Community Voices Shape the Future of Maternal Health Research

What matters most to mothers when they need medicines during breastfeeding? How can research better address the realities of maternal sepsis and postpartum depression? These were some of the critical questions explored during the MILK-CENTRE Community and Civil Society Priority Setting Workshop, held on 15–16 May 2026 in Gulu.

The two-day workshop brought together breastfeeding mothers, community leaders, civil society organizations, women's groups, disability advocates, healthcare professionals, and researchers to ensure that the voices of communities help shape the future of maternal health research.

Organized under the Maternal and Infant Lactation pharmacoKinetics: Centre of Excellence for LactatioN Therapeutics Research and Engagement (MILK-CENTRE), the workshop formed part of a broader priority-setting process aimed at identifying the most important research questions on medicine use during breastfeeding, maternal sepsis, and postpartum mental health.

Putting Communities at the Centre of Research

Research priorities have traditionally been driven by scientists and healthcare professionals. While scientific expertise remains essential, the people most affected by health challenges often have unique insights into the realities of accessing care, making treatment decisions, and navigating healthcare systems.

The workshop sought to bridge this gap by creating a platform where communities could share their lived experiences, identify the issues they consider most urgent, and work alongside researchers to prioritize future research.

Using an adapted Delphi priority-setting approach, participants engaged in interactive presentations, experience-sharing sessions, thematic discussions, and structured ranking exercises. This participatory process enabled every participant to contribute equally, regardless of their educational or professional background.

Understanding Medicines During Breastfeeding

The workshop opened with presentations led by Site Principal Investigator Dr. Francis Williams Ojara and Research Midwife Prisca Abitimo, who introduced participants to the science of medicine use during breastfeeding.

Through plain-language presentations and interactive discussions, participants explored why many women require medicines after childbirth and how limited evidence on medicine safety during lactation continues to influence treatment decisions.

The sessions addressed common misconceptions surrounding medicines during breastfeeding and highlighted the importance of balancing effective treatment for mothers with the health and well-being of their infants. These discussions laid the foundation for participants to reflect on their own experiences and identify areas where additional research is most needed.

Listening to Lived Experiences

One of the most powerful moments of the workshop came during the experience-sharing sessions led by Dr. Constatine Loum. Participants openly discussed the realities facing mothers in their communities, from delayed recognition of maternal sepsis and barriers to accessing emergency care to fears about taking medicines while breastfeeding.

Many described how financial challenges, long distances to health facilities, transport costs, medicine shortages, and conflicting information from different sources often delay treatment and increase risks for mothers and babies.

The conversations also highlighted the emotional impact of severe maternal illness, with participants describing the anxiety, fear, and uncertainty experienced by women recovering from childbirth complications. These personal stories provided valuable context that statistics alone cannot capture, reinforcing the importance of community perspectives in research.

Bringing Maternal Mental Health into the Conversation

The second day of the workshop focused on maternal mental health, particularly postpartum depression, an area that participants agreed deserves greater attention within maternal healthcare.

Participants discussed how emotional distress after childbirth often goes unrecognized because symptoms may be dismissed as a normal part of motherhood or misunderstood within communities. Stigma surrounding mental health, limited awareness, and inadequate access to counseling and psychosocial support were repeatedly identified as major barriers preventing women from seeking help.

The discussions underscored the close relationship between physical and mental health. Participants reflected on how complications such as maternal sepsis can affect emotional well being, breastfeeding, family relationships, and mothers' confidence in caring for their newborns.

By bringing maternal mental health into the priority-setting process, the workshop emphasized the need for more holistic approaches to maternal care that recognize both physical and emotional well-being.

From Conversations to Priorities

Throughout the workshop, participants worked together to identify and rank the issues they believed should guide future maternal health research. Using an adapted Delphi consensus-building process, they developed criteria for determining priority research areas and independently scored issues based on their importance, severity, impact on mothers and infants, community relevance, and potential to improve health outcomes.

Following two rounds of discussion and ranking, participants reached consensus on several high-priority areas that we will share in our subsequent updates. These priorities will contribute to the wider MILK-CENTRE research agenda and inform future studies, interventions, and stakeholder engagement activities.

Building Research with Communities, Not Just for Communities

The workshop demonstrated that meaningful community engagement is not simply about consultation, it is about partnership. By creating space for dialogue, listening to lived experiences, and involving communities in decision-making, MILK-CENTRE is helping ensure that future research reflects the realities of women and families across Uganda.

The knowledge generated during the workshop will be combined with findings from clinicians, researchers, policymakers, and other stakeholders to develop a comprehensive and community-informed maternal health research agenda. As MILK-CENTRE continues its work, the voices heard in Gulu will help shape research that is scientifically rigorous, culturally appropriate, and responsive to the needs of communities.

Looking Ahead

The Community and Civil Society Priority Setting Workshop marked an important milestone in MILK-CENTRE's commitment to co-creating research with communities. The workshop reaffirmed that when researchers and communities work together, research becomes more relevant, more inclusive, and more likely to improve health outcomes.

By placing women, families, and communities at the heart of research prioritization, MILK-CENTRE is laying the foundation for evidence that will support safer medicine use during breastfeeding, improve the prevention and management of maternal sepsis, strengthen responses to postpartum depression, and ultimately contribute to healthier mothers, healthier babies, and stronger communities across Uganda.