Sustained Sobriety: A qualitative study of persons with HIV and chronic hepatitis C coinfection and a history of problematic drinking

Abstract

For persons diagnosed with HIV and who are coinfected with hepatitis C virus (HCV), chronic liver disease is a leading cause of death and excessive consumption of alcohol can be a contributing factor. Little is known about the factors these individuals identify as key to achieving sustained sobriety. In this qualitative study, fourteen HIV/HCV coinfected persons who endorsed past problematic drinking were interviewed about their path to sustained sobriety. In open-ended interviews, participants often described their drinking in the context of polysubstance use and their decision to become sober as a singular response to a transcendent moment or a traumatic event. All articulated specific, concrete strategies for maintaining sobriety. The perceived effect of the HIV or HCV diagnosis on sobriety was inconsistent, and medical care as an influence on sobriety was rarely mentioned. Qualitative interviews may offer new insights on interventions and support strategies for heavy-drinking persons with HIV/HCV coinfection.

INTRODUCTION

Up to 25% of persons living with HIV are coinfected with hepatitis C virus (HCV) in the United States (1). For these individuals, chronic liver disease is a leading cause of death (2). One of the major factors contributing to the progression of liver disease is the excessive consumption of alcohol (3,4). Alcohol use disorder (AUD) has high prevalence in HIV/HCV coinfected individuals (4-7). In addition to liver disease, heavy alcohol consumption in the coinfected population is associated with greater risk for nonadherence to highly active antiretroviral therapy and lack of engagement in medical care (8-10).

When compared with HIV mono-infected individuals, those living both with HIV and HCV may be more likely to abstain from alcohol, although the subset that does drink are likely to drink to excess (11). Indeed, coinfected abstainers from alcohol may be more than twice as likely as HIV mono-infected individuals to have a prior AUD, suggesting that many coinfected persons can be successful at recovery (12). Diverse factors contribute to sobriety, including positive (health improvement, support from friends and family, self-reflection, spirituality) and negative reasons (health issues, legal problems, seeing consequences in others (e.g., alcohol-related death), negative mood effects) (13-16).

Qualitative studies of samples from the general population have suggested that both external support systems as well as internal self-identity changes can be important in preventing relapses (14,17-18). Some studies of HIV mono-infected individuals have suggested that HIV diagnosis may also be a motivator (19), but studies have not specifically examined the combined impact of HIV and HCV diagnoses.

Excessive alcohol use poses heightened health risks for people with HIV/HCV coinfection, but it remains unclear how best to facilitate a reduction tailored to the specific needs of this key population. Among a cohort of people with HIV/HCV who use alcohol, using alcohol as a coping strategy was correlated with depressive symptoms (20). Qualitative studies have documented the challenges in achieving and maintaining sobriety for individuals with substance use and mental health comorbidities (21,22). Substance use is known to both be a maladaptive coping strategy for mental health conditions (20,23), and is known to exacerbate some mental health conditions (24-26). Furthermore, substance use has been associated with adverse socioeconomic outcomes (homelessness, lack of social support) (27). Given the unique pathways to recovery and the complex medical and psychosocial needs of dually diagnosed individuals, treatment approaches that are flexible and address multiple needs simultaneously (e.g., self-help groups that are accepting of mental health medications, housing-first programs, tailored case management) are often most effective (28, 29). However, there has been little qualitative exploration of the challenges of sobriety facing those with HIV and HCV.

Qualitative interviews of coinfected individuals who have achieved sobriety offer an opportunity to document insights that may help inform future substance use interventions for this group. The presence of coinfection may facilitate sobriety either through health consequences or ongoing contact with medical professionals, or may complicate this due to polysubstance use or injection drug use, a common route of transmission for both infections (30).

In this qualitative study, we interviewed HIV/HCV coinfected patients with one or more years of sobriety to enhance our understanding of the factors that informed their ability to achieve and maintain sobriety. We conducted unstructured interviews, an approach that permitted each participant to describe their experiences in their own words, thus revealing a range of motivations and tactics.

METHODS

Adult outpatients with HIV, a history of chronic HCV coinfection, and who consumed at least 4 alcoholic drinks per week in the past month were recruited at an HIV primary care clinic in Seattle, Washington for an alcohol intervention study between May 2015 and June 2017 (16,31). During recruitment, we identified persons who were ineligible for the parent study because they reported no current alcohol use. These individuals were then asked: Was there ever a time when you drank more than you have been drinking recently? If so, when was the last time you drank/drank more?

One hundred and three individuals reported a time when they drank more in the past. Some were not approached for the qualitative study based on their responses to the parent study screen (reported current drug or alcohol use, reported no problems related to alcohol use), others refused participation in the qualitative project, and still others were not able to be contacted to screen for the qualitative study. Of these 103 individuals, 21 were interested and screened for this qualitative project. From these 21, we ultimately enrolled 14 persons who (1) were age 18 years or older, (2) had HIV (3) had a positive HCV RNA (viral level), (4) had been alcohol-free for at least one year, and (5) self-reported a history of problematic alcohol use. Problematic drinking was defined as a self-identified diagnosis of AUD or alcohol-related problems with family or employment. We excluded anyone who had used cocaine, benzodiazepines, or any opioids in the past year and anyone with cognitive impairments or who were unable to understand English.

We sought to conduct approximately 15 qualitative interviews based on empiric data from social and behavioral research fields, which have suggested 12 to 17 interviews are often sufficient for saturation of themes (32,33). Indeed, concepts and topics began to repeat in the last few of our 14 interviews, suggesting thematic saturation was achieved. Based on both this finding and the limited pool of potential participants, data collection was terminated at this point. Because the goal of this qualitative study was to allow participants to speak to their experiences in achieving and maintaining their sobriety, we worked with few pre-determined questions and without any a priori categorization (34). This approach allowed the interviewer to tailor questions to augment information the participant initially provided (35).

A guide to topics (Table I) that might be covered in the interview was developed by an interdisciplinary research team that included clinical psychologists and physician scientists. The interviewer asked an initial question, ‘Tell me about when you first started drinking/’ After this question, the interview was unstructured, allowing greater breadth and depth of responses and follow-up questions related to the participants’ history of drinking, their decisions to become sober, and how they stayed sober. If the participant did not spontaneously mention certain issues, such as physician involvement in their sobriety or the timing of their original diagnosis of HIV and HCV infection in relation to alcohol use, the interviewer would ask about those issues in an open manner to ensure similar topics were covered across participants. The interviews were conducted by the first author (AH) in a private room near the clinic, captured on a digital recorder, and transcribed verbatim. They ranged from 30 to 60 minutes, and the participants were compensated $30 for their time. All study procedures and materials were approved by the Human Subjects Division of the University of Washington.

Table I:

Interview Topics

Interview Domain	Interview Topics
Active Drinking	Alcohol use initiation Description of life when actively drinking Role of HIV/HCV in drinking behaviors
Becoming Sober	Timing of sobriety Description of process of becoming sober Description of motivations for becoming sober Previous attempts at sobriety Facilitators and/or barriers to becoming sober
Sustaining Sobriety	Description of life since becoming sober Contributors or challenges to sobriety maintenance Strategies for maintaining sobriety

Qualitative analysis was conducted using theory-based inductive methods to identify key themes (36). The transcriptions were transferred into a software program, Dedoose version 8.0.32, for storage, coding and analysis (37). The interviews were provisionally coded in short segments by the first author with both descriptive and interpretive codes, and a coding scheme and codebook were developed based on concepts that repeatedly occurred across the set of interviews. To guard against bias, a second coder (AL) applied these codes independently to the interviews as well as adding codes of her own. Both coders used concepts of thematic analysis (38) to identify commonalities and differences in participants’ experiences and to find patterns of meaning (themes). The themes and sub-themes that emerged were identified and refined through a recursive process by consensus of the two coders.

RESULTS

Participants

Two women and 12 men participated in the interview, with a mean age of 52 years (range 26-75). Most were white (n=7); three were African-American, two were Native American, and two self-identified as Multiracial or Other. The duration of sobriety ranged from five to 27 years, with an average of 12.8 years (SD 6.9) (Table II). Before sobriety, all 14 endorsed problems related to alcohol use—lack of employment, family issues, jail—that severely affected their life. A majority (n=9) reported experiencing episodes of homelessness.

Table II:

Study Demographics

	n	%
Gender
Male	12	86%
Female	2	14%
Transgender	0	0%
Racea
Caucasian	7	50%
Black/African American	3	21%
Native American/Alaskan Native	2	14%
Multiracial/Other	2	14%
Ethnicity (n=13)b
Hispanic/Latinx	3	23%
Not Hispanic/Latinx	10	77%
Age (n=13)b	Mean	SD
Range: 26 to 75 years	52.1	11.8
Months Since Diagnosis	Median	IQR
HIV (n=14)	220	144
HCV (n=11)c	126	90
Ever received HCV treatment? (n=13)b
Yes	10	77%
No	3	23%
Currently on antiretroviral HIV treatment? (n=13)b
Yes	13	100%
No	0	0%
Years since stopped drinking/drank less (n=13)b	Mean	SD
Range: 5 to 27 years	12.8	6.9

^aNo participants self-identified as Asian or Pacific Islander/Hawaiian.

^bData missing for 1 participant.

^c3 participants reported "don’t know" date of HCV diagnosis.

We identified four broad themes over the course of these interviews (Table III): polysubstance use, sobriety as a revelation, sobriety maintenance, and the relationship of the participant to medical care.

Table III:

Themes Identified from Unstructured Interviews

Polysubstance Use	Sobriety as a Revelation
Coping mechanism for adverse life events and/or mental health conditions Alcohol facilitating other drug use	Traumatic event God/Spiritual awakening Accumulation of negative life consequences
Sobriety Maintenance	Impact of HIV/HCV Diagnosis and Care on Sobriety
External social support:group support, mental healthcare, friends/partners/family Internal learned strategies: view of addiction as a permanent challenge, remembering the consequences of using Creating a structured life: finding a “purpose;’ learning life skills such as paying the rent	Varying impact of HIV/HCV diagnosis and care on sobriety: no impact, a reason to drink more, or a reason to quit Equating sobriety with willpower not disease Physicians mentioned as a source of general support unrelated to sobriety

Polysubstance Use

Thirteen of the 14 participants recalled using other substances such as heroin, cocaine and methamphetamine concurrent with their alcohol use (polysubstance use). Participant 3 commented, “I maybe shot heroin one or two times, something like that, and um, I was doing crack, smoking marijuana and drinking. You know all those things go together,” Participant 2 similarly endorsed polysubstance use, explaining “And I knew, I really knew that I would like it [heroin]. Because I liked everything. I had abused everything that I tried.” Most participants initiated both drug and alcohol use as adolescents or teenagers, starting as young as age 9. Most either started with alcohol or initiated both drug and alcohol use at around the same time. Only a few started by using drugs and later progressed to alcohol use.

Ten of the 14 participants explicitly identified drinking as a way to cope with mental health conditions (including symptoms of depression, anxiety, ADHD, and bipolar disorder) and/or adverse life experiences (including abuse, death of loved ones, and experiences of homelessness). While the remaining four participants did not explicitly identify their alcohol use as a coping mechanism, all four described adverse life experiences in their stories of alcohol use and recovery. Participant 2 explained:

That was my first drinking; looking back I could see there was a problem. Maybe a year and a half later one of those friends ended up drowning and that was a traumatic incident and two years after that my mom passed away And traumatic incident- and that’s when I really started using. I smoked marijuana for the first time. Started drinking and sneaking pills.

Participant 11 reported using alcohol to manage the symptoms of their biploar disorder, saying “it [alcohol] calmed me. I thought. I had this calmness in my head. I’m really bipolar. I kind of medicated myself to feel better.” Similarly, Participant 7 described using alcohol both as self-medication for undiagnosed bipolar disorder and as a strategy to cope with life on the street:

Interviewer: When were you diagnosed with bipolar? When you were drinking did you know?

Participant 7: No. I didn’t think-I thought that’s the way I was. My mother had the same thing. But it was called manic depression back then. They changed the name. […] [Alcohol] took all the feelings away. That I didn’t want. And I guess that’s why I kept using it. It was like a giant Band-Aid. Every time I felt rotten inside—and for some reason I kept feeling rotten inside all the time—and so I had to drink more. […] Anyway, I had to keep drinking to keep warm. It does get really cold. And my last winter there I lived inside a snowsuit. With a lot of clothes underneath it. And I was scared to death.

Additionally, several participants confirmed that alcohol facilitated other substance use. Several participants mentioned they would use both alcohol and stimulants as a way to balance their high. Participant 10 stated:

I found crystal meth when I was 23. And that I loved. I didn’t like it as much as I liked the alcohol. Alcohol was my drug of choice. But the crystal meth really made it so I could do more alcohol.

Participant 5 similarly used both alcohol and stimulants, and also went on to identify a link between their alcohol use, drug use, and HIV/HCV exposure.

So it turned into a very mixed thing with the two. To keep drinking I would use meth to stay awake. And not pass out. But I’d drink so much that I’d pass out anyways. […] And that’s where the hepatitis kind of came into the picture. Needles came into play. And I want to be really honest, needles didn’t come into play until one day I was really drunk and I was, ‘fuck it, let’s try it.‘ That’s where HIV came into play.

A majority of participants identified a close connection between their alcohol use and other drug use, and described the need to address polysubstance use and mental health as part of their recovery.

Sobriety as a Revelation

The second theme, sobriety as a revelation, emerged as participants described their decision to become sober as a singular response: a transcendent moment, spiritual awakening, or traumatic event. While some participants described using alcohol as a way to cope with adverse life events as described above, a few others explained that these events influenced their becoming sober. Participant 1 had previously wanted to quit or cut down on their drinking, but ultimately stopped after their wife and son were killed by a drunk driver. They stated, “I have not touched it since that day. I sweared that I would never drink again” and went on to explain that:

After my wife’s funeral everybody at the wake, you know, were drinking. My aunt several times brought me a drink. And I said ‘I’m not drinking no alcohol’ and she said ‘Oh, okay.’ But she was quite surprised because most people in my family at a wake, at a funeral, they usually got shitfaced. I’m sorry. That’s them. Not me. I didn’t give a damn. I’m not going to drink again.

However, most participants were not able to point to a specific event resulting in their decision to become sober, including their HIV or HCV diagnoses. Many acknowledged that while they had wanted to stop using, there were small windows when factors aligned and they were in the right mental, physical, and emotional space to become sober. Participant 9 stated, “I believe there are windows of grace where I can get sober. That’s how I have experienced it. It’s not every day. It’s not every hour. There are windows of grace and things have to be set up just so for me to get sober.” This participant further explained this idea saying:

You don’t see it till you see it; you don’t hear it till you hear it; and you don’t get it till you get it. […] I’ve heard people for decades now saying the same stuff. Repeating things in meetings. Never meant a thing to me. And all of a sudden it will just click on a different level. But that’s because I’ve done so much work already that I can understand it at a different level.

Some participants spoke about how they had support systems and resources easily accessible during these “windows of grace”, which allowed them to take advantage of these moments and begin their recovery.

Sobriety Maintenance

In contrast to the generalized, revelatory nature of how participants described their decision to become sober, all articulated specific, concrete strategies for maintaining sobriety, the third theme. Popular strategies included group support, spirituality, developing willpower, creating a structured life, and accessing mental healthcare. Ten of the 14 participants reported ever going to self-help support groups such as Alcoholics Anonymous (AA). One participant mentioned going to a support group for women with HIV. While some participants found these meetings to be unhelpful or even triggering, many others reported benefitting from group support. Participant 4 appreciated hearing other people’s stories about sobriety and relapse, “I go to meetings to hear the message. […] I know one person that’s got about 35 years of being clean and sober. And there’s some that go out 2 or 3 months and then relapse. I want to go and hear both messages.” Some participants also spoke about the role religion or spirituality played in their recovery. Participant 9 explained the importance of spirituality and the social support they found in self-help groups:

Spirituality is really base for me staying sober. But I also know from my experience that spirituality alone will not keep me sober. I need to be surrounded by, I need to be immersed with other people. I go to meetings four, five times a week. I love going to meetings. For me, they are often a spiritual experience. It’s seeing friends. It’s getting hugs. I describe it to some people who don’t understand, it’s kind of like going to church in the morning for me. I get recharged. I get refueled.

Developing willpower and a clear intentionality was one strategy that was often mentioned. Participant 10 found it helpful to consider the consequences of drinking and “make a choice”:

You have a choice. You have free will. And that free will goes along with everything. You’ve got free will to choose whether or not you want to drink. You have a choice whether or not you want to, or you don’t want to. You remind yourself of what happens afterwards.

Indeed, the emphasis on willpower in this sample is consistent with AA and other self-help programs’ message of taking a personal inventory of wrongs and moving toward personal responsibility. Even the few participants who conceptualized their addiction as a disease spoke about willpower. Participant 4, who both conceptualized their addiction as a disease and regularly went to AA meetings, stated:

So this is one thing I never acquired is a sponsor. Because I’ve known people who have had sponsors and have relapsed. In other words, it’s up to the individual what they want to do. It’s just like they’ve got laws and stuff out here, and people break them. And what I do is that, I know that if I want to do something it’s not impossible. I can do it. I don’t have to tell nobody you know.

Many of the participants spoke about willpower with pride, considering their sobriety to be an accomplishment.

Several recalled purposefully creating a structured life and finding a “purpose” as part of their recovery. Participant 3 explained that building general life skills and establishing a more structured life helped them to increase their overall self-efficacy: “I went to a life skills class. Yeah, I had to. Because I didn‘t want to depend on somebody else. I need to do my own stuff.” Participant 8 stated that their job as a community organizer impacted their becoming sober and motivated them to maintain their sobriety:

I was really finding my purpose, exactly. Which is what it took, a combination of reaching that place internally where it’s like it’s not worth it anymore. And you would think so many other times it would have been that. But it wasn’t. But it finally got to that point and I think having the beginnings of that structure was also probably played into that too. […] I very much structure my life and days in ways that are protective. Not like I’m avoiding it, it’s more like I fill my life with lots of things that make me happy. I always eat the same foods in the morning. I listen to the music that I like. I stick with a routine.

Others mentioned relying on social support from friends and family, and several became sober along with a partner. Lastly, several participants described the role of mental healthcare in their recovery to cope with or work through underlying mental health conditions or trauma. Participant 3 had been abused in their youth and explained that their psychiatrist “tells me that I have a right to speak up for myself That I don’t deserve to be mistreated. Or abused. Or anything. And not to let anybody take advantage of me. And I could do what I want to do” empowering them to maintain their sobriety. Overall, participants used a unique variety of different strategies to maintain their sobriety. Participant 5 summarized:

I attacked my disease of addiction and alcoholism from everywhere I could. I tried the spiritual thing with the 12 steps. I tried the medical thing where my doctors were like, “okay, you’re going to go through something I’m going to give you this antidepressant to help you go through this. I’m going to give you this for sleep.” And I took all of it. And the counselors, they have a little more. I’m going to call it, logical way thinking. A scientifically way of doing things ish. And I ran with that. And I used all the tools I had available to me. They were all there.

Impact of HIV/HCV Diagnosis and Care on Sobriety

Exploring the relationship between participants’ sobriety and their HIV/HCV diagnoses and care was one key objective of this project; therefore these experiences are explored in this fourth theme. This theme deals with the impact of an HIV/HCV diagnosis on participants’ drinking, the role that their HIV/HCV providers played in their sobriety, and their conceptualization of their alcohol use as a matter of willpower rather than a chronic disease. Both at the time of their active alcohol use and their becoming sober, all but two of the participants were engaged in medical care for their HIV and HCV. Three of the 14 participants received their HIV/HCV diagnoses only after they had already stopped drinking. Interestingly, the perceived effect of the HIV or HCV diagnosis on their drinking was heterogeneous across the remaining 11 participants. Approximately half of these 11 (n=5) endorsed little to no impact of their diagnoses on their substance use. For example, participant 9 said:

I would say that I knew it wasn’t helpful for me to be drinking and doing drugs with those two things [HIV and HCV] going on. Or even just the HIV. But it just gets pushed to the background once you’re using. It’s not about that at all. It doesn’t even loom there most of the time. I was so caught up in the drinking.

Several participants admitted that a diagnosis gave them a reason to drink more, either because they thought they would not live long enough to see the negative consequences of their alcohol use due to their HIV and HCV, or as a way to cope with their diagnoses. Participant 8 explained:

So when I found out I had both [HIV and HCV], I started drinking a little bit more than I had been. We [my partner and I] both started using heroin [again] […] I didn’t cognate that but definitely it was my coping mechanism so, it really was ‘fuck it.’ Dealing a lot with processing the stigma. There was all this shame tied to the stigma. Things like that. Going into it, I personally was like, I had been weirded out by people with HIV. I didn’t know that much about it so it made me feel like diseased and dirty at the time.

In contrast, three participants saw their diagnosis as a “wake up call” to become sober. Participant 3 in particular stopped drinking when they were hospitalized with an HIV complication, stating:

When I was diagnosed, they had me on [inpatient unit] for a long time. I didn’t know nobody. I didn’t know where I was. I didn’t know my name or anything. […] So uh it was terrible. Because I had to learn everything all over again. Everything. […] It’s because, uh, the HIV went into my brain. If that makes sense to you. I wasn’t on any medication and it went into my brain. […] And it was God. I didn’t look back once I got clean and sober. I didn’t. I wouldn’t live if I went back to that. So, you know what, I often think about. I know I believe in God. I know He loves me. So I’m thinking He wanted my attention, right? I don’t want to say He gave me HIV because He’s not that kind of a God, but something happened to me to get my attention [to stop using] and it did.

Similarly, while participant 7 did not receive their diagnosis until after they had already stopped drinking, they attributed their cessation to adverse health consequences related to their alcohol use:

I finally started getting a lot of pain to my side. And the doctor said they didn’t know what it was. They couldn’t find anything. But I had diarrhea all the time. I was coughing and spitting up blood. So finally, I knew what it was. I knew it was alcohol. So I finally had to quit and by the time I quit I had HIV.

Still others described their diagnoses as having a more complex impact on their alcohol use that changed over time. For example, participant 11 said that while their hopelessness about their diagnosis initially enabled their drinking, it eventually contributed to their becoming sober:

I went through a period of time where I was, ‘who cares now. I’m going to die anyway.’ I used it as an excuse. But after a while, it helped get me clean, being HIV positive. Because I don’t want to die without being somewhat of a respectable person.

The three individuals who received their HIV/HCV diagnoses after they became sober were each probed about whether their diagnosis was at all triggering for them. Each indicated that understanding their prognosis and treatment options helped ease any anxiety or stress that might potentially trigger a relapse. Participant 2 explained that their diagnosis did not make them want to use “because I had volunteered at every HIV thing you could think of everything in the gay community that you could think of so I knew it wasn’t a death sentence and you know you just go and get medication.”

Despite being engaged in ongoing medical care, few participants described their problematic substance use as a disease. Generally, participants described addiction as a negative coping mechanism and considered themselves to be current or former “drunks”, “alcoholics”, and “addicts.” Given that a majority of participants had attended self-help meetings like AA at some point, it is perhaps unsurprising that this is aligned with core components of AA, specifially that someone must admit their powerlessness over alcohol and that “once an alcoholic, always an alcoholic.” For example, participant 4, who had been sober for a decade, explained:

See, I’m an addict. The only thing is I’m in not in active addiction. I’ll be an addict for the rest of my life because there’s no known cure. I mean, this comes from people that wrote the books, that wrote the literature. There’s no known cure, and I can accept that. As long as I’m not in active addiction. I’m an addict. That don’t make me a really bad person.

In contrast, participant 3, who used to chair AA meetings and spoke extensively about the role of religion and God in her recovery, described overcoming her addiction and how her family and loved ones see her as a different person: “I’m not that other girl. […] A lot of people would see the change in me. […] He [Reverend] says ‘You can’t give up now. You came a long way. From nothing to something.’” It’s interesting to note that while many self-help programs like AA do consider alcoholism to be a disease, few participants spoke about it in these terms. Only one participant mentioned ever trying a pharmacological treatment (Antabuse) for their alcohol use.

When these participants did mention their physicians, which was rare in these narratives, it was typically with positive regard, but only in terms of general support. Often they described their physicians as being non-judgmental about their substance use, continuing to provide care despite the participant going against their advice to stop using. Participant 13 said:

I started seeing [doctor] and she goes ‘I want to treat you and, I don’t usually do this, but when you come in and see me, can you try to be sober. ‘That’s what she’d tell me, try to be sober. And I would try. [laughter] And sometimes it would work; sometimes it didn’t.

Similarly, participant 11 reflected that:

I remember leaving [hospital] during the afternoon, because you could leave if you were an inpatient—for a little while. And getting loaded. And coming back. Oh yeah, yeah. They wouldn’t like that. In fact I would shoot methamphetamine in my PIC line. […] But they always, and still are, they’ve always been there for me. Didn’t judge me when I was all screwed up. I didn’t ever feel like ‘oh, you’re a piece of shit person.’ I never felt that way with you guys here. Never. And it’s helped. Because it’s always been there.

For this sample, becoming sober was not based solely on advice from a physician, despite the general understanding that alcohol use is dangerous for people with HIV and HCV. Rather, becoming sober was framed as a moment of clarity. It was often an understanding that their alcohol and drug use was an avoidant coping mechanism that ultimately was not addressing their mental health conditions and was having a negative impact on other areas of their life (health, family and friends, employment, housing, etc.). While physicians were often a source of support, most participants cited an internal willpower and motivation to stop their use and stay sober.

DISCUSSION

In this qualitative study, we explored the road to alcohol recovery in 14 individuals coinfected with HIV and HCV with a history of problematic alcohol use. We identified four themes that characterized their process to achieve and maintain sobriety. These included: (1) polysubstance use, (2) sobriety as a revelation, (3) the need to organize multiple strategies for maintaining sobriety, and (4) the variable effect of an HIV/HCV diagnosis and, more generally, the influence of HIV/HCV care on recovery.

Participants endorsed alcohol and other substance use as a lifetime struggle. They rarely used a medical construct (addiction as a chronic disease comparable to heart disease or diabetes) (39) to describe their drinking. Instead, they more often used self-stigmatizing or moralizing language (40,41), even as they acknowledged that addiction is a chronic condition. Sobriety was primarily discussed as a triumph of willpower over a need or urge, and only one participant reported ever using medications for alcohol use disorder (e.g., antabuse or naltrexone). This focus on willpower and spirituality is likely reflective of the fact that a majority of participants had participated in AA or similar self-help programs which emphasize admitting one’s powerlessness over alcohol, accepting a higher power, and taking personal responsibility for one’s actions.

While participants did not become sober at the behest of their physicians, they did describe their HIV/HCV providers as a consistent source of general, non-judgmental support throughout their addiction and recovery. This finding is consistent with the findings of a larger qualitative study of non-infected individuals with comorbid substance use and mental health conditions (28). This indicates that while it is important for physicians to educate their patients and provide medical advice, it is equally important to foster a trusting, open relationship with patients and “meet them where they are at” similar to other harm reduction models. Given that most participants did not discuss medications or other medical treatments for alcohol use disorder, the extent to which these treatments are discussed in HIV/HCV care settings and the desirability and effectiveness of these treatments for this population should be explored further.

Those with HIV/HCV coinfection often have a history of having used multiple substances (42). HCV infection is primarily transmitted through injection drug use and a history of heroin, cocaine, or methamphetamine dependence is frequently encountered in this setting (43). Further, in those with significant and complex medical comorbidities, recovery from multiple substances may be particularly challenging. Coinfected persons who use drugs have increased morbidity and mortality compared to those coinfected who do not (44). This shows a potentially more complicated path to recovery than persons who use alcohol alone. Additionally, concurrent AUD and many types of substance use are associated with higher rates of mental health conditions and generally poorer health outcomes than AUD alone (45,46). Indeed, the participants in this sample described the need to address their polysubstance use and mental health conditions simultaneously, often using unique combinations of strategies to achieve and maintain sobriety.

Although all were actively engaged in medical care, many participants did not spontaneously connect their diagnoses of HIV and HCV infection with their movement toward sobriety, only speaking to this point when systematically prompted by the interviewer. In contrast to other studies that reported that physicians’ warnings about drinking can have a significant impact on continued sobriety (47) and that involvement in primary care can be predictive of improved addiction severity (48), none of these 14 participants recalled becoming sober based on advice from their physician. The lack of physician involvement, or patients’ perception about lack of involvement, suggests other routes to or understandings of sobriety may be more important for this population with complex and often competing medical and mental health needs. In the parent alcohol intervention study from which these participants were initially recruited, we found that both brief advice and motivational interviewing significantly reduced alcohol use among a similar cohort of HIV/HCV coinfected individuals (49). Together, these findings indicate the value of integrating brief alcohol interventions and/or “wraparound” case management addressing this population’s medical, mental, and socioeconomic needs into HIV/HCV care settings.

The motivation to become sober following HIV and HCV diagnoses did not consistently arise. Becoming sober was often described as a transcendent moment. In this sample, this was typically the result of a culmination of negative consequences (loss of job, divorce, homelessness, worsening physical health), and less often attached to a medical diagnosis of HIV or HCV. Social pressure was also not mentioned as a reason for quitting. In fact, for some participants, giving up their social network was a prerequisite to their sobriety. The revelatory language used by participants can likely be attributed to the complexity and multiplicity of the forces going into this lifestyle change. The accumulation of individual forces that may drive sobriety decisions has similarly been pointed out in an alcohol pre-treatment study (18) and a qualitative analysis of treatment-seeking motivations (50).

This study reinforces previous findings in the literature of sobriety maintenance. Social support, redefinition of self, religion, structure and development of other interests, skills and routines were all mentioned by participants (51) similar to studies of persons with co-occurring mental health disorders (52). Many participants spoke about the role of mental healthcare in achieving and maintaining their sobriety, specifically about a desire to understand their motivations for using alcohol and other drugs (e.g., as a coping mechanism). Further research should be done specifically with this high-risk population to explore these motivations and evaluate interventions to address them (e.g., cognitive behavioral therapy, motivational interviewing). Interestingly, when those interviewed discussed maintaining sobriety, as opposed to initially becoming sober, the support and influence of other people—partners, family, AA—was frequently, though not universally, present. The two women participants focused more on skill-building and self-sufficiency than support from partners or family, supporting research on gender differences in the cycle of addiction and sobriety (53,54). Women more often report initiating drug use through sexual and interpersonal relationships (55,56), so perhaps these relationships are seen as more negative than positive in sobriety maintenance. Gender differences in sobriety maintenance should be further explored with larger samples of women and men.

The current study has limitations. This study was not designed or powered to assess motivations or strategies for becoming sober, but rather paints a broad picture about the complexities of addressing alcohol use among this understudied population, providing context and directions for future research. Participants represented a convenience sample recruited from a clinic at an urban safety-net hospital and often had competing medical and socioeconomic needs beyond their coinfection such as homelessness and other substance use. As with many qualitative studies, generalizability is limited by our small sample size and limited racial, ethnic, and gender diversity. Women and racial and ethnic minorities have different experiences with alcohol use initiation, becoming sober, and sobriety maintenance (57). Furthermore, the fact that most of these participants were engaged in medical care throughout their addiction and recovery limits generalizability. Further research is necessary to understand the recovery trajectories of individuals with HIV/HCV who are less connected to the healthcare system. We did not perform diagnostic interviews with participants and so cannot confirm self-reported alcohol use disorder diagnoses, nor did we systematically explore history of formal alcohol treatment or short-term inpatient detoxification program entry, although these were mentioned by participants during interviews. Finally, it would have been informative to learn more about important others in these participants’ lives: family, partners, and children.

CONCLUSIONS

Qualitative research in the form of unstructured interviews provides unique insights by allowing the participants to tell their stories in their own words and enabling researchers to find hidden meaning and themes through an inductive process. We found that clinical providers had little influence in the initiation or maintenance of sobriety for this population and many in this population had a complicated history with other substances besides alcohol. Attention to the themes that arose in these participant-driven interviews such as the use of substances besides alcohol, sobriety as a revelation, and the need to organize strategies for maintaining sobriety right from the start, may inform novel, nuanced interventions for heavy-drinking persons with HIV/HCV coinfection, and other complex populations.