Developing a male-specific counselling curriculum for HIV treatment in Malawi

Step 1. Scoping review on men’s specific needs for ART engagement

We first conducted a scoping review of published, grey and white literature from southern and eastern Africa to identify facilitators and barriers to men’s engagement in the HIV cascade, prioritizing findings from Malawi. We conducted a search on Google Scholar and reviewed documents on men’s HIV care from stakeholders including UNAIDS, WHO and PEPFAR.^18,19 The process was guided by three primary questions: what are male-specific 1) barriers, 2) facilitators, and 3) knowledge gaps affecting ART (re-) initiation and retention.

Step 2. Review MoH ART counselling materials against men’s specific needs identified in step 1

We used findings from step 1 to identify areas in the existing MoH ART counselling curriculum where the specific needs of MLHIV identified in the scoping review were not adequately addressed. First, the lead author (MM) entered MoH counselling content by topic into an Excel data capture tool. For each topic, we entered data on the following categories: 1) What was the main message; 2) How did the content (subject, wording, structure, graphic) meet (or miss) male-specific needs; 3) What evidence supported this assessment from the scoping review; and 4) if gaps were identified, what (if any) content was supported by evidence in the scoping review (i.e. specific wording, messaging, graphics, etc.). Co-authors (KD, JH, IR) independently reviewed and gave feedback until we reached consensus on all categories.

Step 3. Adapt MoH counselling materials based on steps 1 and 2

We adapted the MOH curriculum based on the finalized data extraction and assessment conducted in Step 2. Local Malawian team members drafted changes and/or additions to curriculum and entered these into the same Excel data capture tool. All initial adaptations were reviewed by co-authors and underwent multiple iterations. We used four in-person meetings to promote discussion and consensus building. Upon reaching consensus, the adapted curriculum was extracted from the data capture tool and formatted into a small, flip-chart style job aid for health care worker (HCW) and client use during counselling sessions, following standard formatting for counselling curriculum in Malawi. The draft male-specific counselling curriculum was translated into the local language and male-specific graphics were created by a local graphic designer.

Step 4. Pilot adapted curriculum with men

We piloted the adapted draft male-specific counselling curriculum with 86 men of unknown HIV status between 14-18 December, 2021. We recruited men through convenience sampling from six villages in central (n=3 villages) and southern (n=3 villages) regions of Malawi. Men were eligible to participate if they 1) resided in the village and 2) were ≥15 years old. The counselling curriculum was presented in a group counselling format by two trained Research Assistants, followed immediately by Focus Group Discussions (FGD). FGDs assessed men’s post-counselling knowledge of ART, motivators and barriers to care, and perceptions of the adapted male-specific curriculum. Participants were asked if the adapted curriculum was relevant to their lives and their motivations as men. They were asked to identify any topics in the curriculum that were unclear or did not motivate them, and to raise any additional needs or questions they still had about HIV services. They were also invited to suggest any further modifications including specific language and graphic choices to fit the local context. FGDs were conducted in the local language (Chichewa), translated to English, transcribed, and analyzed in Atlas.ti8²⁰ using grounded theory.²¹ Participant responses were reviewed, main themes summarized, and the curriculum further modified to incorporate feedback. Verbal informed consent was obtained prior to the interviews. We administered verbal consent to minimize risks generated by written consent. This was approved by the ethics board prior to data collection.

Step 5. Review of finalized curriculum

The male-specific ART counselling curriculum was reviewed by two groups: programmatic stakeholders (implementers and researchers) in Malawi and HCWs (nurses and lay cadre treatment supporters) who would implement the new curriculum.

Stakeholders: In a one-day stakeholder workshop, the updated male-specific counselling curriculum flip-chart and artwork were presented to PEPFAR implementing partner staff (n=5) and HIV researchers (n=6). Participants reviewed the content (including topics, analogies, wording, and graphics) to ensure the curriculum complied with MOH guidelines for HIV counselling and assess the curriculum’s feasibility and acceptability among stakeholders. The curriculum was then modified based on consensus.

Implementers: Finally, male nurses (n=10) and a lay cadre (treatment supporters, n=10) were trained in the new curriculum and invited to provide further modifications to improve clarity and implementation. The training took place over a five-day period and all modifications were agreed upon by consensus. Final edits were made prior to implementing the male-specific counselling within the parent trials.

Step 6. Implement the final adapted male-specific counselling curriculum

The final male-specific curriculum was implemented as part of two randomized control trials (IDEAL and ENGAGE). Results of the implementation will be described in in the trials’ primary outcome papers.

Step 1: Scoping review on specific needs of men for ART engagement

We identified eight overarching male-specific barriers and facilitators affecting men’s ART re-initiation and retention ( Table 2). First, men wanted to be treated as equals with HCWs, valuing respect and autonomy over care.^11,22 Men responded poorly to shouting or conflictual interactions with HCWs, or counselling sessions in which they were simply given instructions without being given motivational explanations or choice.^23–25 Men wanted to have interactive counselling sessions, and to be treated as equal participants in their own health care.²⁵ They needed to have a sense of ownership and agency over their own health.¹⁶ Without positive interactions with HCWs, men often opted to avoid services altogether in order to maintain respect and autonomy.²²

Second, extensive literature framed men as the economic pillar of the household.^26,27 Bearing the responsibility for income generation was both a barrier and facilitator for men, particularly in the context of poverty. Income generation acted as a barrier because men had to interrupt treatment due to travel for work^5,28,29 and conflicts between clinic and work schedules.^11,30 Failing to provide for their families was widely interpreted as a weakness, directly undermining men’s internalized (and socialized) expectations of masculinity.²⁷ However, income generation could also act as a facilitator to men using ART services, as men could clearly see how ART contributed to their earning potential and ability to provide for their families.^31–33

Third, men were motivated by maintaining their own health.^31,34 Health was important from several perspectives: good health allowed men to keep their HIV status private from community members, maintaining their reputation in the community. Good health was also associated with a strong physical appearance which increased men’s options for sexual partners.^27,35 Finally, physical strength and vitality were seen as directly influencing men’s earning potential, key to their current and future role as provider for their family.^2,7,35,36

Fourth, the gendered organization of HIV services means that men are less familiar with health facility protocols and strategies to overcome facility-level barriers to care.²⁵ Men often reported difficulties navigating health facilities, especially as the majority of services provided at facilities is designed for women and children.^7,16,37,38 Many men preferred to be offered HIV services by male HCWs, and studies have found that gender-sensitive services can facilitate men’s service utilization.²⁷

Fifth, men had limited knowledge about ART services.^5,36,39 Men were still largely unaware of Treatment as Prevention (TasP) and the benefits of early ART initiation,⁵ and had limited understanding about drug doses and how HIV and ART work within the body. Men over-estimated the risk of severe side effects when taking ART, leading to concerns that ART would undermine their health. Men were also concerned that such side effects might impact their physique, a key barrier for men’s slow uptake of ART services.^40,41 While side effects are rarely experienced with new dolutegravir-based regimens,^42,43 the legacy of side effects due to old regimens (such as nausea, bad dreams, and fat deposits) still informs men’s fears of treatment today.⁴⁴

Sixth, social support from family members or male friends was critical to men’s sustained retention in ART services. Fear of disclosure of one’s status and the subsequent anticipated stigma is a common reason for defaulting from ART.¹¹ Recent studies suggest that having a male role model who has successfully engaged in ART and is thriving in care may be particularly motivating for men.^25,30,45

Seventh, studies found that self-compassion with life-long treatment resulted in better adjustment and lower stress, anxiety and shame.^32,46 Self-compassion facilitates HIV status disclosure, encouraging clients to practice safe sex and seek medical care.⁴⁶ We defined self-compassion as being able to acknowledge the struggles one faces and celebrate the small gains achieved along the journey. However, men may have limited self-compassion as harmful gender norms define men as being strong and self-sufficient, and never being weak.^27,32 Self-compassion with lifetime treatment may help alleviate fears that prevent some men from ever starting treatment and may remove the feeling of being overwhelmed by treatment.

Finally, the literature highlights the huge role of masculinities in men’s engagement in treatment, which needs further exploration.^5,27,47 A meta-analysis found that beliefs about masculinity may influence treatment outcomes.⁴⁸ For example, in South Africa, men considered being tough, unemotional, aggressive, denying weakness, sexually unstoppable and appearing physically strong as important male traits.^27,32 These masculinity constructs are likely to prevent some men seeking health care services.^26,32,39

Step 2: Review MoH counselling materials for gaps in reaching men

We found that the MoH ART counselling curriculum was didactic and directive. The curriculum was largely biomedical-focused, explaining what ART does and the need for adherence, but not explicitly linking how ART can contribute to individuals’ goals and needs (see Tables 3a and 3b for the completed data capture tool). The curriculum did not provide explicit probes needed to facilitate interactive or client-centered counselling. The MoH curriculum did not address many of the specific barriers and facilitators experienced by men.

There was little consideration of ART in relation to men’s overarching goals and fears. Another gap in the curriculum was the limited discussion on social support. Lastly, the curriculum presented a strict approach to ART adherence, without explaining that missed doses could be taken subsequently and did not include any information about self-compassion while navigating lifelong medication, or any Welcome Back messaging for individuals who may fall out of care in future. Based on this assessment, multiple messaging and graphic changes were suggested.

Step 3: Adapt MoH counselling materials

The draft counselling curriculum adapted to male-specific needs included four new themes and three modified themes ( Tables 3a, 3b & 4). Key messaging included ART as a way for men to regain health, provide for their families, maintain their role within their community, and have self-compassion with their own ART adherence and facility attendance as life is complicated and lifelong adherence can be difficult.

The counselling curriculum was printed on a small, flip-chart job aid. In developing this, the artist featured a central male character. The character was intended to be relatable as a Malawian man and a role model figure. He was strong and clean but simply dressed like a wealthy man living in the village, and middle-aged (indicated by a few grey hairs). The male character was depicted in various scenarios that were identified as motivating in the scoping review. For example, being healthy and providing for one’s family were depicted through the image of the main character farming and looking strong.

Step 4: Pilot modified male-specific counselling curriculum

In piloting the male-specific counselling curriculum, men believed that the new curriculum directly connected with what they cared about: their families’ well-being and their role as provider.

Men appreciated the fact that the new counselling was interactive and solicited men’s voices, and contrasted this experience with the directive and authoritarian counselling styles to which they weare accustomed. Men did not like the classroom approach of standard counselling and wished to be fully informed and involved in interactive discussions and decision-making about their health.

Men reported numerous curriculum topics that they found motivating. Most men were unaware of TaSP and were highly motivated by the fact that taking ART meant that men living with HIV could have HIV-negative children.

Men were also motivated by hearing that the new ART regimen (dolutegravir) had reduced side effects. Prior to the counselling, many men still associated ART with serious side effects that could inhibit work and income generation, especially if taken while a man was still healthy. Most men believed that the advances of dolutegravir, including reduced side effects and drug toxicity, needed to be thoroughly communicated to men in the community to improve men’s acceptance of treatment.

Men were also largely unaware that there was any flexibility about the time when they took ART. Most men believed that there were very strict timelines for taking daily doses. They were unaware that if they missed a dose, they could still take their dose within 12 hours. This flexibility was important because it helped men feel like they could reach “good enough” adherence without having to restructure their lives around taking HIV treatment, making adherence attainable for busy men with competing priorities.

Men had several suggestions to further refine the curriculum. First, they suggested that local analogies and popular phrases be used throughout the curriculum so that men could easily relate to the topics. For example, in the topic “taking ART while healthy” men suggested using the analogy of a house that is slowly being attacked by termites (the virus in a healthy body), which, if not treated in time, will fall completely (the development of the stage of AIDS). For the topic, “Lifelong treatment”, they proposed an analogy of the persistence of a grasshopper which slowly hops (small gains day by day) to cover long distances (see Figure 1).

Figure 1. Slides on Taking ART while healthy and Self compassion topics.

Men also desired graphics throughout the counselling job aid that included men they could relate to ( Figure 2).

Figure 2. An image showing men as pillars of the society and homes.

Based on the FGD’s, the curriculum was further adapted, with an increased emphasis on TasP, reduced side effects of the new ART regimen, ART ability to support men’s overarching goals, and the inclusion of local analogies and graphic visualizations of relatable men.

Step 5: Stakeholder review of finalized curriculum

Stakeholders and implementers made further small modifications to content and graphics. Both stakeholders and implementers were concerned about the emphasis on TaSP, fearing that it may increase risky sexual behavior. After multiple rounds of discussion, we minimized TaSP messaging and removed language that did not explicitly encourage condom use. A near-final version was reviewed with facility and program staff, nurses and lay-cadre.

Step 6: Final product and implementation strategies

The final product was a 17-topic counselling pamphlet. The counselling materials included a script for every topic with key bullets to guide HCWs, and probes that promoted client-centered approaches to counselling, including open-ended questions and motivational explanations for how the topic may help men achieve their life goals ( Figure 3).

Figure 3. An example for the final product page that contained probes and open ended questions.