“Cooling of the mind”: Assessing the relevance of mindfulness training among people living with HIV using alcohol and other substances in South Africa

Abstract

Rationale:

“Thinking too much” is a cultural idiom of distress identified across sub-Saharan Africa, including among people living with HIV (PLWH), which is associated with depression, substance use, and HIV medication nonadherence. Despite the relevance of mindfulness training to address thinking too much, improve HIV-related outcomes, and reduce substance use, efforts to adapt mindfulness training for this context and underserved populations more broadly have been limited.

Objective.

We explored in this context: (a) the experience of thinking too much among PLWH struggling with adherence and substance use; (b) the appropriateness of mindfulness training to address thinking too much; and (c) potential barriers and facilitators to implementing mindfulness training.

Method.

We conducted semi-structured interviews with patients (n = 19) and providers (n = 11) at two clinics in a peri-urban area of Cape Town. Guided by the ADAPT-ITT model, we included an experiential mindfulness practice and participants shared their observations and descriptions of the intervention in the local language (isiXhosa).

Results.

Participants found mindfulness relevant, culturally salient, and appropriate for refocusing the mind. Findings provide unique language offered by participants to tailor mindfulness training in the future (e.g., “hearing your veins,” “cooling of the mind”). Participants identified potential implementation barriers, including lack of privacy, and facilitators to guide future adaptations.

Conclusions.

More research is needed to adapt and increase access to mindfulness training in resource-limited settings globally, while also maintaining treatment integrity and fidelity.

1. Introduction

“Thinking too much” is a transdiagnostic and transcultural manifestation of psychological distress that is common in African countries (Kaiser et al., 2015). People living with HIV (PLWH) in sub-Saharan Africa (SSA) have described thinking too much as part of their experience of distress living with HIV (Davies et al., 2016; Andersen et al., 2018). Processes related to thinking too much, including worry and rumination, have been associated with depression, anxiety, substance use, and medication nonadherence in SSA (Kidia et al., 2015; Siziya et al., 2009). In settings where thinking too much may be recognized as a common experience of distress, and mental health stigma is high, an intervention that assists with thinking too much may be relevant and acceptable.

Mindfulness, a form of awareness that involves intentionally paying attention to present moment experiences in an open, curious, and non-judgmental way (Bishop et al., 2006; Kabat-Zinn, 2005) has gathered significant empirical support for its effects on rumination and worry, constructs that overlap with thinking too much (Chiesa et al., 2011; Querstret and Cropley, 2013). By promoting cognitive-decentering, the ability to experience thoughts as transient mental events rather than facts that need to be believed or acted upon (Shapiro et al., 2006), mindfulness training can interrupt repetitive thought processes. In contemporary clinical contexts, mindfulness practice has been integrated into clinical interventions for stress reduction (Kabat-Zinn, 1982), depression (Segal et al., 2012), and substance use (Witkiewitz et al., 2005). Mindfulness training has been shown to improve health outcomes for PLWH, including reducing distress, improving quality of life, increasing acceptance of one’s HIV status, and improving antiretroviral therapy (ART) adherence (Creswell et al., 2009; Duncan et al., 2012; McIntyre et al., 2018; Riley and Kalichman, 2015; Robinson et al., 2003; Salmoirago-Blotcher and Carey, 2017; Scott-Sheldon et al., 2019). Reductions in repetitive thinking and cognitive reactivity are potential mechanisms through which mindfulness training may affect health and substance use-related outcomes (Kerrigan et al., 2018; Witkiewitz et al., 2005). Further, in resource-limited communities where poverty, trauma, and chronic stress are pervasive, an emphasis on acceptance versus change may be appropriate (Moitra et al., 2011). In SSA, preliminary evidence suggests mindfulness training may be culturally fitting and appealing given parallels with traditional prayer rituals and cultural practices, and applicability to thinking too much (Jalal et al., 2017). However, there has been limited research in SSA to understand the role of thinking too much in relation to substance use, and how mindfulness training may be applicable and/or adapted to reduce substance use and improve ART adherence among PLWH in this context.

The current study aimed to explore: (1) patient and provider perspectives on the role of thinking too much concerning substance use among PLWH; (2) the appropriateness of mindfulness training to address thinking too much among PLWH; and (3) potential barriers and facilitators to implementing mindfulness training in HIV care in SSA.

2. Method

2.1. Setting and recruitment

This study took place in South Africa, which has the highest number of PLWH globally (over 7.7 million; UNAIDS, 2019). Patients and providers were purposively sampled from two public primary care sites in Cape Town. Patients were referred by HIV care providers or from a co-located substance use treatment center at one of the clinics, and screened by a field worker to determine study eligibility. Patients were eligible if they were: 1) HIV-positive; 2) on ART and had one or more indicators of poor ART adherence in their chart (i.e., either having a detectable viral load, being re-initiated on first-line treatment, or being on second line treatment); 3) reporting at least moderate substance use (score 4–26 on the WHO-ASSIST, 2002); 4) fluent in English or isiXhosa; and 5) 18–65 years old. Providers delivering HIV or substance use services were identified by the medical officer and/or director at each site and purposively sampled across roles.

2.2. Procedures

Interested participants provided informed consent, including for audiorecording. All interviews lasted approximately 1 h and took place in private rooms at the clinics between October 2016 and February 2017. Participants received a grocery voucher (150 ZAR; ∼11 USD) for participation. Recruitment sites were approved by the City of Cape Town Health Department. All study procedures were approved by the University of Maryland Institutional Review Board (IRB), Partners Human Research Committee and the University of Cape Town Health Sciences Faculty Human Research Ethics Committee.

Patient and provider interviews followed separate semi-structured interview guides. We assessed: (a) the role of thinking too much in relation to substance use among PLWH; (b) the appropriateness of mindfulness training to address thinking too much among PLWH; and (c) barriers and facilitators to implementing mindfulness in HIV care. Following the ADAPT-ITT model of intervention adaptation (Wingood and DiClemente, 2008), we sought feedback on mindfulness training using a theatre-testing approach to pretest intervention components; participants were introduced to a short mindfulness exercise (5-min breath meditation) guided by the interviewer in real-time (see Appendix). Participants were queried after on their observations and experience, including how patients would describe it in isiXhosa, and the perceived acceptability, feasibility, and appropriateness of this type of approach. As part of their training, qualitative interviewers were supported to engage in their own mindfulness practice, including practicing the brief exercise they delivered in the interview. Research assistants were trained and supervised in how to query participants’ experiences following the exercise.

Provider interviews were conducted in English, except for one CHW who preferred isiXhosa. Patient interviews were conducted in isiXhosa. Interview recordings were translated and transcribed into English. The meditation was translated into isiXhosa and back translated. An expert in mindfulness (CL) reviewed the translation for accuracy. For all participants, demographic information and prior familiarity with mindfulness was assessed. Among patients, prior substance use history and whether they owned a cell phone were assessed (to determine feasibility of technology-facilitated mindfulness practice in future trials). For providers, role type and years of experience were assessed.

2.3. Data analysis

Transcripts were analyzed with thematic analysis, using NVivo v.11 for data management. Two coders independently coded all transcripts. A combined codebook was used for patient and provider interviews to facilitate integration of data across patients and providers. To develop the combined codebook, the two independent coders open-coded the first five interviews (for both patients and providers). The codebook included higher-order codes, sub-codes, and definitions arrived at through consensus. Within the combined codebook, some codes were distinct for patients versus providers. When concepts emerged that did not fit into the original codebook, the codebook was adapted and interviews were re-coded using the modified codebook. Coders resolved discrepancies by discussion during weekly meetings; a third person arbiter was not needed. After final inter-coder reliability checks, the coders obtained a Kappa score >0.80.

3. Results

3.1. Participants

Of the 19 patients (median age = 41, IQR = 33–46), 58% were female and 100% were Black African. Seventy nine percent were recruited from HIV care (n = 15), and 21% recruited from the co-located substance use treatment program (n = 4). Patients’ primary substances were alcohol and cannabis use. Of those who reported alcohol use (n = 18), 50% were in the moderate severity range (WHO ASSIST≥11). Of those who reported cannabis use (n = 8), 37.5% were in the moderate severity range (WHO ASSIST≥4). None of the participants recruited from HIV care had received prior substance use treatment. Sixty-three percent of patients (n = 12) owned a cell phone. The majority of patients (95%; n = 18) were not familiar with mindfulness prior to the interview.

Of the 11 providers (median age = 44, IQR = 36–52), 82% were female (n = 9), 73% were Black African (n = 8), and 27% (n = 3) were White. Providers’ roles were: HIV adherence counselor (n = 1), HIV/TB nurses (n =3), physician/clinical medical officers (n = 2), CHWs (n = 2), substance use treatment director (n = 1), and addictions counselors (n = 2). Providers had a median of four years of experience in their roles, and a median of 11 years career experience overall. Table 1 presents the key themes by aim, which are elaborated upon below.

Table 1.

Key themes by aim.

Aims	Key Themes
1. The role of thinking too much in relation to substance use among PLWH	Substance use was an escape from:
	General and HIV-related distress
	Repetitive distressing thoughts
2. Appropriateness of mindfulness training in this context	Mindfulness practice was seen to be:
	Appropriate and culturally salient
	Described in isiXhosa as:
	“A prayer kind of an exercise”
	“Gathering of mind”
	“Cooling of the mind”
	“Something that brings health” and “relief”
3. Barriers and facilitators	Barriers
	Lack of privacy
	Impatience among patients and providers
	Facilitators
	Incorporating calming sounds Practicing in other settings (e. g., nature)
	Implementing reminders

3.1.1. Aim 1: thinking too much in relation to substance use among PLWH

Participants described thinking too much being associated with substance use. An HIV Clinic Patient (P1) remarked,

“What makes me use alcohol? It’s stress. I am always thinking.”

A patient recruited in substance use treatment (P2) also reflected this sentiment:

“I was using that stuff [petrol/glue] as something that sets my mind free … So that I don’t think about stuff.”

Patients described turning to substance use as an escape from thoughts related to HIV-related distress:

“Sometimes it’s because … you don’t want to be worried all the [time] because of ‘Well, I’m HIV positive.’” (P3)

Providers reflected patients’ HIV-related distress and how thinking too much contributes to substance use. A CHW [HIV Provider (H1)] commented:

“Thinking too much is the main reason they always mention … In their mind, they have that mentality if they drink, all the problems will vanish away unaware that when alcohol is finished in the body, the thoughts will still be there.” (H1)

3.1.2. Aim 2: Appropriateness of mindfulness training in this context

Although most patients were not familiar with mindfulness, once defined, one participant described having his own meditation practice: “I often do it when I lie down at home with my eyes closed” [HIV Clinic Patient (P4)]. After participating in the meditation and describing their experience, other patients previously unfamiliar with mindfulness easily identified isiXhosa terms to describe the exercise, demonstrating cultural salience. Descriptions included: “a prayer kind of an exercise,” “gathering of mind”, “cooling of the mind”, “something that brings health”, and “relief”. By describing sensory reactions, patients demonstrated that they were directly observing rather than thinking about their experience. One patient remarked, “I could hear my veins” (P4).

Participants elaborated on how practicing mindfulness helped them re-shift their focus from worry-related thoughts to the present moment. One patient described the benefits of mindfulness as:

“To stop thinking about things that are far away from you, you see? You [then] think of things that are next to you … to stop thinking about the last things.” [HIV Clinic Patient (P5)]

Providers also reacted positively to the exercise. H1 responded,

“The way I hear it, a person with stress can be relieved, because I felt in me, it was like a load has been removed from my shoulders … But as I keep on breathing, I feel something going away.”

The same CHW described the exercise as a feasible way to address patients’ stress:

“The nice thing about this [for patients] is that you can do it at home, do you understand, yes, because they always complain of stress and boredom.” (H1)

A substance use treatment provider expressed the potential for mindfulness to keep patients from thinking too much. This provider commented:

“If your mind is wandering around … then focusing on your breath, you stop thinking. I mean the thoughts of using are being distracted because now you are focusing on what is happening with your breathing” [Substance Use Provider (H2)].

Another provider emphasized why mindfulness would be feasible and acceptable for patients, describing how when patients occupy their time with activities, they do not always step back to re-focus their thoughts away from substance use or identify activities that fully occupy their minds:

“A lot of the patients are doing stuff to stay busy, so when they actually do this, it’s very often the first time they focus like this. They find it very relaxing and enjoy it. For a lot of patients, it is very feasible, because it doesn’t require anything. And for patients that are stuck with situations where they have nothing to do, this is something that anybody can do. With practice, a lot of the patients will get better, they feel relaxed …” [Substance Use Provider (H3)]

3.1.3. Aim 3: Barriers and facilitators to implementing mindfulness in HIV care in South Africa

Participants described potential implementation barriers to mindfulness practice. Some patients mentioned a lack of privacy at home, while providers worried that patients may be too anxious or impatient to practice mindfulness. One provider noted that patients may find it challenging to sit with the discomfort that they seek to alleviate with substances: “the ones to self-medicate with things like alcohol …. they will be your more anxious type patients that struggle” (H4). This provider elaborated that while patients may struggle to calm their minds, providers may also lack the patience to teach mindfulness.

Other providers noted that mindfulness would be feasible and acceptable among patients, and patients expressed interest in addressing stress and “cooling” their minds. Provider participants offered recommendations to improve the feasibility and acceptability of the practice. For instance, multiple providers suggested incorporating calming, soft sounds into the exercise:

“I’m not sure whether, like kind of a melody would distract them but maybe that could also bring them in the present, that kind of focus …” (H2).

To address space barriers, another provider suggested going to a nearby park to teach mindfulness and improve patients’ engagement. Finally, one patient participant reported that it might be difficult to remember to practice mindfulness regularly and suggested that having someone to practice with or remind them to practice would increase feasibility.

4. Discussion

This study provides preliminary evidence for the appropriateness and cultural salience of mindfulness training among PLWH in South Africa who are struggling with HIV-related self-care and substance use, and identifies potential barriers and facilitators to implementation in this context. Our findings suggest that patients may use substances as a way of coping with distressing thoughts associated with HIV and that mindfulness may be appropriate for refocusing the mind. Study findings provide unique language offered by the patients and medical staff to describe mindfulness practice. This language (e.g., “listening to your veins”) can be used to tailor mindfulness training in the future. Despite participants reporting the relevance of mindfulness, participants also noted implementation barriers, including lack of privacy, and provided suggestions for improving acceptability and feasibility.

Through its focus on acceptance and equanimity (e.g., mental stability and balance, regardless of the valence of an event; Desbordes et al., 2014), mindfulness can support individuals to disconnect from repetitive and/or distressing thoughts and engage more fully and deeply in their lives. A focus on acceptance and equanimity may be particularly relevant in the context of poverty, trauma, and chronic stress within resource-limited communities (Moitra et al., 2011). In South Africa, recipients of a trauma-informed substance use intervention that incorporated mindfulness reported that these activities helped them manage sadness and substance use craving (Myers et al., 2019).

Despite the benefits of mindfulness training, there may be unique implementation challenges in this context, for which participants provided potential solutions. To address lack of space or privacy in the home, informal practices (e.g., awareness while tea drinking or walking) can be useful. These informal practices may be more appropriate for patients who struggle to sit with discomfort and anxiety, as one provider noted. Reminders, whether through direct provider interaction, peer support or coaching, may also be integrated. Providers should incorporate a discussion of potential implementation barriers when introducing mindfulness training and work collaboratively with the patient to identify potential solutions. Finally, we also acknowledge that mindfulness may not be appropriate for some. Distressing cognitive, emotional, and perceptual changes have been shown to occur in up to 25% of individuals, many of whom have prior trauma (Lindahl et al., 2017; Van Dam et al., 2017). In addition to informal practices, recommendations include offering choices for focus points, keeping practices brief, incorporating movement, keeping eyes open, and, as suggested by a provider, conducting practices in nature to focus on external sensory experiences (e.g., sights or sounds; Treleaven, 2018).

Despite preliminary efforts to study mindfulness in SSA (Busari, 2015; McIntyre et al., 2018; Myers et al., 2019), one substantial challenge is the shortage of mental health providers. While training lay health workers has been successful in SSA for other evidence-based behavioral interventions, such as cognitive behavioral therapy (CBT; Andersen et al., 2018; Magidson et al., 2017), there are unique qualifications for teaching mindfulness, including an expectation of one’s own personal practice to draw from. In other settings, lay health workers (i. e., promotoras) have delivered mindfulness interventions, showing improved mental health of both participants and the promotoras (Tran et al., 2014). As one provider in our study described feeling “like a load has been removed” from her shoulders, care workers may experience reductions in burnout by adopting their own practice. The qualitative interviewers who were previously naïve to mindfulness also reported personal benefits of the mindfulness training and described continued practice.

Technology may facilitate dissemination in contexts with limited access to trained mental health providers and support the transition from in-person, provider-led to self-guided practice. Almost two-thirds of patients in this study reported owning a cell phone, indicating technology-facilitated practice or reminders may be feasible for some (potentially using an MP3 file; McIntyre et al., 2018). Evaluating the feasibility and acceptability of technology-facilitated practice is an important future direction.

4.1. Limitations and future directions

Given participants were only briefly introduced to a mindfulness exercise, feedback does not reflect engagement in a comprehensive, structured mindfulness intervention. However, by exposing a previously unfamiliar population to mindfulness, we were able to gauge initial reactions to inform adaptations. Finally, we only included a limited number of each provider type, and provider-level feedback may not be reflective of other specialties.

5. Conclusions

Study findings provide unique language offered by patients and providers that can be used to tailor mindfulness training. Future work will assess the feasibility and acceptability of mindfulness delivered by a lay counselor in a subsequent clinical trial to improve substance use and ART adherence (Magidson et al., 2020). Although we focus on South Africa given the high burden of HIV and substance use, our ultimate aim is to make mindfulness more accessible in resource-limited settings globally, while also maintaining attention to treatment integrity and fidelity (Crane, 2017).