noted her partner at the time of diagnosis playing a major role in her linking to HIV care; she noted, “He was a real big influence on helping me get on my medication and get on the right kind of treatment plan that I needed to help me”. Similarly, John highlighted his partner around the time of his diagnosis being a “crucial component” in him connecting to HIV care. However, John did not feel the need to involve his partner (different from the time of diagnosis) in his retention in HIV care as he had learned how to deal with HIV on his own. In contrast, Marie noted her relationship playing a motivational role on her maintaining her HIV care; she noted, “As long as we can keep it [HIV] suppressed and I do what I’m supposed to do, then we’ll be able to maintain the same life that we’re choosing to have together”.
While many participants stated their partner playing a positive role around the time of diagnosis, Blair (White female, age 40), who’s ex-partner from the time of diagnosis was not engaged in her HIV care, noted that, had she stayed in the relationship, she would not have been motivated enough to seek HIV care. When asked how her partner would have played a role in her HIV care had she stayed in a relationship with him; she said, “I don’t think that he would’ve been supportive…I would not have been taking my medicine. I would not have been going to my appointment”. Lastly, Katherine’s partner was not involved in her retention in care as she had not disclosed her HIV status due to being “scared” of facing partner’s rejection. When asked how she foresees her partner playing a role in her HIV care if she decides to disclose her HIV status, Katherine anticipated her partner hurting her. Although Blair and Katherine reported unsupportive partners, they did note the significance of a supportive partner in one’s HIV care.
Perception on Dealing with HIV Diagnosis without a Partner
The participants described their thoughts on coping with their HIV diagnosis without the presence of a partner. Where some participants thought things would have been worse without a partner’s support, others noted it would have not made a difference. Zoey, who thought having a partner to be important, noted that dealing with HIV without a partner to be “definitely more tragic”. Similarly, Marie expressed dealing with HIV diagnosis alone to be difficult; she noted,
I would’ve probably killed myself with drugs…I think had he not been there and gave me the motivation and the support, undying support that he gave me, I really do not believe that I would still be alive today because that’s not the way I chose to go.
On the other hand, Donna stated absence of partner did not make a difference on her dealing with her HIV diagnosis due to available support from her children. Similarly, Blair noted, “Once I found out about it [HIV], I felt like it was all me and I was gonna have to do whatever it took for me and it wasn’t about him [partner] anymore”.
Role of Family vs. Partner in HIV Care
Of all the relationships in one’s life, all participants reported family and/or partner playing a significant role in their HIV care. When asked who played a bigger role, mixed responses were given. Marie noted that her family and partner both played a role in her HIV care. However, she noted that her partner played a greater role; she said, “In my opinion, a significant other or a partner has the greatest influence on me in my HIV treatment”. Similarly, Zoey mentioned discussing her HIV health more with her sister than her partner, but stated both, her sister and her partner playing an equally important role.
On the other hand, some participants who were partnered at the time of diagnosis but ended the relationship after discovering the dishonesty from their partner’s side, thought family to play a bigger role in their HIV care. While these individuals did not have a partner to influence their HIV care, they acknowledged the importance of having a partner in dealing with health conditions. Moreover, support from partners was noted as special as partners made a conscious choice to provide support to their partner as compared to family members, who mostly provided support due to having a biological bond. Marie noted partner accepting a person’s health condition(s) and still choosing to remain in the relationship to be valuable. Similarly, Donna said,
When you get the opposite sex to help you along your journey, whatever your sickness is, that’s very important...When somebody that’s not related to you can take all of the load to help you along the way, that’s good for you to help you come through whatever it is you’re going to through.
Forms of Support from Partner in HIV Care
This theme explored ways in which a partner provided support to the participants. This was divided into support around the time of diagnosis and linkage to HIV care and support with HIV retention in care. The most common types of support identified by the participants were emotional support, informational support, and tangible support.
Partner Support around the Time of Diagnosis and Linkage to HIV Care
Different forms in which a partner provided support around the time of diagnosis and linkage to care were expressed by participants. Emotional support was the most commonly expressed form of support. Other forms of support included informational and tangible support. Marie noted experiencing support in the form of acceptance and encouragement from her partner to seek HIV treatment. Similarly, Zoey noted her partner’s positive attitude and education on life with HIV making her less scared of the disease; she stated,
Him being positive and assuring me that people have lived 10 and 15, 20 years as long as they take their [HIV] medicine and go to their appointments. He took away some of that fear I had of the unknown about what was gonna happen to me.
Moreover, despite the negative consequences on the relationship brought on by John’s diagnosis, he did note his partner being a ‘positive force’ and providing reassurance of normalcy of life after HIV diagnosis.
In addition to emotional support, partners also provided informational support. Marie stated her partner highlighting the importance of seeking HIV treatment. Similarly, Zoey noted her partner educating her on where to seek HIV treatment; she said, “He told me about the [HIV] Clinic, and I went and got evaluated and went through the proper channels to get in there”.
Participants also experienced tangible support from their partners. Some participants noted their partners providing transportation to the HIV clinic. In addition to providing transportation, John noted his partner around diagnosis helping with the paperwork needed for linking him to HIV care and making sure he had his HIV medications; he said, “She went and got my [ART] refills, all the medicine, paperwork, everything”.
Partner Support in Retention in Care
This sub-theme explored ways in which the participants experienced support from their partner which impacted their retention in care. This included the partner providing emotional support and tangible support. Emotional support was again the most common type of support experienced by the participants around HIV retention in care. Participants reported partners providing a sense of belonging The feeling that the life of PWH mattered to someone kept PWH motivated to maintain their HIV care. Zoey noted that, even though being un-partnered and dealing with HIV care (in a hypothetical scenario) would not have meant she would have fallen out of care, having someone did provide a “wonderful” feeling. Similarly, Marie noted, “It gives my soul joy to know that somebody cares that I wake up every day, so it motivates me to do better today than I did yesterday”.
Some participants mentioned their partners providing appointment reminders. Zoey noted her partner making sure she remembers about her upcoming appointment; she said, “He'll send me a text message as a reminder about what time an appointment is”. Similarly, Marie talked about her partner helping her to remember her HIV appointments as “second nature”.
As daily medications such as ART are taken around the same time every day, Zoey noted her partner making sure she took her medication at the correct time. Similarly, Marie noted her partner helping with getting her in a routine of taking her ART; she said,
He’s the one that got me on the schedule with my medication...for two weeks, he sent me a reminder that would go off every mornin’ at 6:15. ‘Take my meds’, so that’s what I did for two weeks until I got into the habit of just automatically walkin’ to the bottle, gettin’ it first thin’ in the morning.
The partner making sure PWH has transportation to the clinic was also noted. Zoey noted her partner ensuring she had available transport to attend her HIV care appointments. Similarly, Marie noted her partner making sure her car has enough fuel for the drive to her HIV appointment; she said, “He has came and pumped my gas ‘cause he knows usually when I drive from here to my appointment, it takes so long”.
Perception on the Types of Partner-based Clinical Services
Understanding how relationship dynamics play a role in HIV care could be helpful in designing clinic-based services that involve the partner of the PWH. These services can be aimed at improving HIV linkage and retention in care in the newly diagnosed individual. Keeping these potential services in mind, participants were asked their thoughts on potential areas in which these services could focus, that would be beneficial. Participants recommended services such as couple’s therapy, a mediator assisting with partner communication on sensitive topics, and HIV education of the partner.
Couples Therapy
As a majority of the participants sought care from a therapist along with their HIV care, most participants suggested having similar sessions for couples. Donna suggested partner accompany her to her therapy session. Zoey suggested having a joint therapy session (partner and PWH) with a therapist, similar to that already offered to her at her HIV clinic; she said, “I think that would be wonderful if couples could come in and see the psychotherapist or if they had a class or a study or something involving couples”.
Assistance with Partner Communication on Sensitive Topics
These suggestions involved the therapist helping with discussing sensitive topics, such as HIV disclosure or mediating communication among the couple on other sensitive topics. John suggested mediating the HIV disclosure to the partner; he stated,
The process of telling their significant other about their condition or their [HIV] diagnosis…For the person [with HIV] that is having a hard time accepting and disclosing that information to others, I think it could be really helpful. I think it could be a life or death type of saving for some people.
In addition to HIV disclosure, Donna suggested having a therapist to help with communicating topics that the patient may find difficult or feel hesitant about communicating with their partner alone; she said,
Maybe they [partner] would ask your therapist, “can they sit in with a session with you” …they could be dealin’ with you and have something bundled up inside and so many things they wanna say, but they don’t wanna say it to you ‘cause they might not wanna hurt your feelings.
HIV education of the partner
All participants suggested providing HIV-related education and clearing any misconceptions that a partner may have around HIV. Blair suggested having a session where the partner can get educated on the Undetectable = Untransmittable strategy,` or U=U,(15) to be helpful; she said,
I think there needs to be something where the spouses can go get educated, where it’s not just us telling them, “Okay. I’m on this medication and I’m non-detectable and it’s okay, we can have intercourse now and you won’t get it …they could go in there and get educated on the different types of medicine that their spouses are on and how that would relate to them in their specific relationship.
Zoey suggested partner utilizing these services to ask HIV-related questions. Marie added her partner preferring getting answers on HIV-related questions from a professional in the field. Additionally, Donna suggested using these sessions to clear any misconceptions that the partner may have about HIV.