Neonatal sepsis remains a major health challenge in Africa, requiring innovative research and robust clinical trials to improve treatment and outcomes. However, involving newborns in such trials is complex, and success depends heavily on the engagement of key stakeholders, including parents, caregivers and legal guardians.
In neonatal intensive care settings, parent support groups play a vital role, not only by offering emotional support and connecting families with healthcare professionals and peers during stressful times, but also by providing educational resources and fostering trust in medical research. These groups help ensure that parents are well-informed and confident in the care their newborns receive.
SNIP-AFRICA’s engagement activities
SNIP-AFRICA aims to tap into these networks to improve participation in neonatal sepsis trials by better understanding the role parent support groups play in clinical research.
Between March and July 2024, the SNIP-AFRICA team at MU-JHU Research Collaboration (Uganda) facilitated workshops with parents, midwives, clinicians, village health team representatives, and neonatal health researchers to explore the role of parent support groups in neonatal sepsis trials. These discussions involved a total 95 participants from Uganda, United Kingdom, Switzerland, Kenya, Tanzania, Nigeria, South Africa, Central African Republic and Zimbabwe, and helped identify barriers and facilitators in establishing and sustaining them for neonatal sepsis trials.
Key takeaways
The discussions revealed several recurring themes and challenges regarding the formation and sustainability of parent support groups in neonatal clinical trials:
- Parent support groups are essential resources. These groups provide emotional support, alleviating distress for new parents by offering a safe space to air concerns and fears. They also serve as a bridge between researchers and the community, ensuring that parents receive accurate, accessible information about clinical trials and their benefits.
However, limited awareness of these groups’ existence and the support they provide prevents some parents from accessing this critical resource. - Resource constraints limit group sustainability. Establishing and maintaining parent support groups often depends on the goodwill of individuals, such as parents of preterm babies, making it difficult to ensure long-term sustainability and effectiveness. The lack of funding and resources poses a major obstacle to these groups’ establishment and growth.
- Geographic isolation complicates post-discharge support. Families living in remote or rural areas face significant challenges in accessing continuous support after their newborns are discharged from the hospital. Limited transportation options, long distances to healthcare facilities, and poor infrastructure can make follow-up care and ongoing support difficult.
Tools like mobile apps and messaging services such as WhatsApp can play a key role in providing accessible and relatively cost-effective means for keeping parents connected, informed, and supported.
These findings highlight the crucial role that neonatal support groups play and emphasise the need for advocacy activities to establish and sustain these support groups among parents, clinicians and researchers. By addressing the barriers identified in these discussions and developing solutions, we can foster a more supportive and inclusive environment for both parents and newborns.
Many thanks to the SNIP-AFRICA team at MU-JHU Research Collaboration for their support in writing this article.
