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.

Mixed-methods cross-sectional study.

Micheweni district, Pemba.

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.

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.

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.

In recent years, full childhood routine immunisation coverage has fallen by 5% to levels not seen since 2008; between 2019 and 2021, 67 million children were undervaccinated. We aimed to identify and describe the determinants of vaccination drop-out from the perspectives of caregivers and health workers in Malawi.

We used a community-based participatory research approach to collect data through photo elicitation, short message service exchanges, in-depth interviews and observations. We used a team-based approach for thematic analysis, guided by the Behavioural and Social Drivers of Vaccination framework.

The study was conducted in Lilongwe and Mzimba North Districts in Malawi, representing urban and rural settings, respectively.

Participants included caregivers of partially vaccinated (n=38) and fully vaccinated (n=12) children between 25 and 34 months and Community Health Workers (n=20) who deliver vaccines. Caregiver participants were identified through health facility vaccination registers and with the assistance of community health volunteers.

We identified five principal drivers of routine vaccination drop-out: (1) poor caregiver knowledge of the vaccine schedule and how many vaccines are needed for full vaccination; (2) caregivers’ fear of repercussions after not following vaccination guidelines; (3) rumours and concerns if vaccines are repeated or new ones are introduced; (4) high opportunity cost of health facility visits, exacerbated by wait times, stockouts and missed opportunities and (5) limited family support and vaccination burden placed largely on mothers. Key differences between rural and urban settings related to practices around health cards and vaccine wastage, wait times, migrant and tenant communities, and social support systems.

Immunisation interventions should be tailored to address drivers of drop-out in the community, the health facility and beyond. Service quality, timeliness and reliability need to be improved, and tailored messaging and education are needed, especially in response to COVID-19-related misinformation and introductions of new, routine vaccines.