Using Synthesised Narrative Exploration to generate contextually grounded insights for HIV prevention, testing and care programming in Mozambique

This paper demonstrates how the Synthesised Narrative Exploration (SNE) approach, which integrates existing literature with local qualitative validation, efficiently generated contextually grounded insights on barriers and strategies for HIV prevention and care among women and children in Mozambique to inform more effective programming.

The Gist

Imagine you are trying to fix a leaky boat (the HIV care system) in a specific village. Usually, to find the leaks, you might hire a team of divers to spend months underwater inspecting the hull, or you might just look at old maps of other boats to guess where the holes are.

This paper describes a smarter, faster way to do it called Synthesised Narrative Exploration (SNE). Think of it as bringing the old maps to the village elders and asking, "Does this match what you see on your boat today?"

Here is the story of how they did it and what they found, explained simply.

The Method: The "Map and Mirror" Approach

Instead of starting from scratch, the researchers took all the existing research about HIV in Mozambique (the "Maps") and turned them into short, easy-to-read stories. They then gathered 83 local people—mothers, fathers, teenagers, and community leaders—and held a "mirror session."

They showed the stories to the community and asked: "Is this true for you? Where does it fit? Where does it miss the mark?" This allowed them to combine hard data with real-life wisdom quickly, without needing a massive new study.

The Journey: Three Stops on the Road to Health

The researchers looked at the journey of a woman and child through three stages, like stops on a train line.

Stop 1: Before the Baby Arrives (The Pre-Pregnancy Station)

The Map said: Women often don't get tested for HIV until they are already pregnant.
The Mirror showed: This is true, but here's why:

• The Fear of the "Bad News": Couples are terrified to test together. If one person is positive and the other is negative, they fear the positive partner will be blamed for cheating, leading to fights or divorce. So, they avoid the test entirely.
• The "Secret Pill" Struggle: Women who know they are HIV positive often hide their medication. They might throw the pills away on the way home so their husbands don't see them, or they skip doses to avoid suspicion.
• The Empty Stomach Problem: Many families only eat one big meal a day. Taking HIV medicine on an empty stomach makes you feel sick, so people skip it until they can eat.

Stop 2: During Pregnancy (The "Baby Shield" Station)

The Map said: Pregnant women finally start coming to the clinic, but they often come late.
The Mirror showed:

• The "Baby Excuse": Pregnancy is the only time society accepts a woman going to the clinic repeatedly. It's a "socially acceptable" reason to leave the house.
• The Mother-in-Law Factor: This was a big surprise. The study found that mothers-in-law hold a lot of power. Some believe HIV medicine is bad for the baby or that the daughter-in-law brought the disease into the family. They can pressure women to stop taking medicine or even kick them out of the house.
• The Husband's Absence: Men often don't go to the clinic with their wives. They fear being mocked by friends for being "controlled" by their wives, or they are afraid of the HIV test itself.

Stop 3: After the Baby is Born (The "Leak" Station)

The Map said: Once the baby is born, mothers often stop going to the clinic, and the baby stops getting tested.
The Mirror showed:

• The "Justification" Vanishes: Once the baby is born, the "social excuse" to go to the clinic disappears. If a woman hasn't told her family she is HIV positive, how do you explain why you are going to the clinic every month? You stop going to keep your secret.
• The "Baby is Safe" Myth: Many mothers think, "I took the medicine to protect the baby during pregnancy, so now the baby is safe." They don't realize the baby still needs testing, or that they still need medicine to stay healthy.
• The Fear of the Test: Parents are terrified to test their babies because if the baby is positive, the whole family will know the mother has HIV. So, they wait until the baby gets visibly sick before testing.

The Solution: What the Community Said

The people in the study didn't just list problems; they offered solutions, like a community brainstorming session:

1. Bring the Men In: Men need to be part of the conversation about family planning and HIV, not just bystanders.
2. Talk to the Mothers-in-Law: Programs need to educate the grandmothers and mothers-in-law, as they are the gatekeepers of the household.
3. Couple Counseling: Create safe spaces for couples to talk about HIV and pregnancy without fear of judgment.
4. Keep the "Baby Excuse" Alive: Even after the baby is born, find new, socially acceptable reasons for mothers to keep coming to the clinic so they don't feel isolated.

The Big Takeaway

This paper teaches us that you can't fix a health problem just by building better clinics or handing out more pills. You have to understand the social ecosystem.

Think of HIV care not just as a medical treatment, but as a dance. If the music (social norms, family pressure, fear of stigma) is wrong, the dancers (patients) will stop dancing, no matter how good the shoes (medicine) are. By listening to the community and combining it with what we already know, we can change the music so everyone can keep dancing safely.

Technical Summary

1. Problem Statement

Despite significant progress in HIV service delivery in Mozambique, substantial gaps remain in the Prevention of Mother-to-Child Transmission (PMTCT) and pediatric HIV care cascades. Key issues include:

• Low Pre-pregnancy Engagement: Limited preconception HIV testing and low Antiretroviral Therapy (ART) uptake among women before pregnancy.
• Service Gaps: Delayed initiation of antenatal care (ANC), suboptimal retention in care during and after pregnancy, and poor early infant diagnosis (EID) uptake.
• Knowledge-Action Gap: While service-level and behavioral barriers are well-documented in literature, there is insufficient understanding of how local social norms, family power dynamics, and health system realities specifically shape care-seeking behaviors and disclosure practices in rural settings.
• Methodological Limitations: Traditional primary data collection is resource-intensive and time-consuming. Conversely, rapid assessment methods often lack the depth to explore complex social mechanisms and lived experiences.

2. Methodology: Synthesised Narrative Exploration (SNE)

The study employed the Synthesised Narrative Exploration (SNE) approach, a qualitative research method designed to integrate existing empirical evidence directly into community engagement.

• Study Setting: Jangamo and Massinga districts in Inhambane province, southern Mozambique (rural communities with limited health access).
• Theoretical Framework: An adapted Socioecological Model (SEM) combined with the maternal and child health continuum (pre-pregnancy, pregnancy, postpartum).
• Data Synthesis Phase:
  • A structured literature review identified 16 peer-reviewed studies and 2 national reports (2010–2020) regarding HIV barriers in Mozambique.
  • Findings were synthesized into concise, accessible narrative summaries (not statements of fact) covering key thematic domains.
• Qualitative Data Collection (July 2021):
  • Participants: 83 individuals (64 in 11 Focus Group Discussions and 19 in Semi-Structured Interviews).
  • Demographics: Diverse mix including women/men living with HIV, adolescents, community leaders, healthcare providers, and civil society representatives.
  • Process: The synthesized narratives were presented to participants to validate, refine, or challenge the existing evidence. Participants discussed how these findings applied to their local context, revealing underlying mechanisms.
• Analysis: Thematic analysis was conducted using NVivo 12, coding data against the conceptual framework while allowing for inductive emergence of new themes.
• Validation: Preliminary findings were validated through community feedback meetings (Feb 2022) and stakeholder consultations (April 2022).

3. Key Contributions

• Methodological Innovation: Demonstrates the efficacy of the SNE approach in bridging the gap between academic literature and local reality. It offers a cost-effective, rapid alternative to pure primary data collection while generating deep, context-specific insights.
• Contextual Nuance: Moves beyond documenting what barriers exist to explaining how they operate within specific household hierarchies and social structures in rural Mozambique.
• Programmatic Relevance: Provides actionable, locally grounded strategies for the "Kusingata" HIV project and similar initiatives, shifting focus from individual behavior change to relational and structural interventions.

4. Key Results

The study confirmed many known barriers but added critical local insights regarding the social mechanisms driving disengagement:

A. Pre-Pregnancy Phase

• Fertility Norms: Motherhood is central to social identity and economic security; pregnancy is rarely planned, and contraceptive use is often stigmatized or conflicting with reproductive expectations.
• Testing Barriers: Couple testing is rare due to fear of discordant results leading to accusations of infidelity or relationship breakdown.
• ART Adherence: Women often hide medication or skip doses to avoid disclosure. Food insecurity (taking meds on an empty stomach) and lack of side-effect counseling further hinder adherence.

B. Pregnancy Phase

• Delayed ANC: Pregnancies are often hidden initially due to fear of stigma or lack of resources, leading to late ANC entry.
• Male Involvement: Men rarely attend ANC due to fear of ridicule (perceived as being controlled by wives) or fear of mandatory HIV testing.
• Family Power Dynamics: Mothers-in-law play a critical, often negative role. They may blame daughters-in-law for introducing HIV, associate ART with infertility, or actively discourage treatment, sometimes leading to the daughter-in-law's expulsion from the household.
• Motivation vs. Vulnerability: While concern for the unborn child motivates initial engagement, stigma and relationship instability undermine sustained care.

C. Postpartum Phase

• The "Justification" Loss: Pregnancy provides a socially acceptable reason for clinic visits. Once the baby is born, women (especially those who haven't disclosed their status) lose this justification, leading to rapid disengagement.
• Maternal Prioritization: Some women view their health as secondary to the child's, stopping ART once they believe the risk of transmission has passed (e.g., after weaning).
• Infant Testing Gaps: Fear of a positive infant test result and fear of unintended parental disclosure lead caregivers to delay or avoid Early Infant Diagnosis (EID). Misconceptions that a negative early test is definitive also reduce follow-up.

5. Significance and Implications

• Intervention Design: The findings suggest that HIV programming must move beyond clinic-based, individual-focused models. Interventions need to:
  • Engage Influential Family Members: Specifically target male partners and mothers-in-law in counseling and education.
  • Strengthen Couple Counseling: Create safe spaces for discussing HIV status and fertility intentions to reduce fear of discordant results.
  • Address the Postpartum Transition: Implement differentiated service delivery (e.g., community-based support) to retain women in care after the "pregnancy justification" fades.
  • Clarify Infant Testing: Improve communication regarding the meaning of early infant test results and the ongoing risk of transmission during breastfeeding.
• Scalability: The SNE approach is presented as a scalable model for other low-resource settings to rapidly generate contextually relevant evidence for program design without waiting for lengthy primary data cycles.

Conclusion: The study highlights that successful HIV programming in Mozambique requires addressing the relational and structural dynamics (stigma, household power, gender norms) that dictate care-seeking behavior, rather than focusing solely on clinical service availability.