Pal Deb K, Chaudhury Gautam, Sengupta Suryanil, Das Tulika
Neurosciences Unit, Institute of Child Health, University College, London, UK.
Soc Sci Med. 2002 Jun;54(12):1867-74. doi: 10.1016/s0277-9536(01)00154-x.
Only a small fraction of people with epilepsy in developing countries has access to medical facilities. Even with effective treatment, their psychosocial needs are often overlooked in the absence of obvious disability. In rural areas, community-based rehabilitation programmes assist in the integration of people with disabilities into employment and the community. However, the functional impairment associated with epilepsy is not well recognised in intervention programmes in developing countries. We report, for the first time, the social activities of children with epilepsy and their peers in rural India. We employed a cross-sectional design using a new age and sex-specific social activity questionnaire. Population screening in the context of a community-based rehabilitation programme identified 88 children with epilepsy and 250 randomly selected controls. A trained interviewer administered the questionnaire to mothers in Bengali. Girls' activities were principally domestic, whilst boys' were mostly outdoors and involved peers. All groups of children with epilepsy had significant social deficits, equally for boys and girls in the age range from 2 to 18 years (p < 0.05). Boys with epilepsy had limited peer group activities, and parents conferred fewer responsibilities to school age and adolescent children compared to controls. The nature and degree of deficits were beyond the constraints imposed by neurological impairment. Our findings in pre-schoolers were consistent with parental attitudes of overprotection found in previous research. We conclude that social integration needs active and early promotion among children with epilepsy. The assessment of remediable risk and protective factors in the family and community is an important practical area for research in community-based rehabilitation.
在发展中国家，只有一小部分癫痫患者能够获得医疗设施。即使接受了有效治疗，在没有明显残疾的情况下，他们的心理社会需求也常常被忽视。在农村地区，基于社区的康复项目有助于残疾人融入就业和社区。然而，在发展中国家的干预项目中，与癫痫相关的功能障碍并未得到充分认识。我们首次报告了印度农村癫痫患儿及其同龄人的社会活动情况。我们采用横断面设计，使用了一种新的针对不同年龄和性别的社会活动问卷。在基于社区的康复项目背景下进行的人群筛查确定了88名癫痫患儿和250名随机选择的对照儿童。一名经过培训的访谈员用孟加拉语向母亲们发放问卷。女孩的活动主要是家务，而男孩的活动大多在户外且涉及同龄人。所有癫痫患儿组都存在明显的社会缺陷，2至18岁年龄组的男孩和女孩情况相同（p < 0.05）。患有癫痫的男孩的同龄人活动有限，与对照组相比，家长赋予学龄儿童和青少年的责任较少。缺陷的性质和程度超出了神经功能障碍所带来的限制。我们在学龄前儿童中的研究结果与先前研究中发现的家长过度保护态度一致。我们得出结论，癫痫患儿的社会融入需要积极且早期的促进。评估家庭和社区中可补救的风险和保护因素是基于社区的康复研究的一个重要实践领域。
