PDF(Pubmed)
Abstract：
OBJECTIVE: 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.
METHODS: Mixed-methods cross-sectional study.
METHODS: Micheweni district, Pemba.
METHODS: 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.
CONCLUSIONS: 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.
METHODS: Mixed-methods cross-sectional study.
METHODS: Micheweni district, Pemba.
METHODS: 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.
CONCLUSIONS: 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.
摘要：
目的：确定社区对色素性干皮病（XP）的严重程度的看法，以及在Micheweni寻求医疗保健的做法，奔巴回应了公众关于疾病负担增加的广泛信息。
方法：混合方法横断面研究。
方法：Micheweni区，奔巴.
方法：家庭调查中的211名男性和女性成年人，在案例研究中，XP患者的三名看护人/父母，20名主要社区领导人/有影响力的人和卫生工作者进行深入访谈，50名社区成员和六个焦点小组的其他领导人。
结果：这项研究表明，XP疾病存在于少数家庭中，其中一些家庭有一个以上的孩子受到影响。记录回顾显示,在过去3年中,共有17名病人被诊断患有此病,然而，在调查期间只有10人还活着。社区成员的调查结果显示，一些患者被认为患有XP疾病，其感知原因包括遗传，食物种类,信仰和其他社会文化实践。看护者和宗教领袖报告了污名和歧视。然而,在我们的研究小组进行临床检查时,一些被认为是XP的病例被确定为其他皮肤疾病.关于XP和其他皮肤病有很大的困惑。
结论：研究表明，XP仅影响少数家庭，因此被称为集中而不是普遍的疾病。由于这种疾病的稀缺性,该地区的大多数人都不知道这种疾病，因此，它与其他皮肤状况混淆。政府需要与其他利益相关者合作，向社区成员提供有关该疾病的教育计划，以解决对该疾病严重程度的误解。
方法：混合方法横断面研究。
方法：Micheweni区，奔巴.
方法：家庭调查中的211名男性和女性成年人，在案例研究中，XP患者的三名看护人/父母，20名主要社区领导人/有影响力的人和卫生工作者进行深入访谈，50名社区成员和六个焦点小组的其他领导人。
结果：这项研究表明，XP疾病存在于少数家庭中，其中一些家庭有一个以上的孩子受到影响。记录回顾显示,在过去3年中,共有17名病人被诊断患有此病,然而，在调查期间只有10人还活着。社区成员的调查结果显示，一些患者被认为患有XP疾病，其感知原因包括遗传，食物种类,信仰和其他社会文化实践。看护者和宗教领袖报告了污名和歧视。然而,在我们的研究小组进行临床检查时,一些被认为是XP的病例被确定为其他皮肤疾病.关于XP和其他皮肤病有很大的困惑。
结论：研究表明，XP仅影响少数家庭，因此被称为集中而不是普遍的疾病。由于这种疾病的稀缺性,该地区的大多数人都不知道这种疾病，因此，它与其他皮肤状况混淆。政府需要与其他利益相关者合作，向社区成员提供有关该疾病的教育计划，以解决对该疾病严重程度的误解。
