Hydrocephalus, healing, and disrupted daily living: exploring maternal experiences at Queen Elizabeth Central Hospital in Blantyre, Malawi.

Background: Each year, nearly 400,000 new cases of paediatric hydrocephalus are estimated to occur worldwide, and almost half of these cases are expected to affect children in Africa. At Queen Elizabeth Central Hospital (QECH), an urban tertiary hospital in Blantyre, Malawi, located in south-east Africa, around 200 children received neurosurgical treatment for hydrocephalus in 2023. These children require lifelong follow-up and care, which places significant demands on their caregivers.

Objectives: The following research objectives guided the study: 1) To explore how mothers of children with hydrocephalus perceive the condition. 2) To examine the care pathways that mothers and their children with hydrocephalus engage in. 3) To identify the implications of having a child with hydrocephalus.

Methods: We applied a qualitative method with an explorative design. We conducted 15 in-depth interviews and two focus group discussions among 16 mothers (aged 20-35 years) of inpatient or outpatient children with hydrocephalus at QECH. Convenience sampling was used to recruit the 16 participants. We conducted a thematic analysis.

Results: 1) Mothers referred to various disease explanations, often switching between attributing the condition to God, supernatural causes such as bewitchment, and biomedical factors. 2) The care pathways for mothers and their children with hydrocephalus at QECH are fraught with challenges, creating strenuous trajectories that hinder access to care and present significant challenges. 3) Having a child with hydrocephalus has extensive social implications, including stigma and disruption of daily living.

Conclusions: Our findings highlight the need for intersectoral action to optimise treatment and reduce stigma. This involves educational programs and awareness-raising campaigns to improve maternal health literacy. Additionally, targeted initiatives are urgently needed to improve healthcare infrastructure, transportation, and pathways to care. Since hydrocephalus management is a lifelong process, the possibility of conducting follow-up through outreach clinics or telemedicine and community-based rehabilitation should be further explored. Finally, to improve management for children with hydrocephalus in Blantyre and across Malawi includes efforts to bolster the educational, economic, social, and legal position of women.