By Anais Cottage-stone · 25 August 2026
On Thursday, 14th May 2026, NeoNET AFRICA, in collaboration with KlebNET-GSP, opened its 2026 seminar series with Partners in Protection: Engaging Families in IPC and Neonatal Sepsis Research. Chaired by Professor Angela Dramowski (Stellenbosch University, South Africa), the session turned away from pathogens and towards people, asking what it takes to involve parents, families and frontline staff as genuine partners rather than as subjects of research done to them.
Watch the full seminar recording here.
Dr Damalie Nalwanga (Makerere University and MU-JHU Care Ltd, Uganda) described stakeholder engagement work carried out across Uganda and Tanzania, aimed at understanding the regulatory, social and provider factors that shape neonatal sepsis research and at building a roadmap through the bottlenecks.
Much of the work centred on parent support groups. Where these thrive, the ingredients were consistent: real collaboration between healthcare providers and parents, online platforms for sharing information, community involvement to dispel myths about sick newborns, and emotional and psychological support offered to parents at what is one of the hardest moments of their lives. The barriers were equally consistent. Support groups depend heavily on voluntary commitment, many parents are unaware such groups exist or what they are for, resources to establish them are limited, and families often become geographically isolated once discharged from hospital.
Her recommendations were practical: financial and logistical support, training for community health workers, regular sensitisation and awareness campaigns, peer mentorship, formal recognition for those who run the groups, integration with healthcare facilities, and dissemination of neonatal research results back to the families who made the research possible.
A second strand, the Neo-EPIC qualitative study, examined preferences for informed consent models when enrolling critically ill neonates in trials. The finding was a clean divergence: parents and caregivers preferred a retrospective consent model, while clinicians preferred a prospective one. Both groups were reasoning about the same pressures, namely that babies arrive critically ill, that consent must not delay lifesaving treatment, and that the process also has to protect the staff and researchers involved.
Dr Nalwanga also reported workshops with regulators and ethics committee representatives on adaptive trial designs, and participatory work with clinical staff. Her closing lesson was that stakeholders are diverse but all need to be engaged to some reasonable extent, for buy-in during a study, for impact, and for sustainability afterwards. Engagement, she stressed, is continuous rather than a box to be ticked at the start.
Lydia Davidson (London School of Hygiene and Tropical Medicine, UK, and The Health Research Unit Zimbabwe) and Sharon Sibanda (The Health Research Unit Zimbabwe at the Biomedical Research and Training Institute) presented a co-design approach to infection prevention and control in a Zimbabwean neonatal unit.
They began with a situational analysis that paired objective measurement with lived experience. The WHO IPC facility assessment tool returned a score of 6 out of 37, confirming significant structural challenges. Alongside it, the team used observations, in-depth interviews, body mapping and emotional mapping to understand how IPC actually feels to the people doing it.
For mothers, the findings clustered around the waiting area, difficult relationships with other mothers, and a heavy personal sense of responsibility when infections occurred. For staff, three themes emerged: hierarchy, cleaning tasks allocated according to staff role rather than need, and burnout and moral distress. Workshops with each group, including body mapping with staff, then fed into shared improvement points.
Their reflections on the method were candid. Co-design in this setting has to contend with the technical nature of IPC, with hierarchy, and with trauma. What they took from it is that infection prevention does not happen in isolation, that understanding the wider context everyone is working in is essential, and that communication underpins every intervention.
Faith Kandiye (The Health Research Unit Zimbabwe and Imperial College London) closed the session with parental experiences of recognising neonatal sepsis and seeking care, drawn from the Wellcome-funded AI for SBI study nested within the Neotree study in Zimbabwe.
The premise is simple and easily overlooked. Outcomes depend on how quickly sepsis is recognised and treated, and in Zimbabwe the first responder is almost always a parent. Whether a baby reaches care in time rests on whether a mother recognises what she is seeing and knows what to do about it.
Through focus group discussions and interviews with mothers, the study found that awareness of neonatal sepsis is limited and that symptoms are frequently interpreted through spiritual or traditional frameworks, with a belief in bewitchment rather than infection shaping where families turn first. One mother put the interpretive gap plainly: "Some of us who didn't go to school like the nurses did, I can only explain what I see. I can think that because my baby has a hot body, it is malaria, but upon examination it might be something different."
Once families reach hospital, a second problem takes over. Parents described being excluded from decisions about their own babies and left without explanation, sometimes handed written notes they could not read. Fear of approaching clinicians featured too, with mothers noting that some doctors explain things willingly and others do not.
Her recommendations followed the pathway. Community education to help parents and community health workers recognise red flag symptoms early, framed in a way that respects community beliefs rather than dismissing them, so that traditional values and clinical care can work together. Family-centred care that treats parents as active partners and improves how clinicians communicate. And streamlined referral pathways that reduce the structural delays between a worried parent and specialist neonatal care.
Across three very different projects, the same argument surfaced. Whether the goal is enrolling neonates in a trial, sustaining an infection control intervention, or getting a septic baby to hospital sooner, the technical work only functions if the families and frontline staff involved are treated as partners in it. Engagement is not a preliminary step before the real research starts. It is part of the intervention.
