BMJ Open · 6 authors, 4 centres
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A mixed-methods cross-sectional study in Micheweni, Pemba found that Xeroderma pigmentosum affects only a handful of families in the district and is concentrated rather than generalized, with community members frequently confusing XP with other skin conditions.
This mixed-methods cross-sectional study combined a household survey of 211 adults, in-depth interviews with 20 key informants, focus group discussions with 50 community members, and case studies of 3 caretakers to assess community perceptions of XP magnitude and care-seeking practices in Micheweni district, Pemba. Record review at the health facility identified 17 patients diagnosed with XP over the preceding 3 years, of whom 10 were alive at the time of the survey. Household survey data revealed low community awareness of XP, with only about half of respondents able to describe its clinical presentation. Most participants attributed XP to cultural and religious beliefs rather than its genetic basis, and families frequently sought care from traditional healers before visiting health facilities. Caretakers and religious leaders reported stigma and discrimination. The cross-sectional design and single-district setting limit generalizability and preclude assessment of temporal relationships.
