Determinants of neonatal research participation in LMICs: implications for health systems

Background

Improving infant neurodevelopment and nutrition globally depends on generating research applicable to low- and middle-income countries LMICs. However, limited understanding exists on why families disengage from research participation, introducing selection bias and limiting policy relevance. The Mini_ND study in Malawi explored health system capacity, service delivery, and social factors shaping research participation among mothers of preterm/low-birth weight LBW infants.

Methods

We conducted a mixed-methods analysis of recruitment and follow-up within the Mini_ND longitudinal neonatal cohort embedded in routine neonatal care (August 2025–May 2026). Recruitment and attrition patterns were analysed descriptively, with attrition explored through participant follow-up phone calls. Field notes and follow-up data were analysed thematically to identify caregiver experiences and barriers.

Results

Recruitment was low 32% with attrition 6.3%. Health system barriers: prolonged neonatal intensive care stays, limited infrastructure, staff shortages, and competing workloads reduced research capacity. Social factors were prominent; mothers described post-partum psychological distress with limited mental health support, affecting engagement. Community stigma surrounding preterm/LBW infants contributed to maternal–infant dissociation and reduced motivation. Decision-making was often constrained, with reliance on absent partners or guardians. Structural barriers including transport costs, competing responsibilities, and political instability further undermined participation.

Conclusions

Recruitment challenges were not solely methodological but driven by interconnected health system, social, and structural factors. Strategies trialled in Mini_ND included community sensitisation, peer networks, family involvement, and empowering mothers. Addressing these barriers is essential to ensure equitable health service delivery and inclusive, representative research design in LMICs.

Key messages

• Social and psychological barriers in neonatal research are under recognised and can significantly reduce research participation in LMICs. Urgent need to highlight real-world system aware study design.

• Increasing understanding on equitable neonatal research practices and leveraging culturally sensitive strategies to result in generalisable robust data that will drive public health policy.