Community perspectives on the magnitude of Xeroderma pigmentosum and care-seeking practices in Micheweni district, Pemba: a mixed-methods crosssectional study
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Date
2024
Journal Title
Journal ISSN
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Publisher
BMJ Open
Abstract
Objectives To determine the community’s perception on
the magnitude of Xeroderma pigmentosum (XP) disease
and healthcare-seeking practices in Micheweni, Pemba
in response to the public widespread information on the
increased burden of the disease.
Design Mixed-methods cross-sectional study.
Setting Micheweni district, Pemba.
Participants 211 male and female adults in the
household survey, three caretakers/parents of patients
with XP in the case study, 20 key community leaders/
influential people and health workers in in-depth
interviews and 50 community members and other leaders
in six focus groups.
Results This study has revealed that XP disease exists
in few families of which some of them have more than
one child affected. The record review showed that there
were a total of 17 patients who were diagnosed with
the disease for the past 3 years, however only 10 were
alive during the time of the survey. Findings from the
community members revealed that several patients were
believed to have XP disease and perceived causes include
inheritance, food types, beliefs and other sociocultural
practices. Stigma and discrimination were reported by
caretakers and religious leaders. However, some cases
believed to be XP were identified as other skin conditions
when clinical examination was performed by the team of
our researchers. There is a great confusion about XP and
other skin diseases.
Conclusion The study has shown that XP affects only
few families, hence termed as concentrated rather than a
generalised disease. Due to the rareness of the disease,
majority of people in the district are unaware of the
disease, hence confusing it with other skin conditions.
There is a need for the government in collaboration with
other stakeholders to provide educational programme to
community members about the disease to address the
misconception about the magnitude of the disease
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Citation
Matemba LE, Shayo EH, Masemo A, et al. Community perspectives on the magnitude of Xeroderma pigmentosum and care-seeking practices in Micheweni district, Pemba: a mixed-methods crosssectional study. BMJ Open 2024;14:e077741. doi:10.1136/ bmjopen-2023-077741