This study explored perceptions of and reasons for delayed care-seeking for symptoms typical of multiple sclerosis (MS) among healthy individuals from diverse geographic and socioeconomic backgrounds in Zambia.
MS is a leading cause of disability in young adults, especially women. In Zambia, delays in diagnosis are common and influenced by both patient and health system–related factors. Prior studies from Zambia suggest that individuals who receive a diagnosis are more likely to be college-educated, urban-based, and financially able to pursue multiple medical consultations.
A qualitative study was conducted using human-centered design methodology at three sites: Lusaka (urban), Monze (semi-urban), and Chikankata (rural). Eligible participants were women aged 18–40 presenting for routine care at antenatal clinics. In small groups, participants were asked to construct a narrative of why a character would delay care-seeking for two weeks after developing a specific neurological symptom typical of MS. Rapid qualitative analysis of audio transcripts was used to extract key themes.
Seventy women participated with a mean age of 28.3 years (±6.8). Most were married (55.7%), unemployed (54.2%), and without chronic medical conditions (88.5%). Normalization and trivialization were the most common reasons for early delay, while prioritization of caregiving roles over self-care, financial or logistical barriers, lack of family support and fear of serious diagnosis predominated once symptoms persisted for several days. Sub-analysis by site revealed rural-dwelling participants more frequently cited logistical or financial barriers and mistrust of formal healthcare settings. Symptom type did not influence reason for delay.
These key themes for delayed care-seeking for MS symptoms among geographically diverse people in Zambia reveal important targets for broader public awareness and may help explain why non-urban dwelling people are less likely to receive an MS diagnosis. Future interventions may aim to shorten early delays to care-seeking by increasing symptom recognition through storytelling or lived-experience narratives.