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印度南部医疗服务提供者对麻风病的披露:患者的认知及其与泰米尔纳德邦麻风病控制的相关性

Disclosure of Leprosy by Health Care Providers in South-India: Patients' Perception and Relevance to Leprosy Control, Tamil Nadu.

作者信息

Thilakavathi S, Manickam P, Mehendale S M

出版信息

Indian J Lepr. 2015 Jul-Sep;87(3):155-60.

Abstract

Stigma, isoIation and discrimination are typically associated with diagnosis of leprosy and its disclosure. Health care providers (HCPs) find it challenging to disclose the diagnosis of leprosy to patients and their family members. A qualitative study was done in a rural community near Chennai in Tamil Nadu, from August 2011 to March 2012, covering 155 out of 648 (23.9%) purposively selected leprosy patients from 53 out of 148 panchayats, representing 264 villages in the study area; Out of these 155 patients, 59% were males; 30% were illiterates; 70% were married; 56% were living in nuclear families; half the leprosy patients were either agricultural labourers or skilled workers (50%).Thirty two percent were multibacillary (MB) cases and 68% were pauci bacillary (PB) cases; 77% were old patients and 23% were new patients; 22% had leprosy deformity 12% had disfiguration; 23% had anaesthesia and 3% were with lagophthalmous. Of the 155 patients, 31 (20%) reported that they were not informed about diagnosis of their disease by the concerned HCPs. They were informed to be having a skin disease or a skin patch. Of these 31 patients, 22 (71%) were women; all except one with PB leprosy. Seven patients (23%) had not yet started on treatment 3 patients (10%) were given treatment when they were young and neither, them nor their parents were informed about this disease. Seven (33%) of the married patients who had the disease during their child had or when they were young, were not informed of the diagnosis by the HCPs. Ten respondents (32%) were neither bothered nor concerned about non disclosure of the disease by HCPs. Now, after knowing the diagnosis of the disease 4 females (13%) mentioned that they were having some fear, worry or stigma. As non-disclosure of leprosy by HCPs may adversely affect acceptance and adherence, to treatment by the patients, appropriate communication strategies should be developed and implemented.

摘要

耻辱感、隔离和歧视通常与麻风病的诊断及其披露相关联。医疗服务提供者(HCPs)发现向患者及其家属披露麻风病诊断具有挑战性。2011年8月至2012年3月,在泰米尔纳德邦金奈附近的一个农村社区进行了一项定性研究,从148个村委会中的53个中,有目的地选择了648名麻风病患者中的155名(23.9%),代表研究区域内的264个村庄;在这155名患者中,59%为男性;30%为文盲;70%已婚;56%生活在核心家庭;一半的麻风病患者是农业劳动者或技术工人(50%)。32%为多菌型(MB)病例,68%为少菌型(PB)病例;77%为老患者,23%为新患者;22%有麻风病畸形,12%有毁容;23%有麻木,3%有兔眼。在155名患者中,31名(20%)报告称相关医疗服务提供者未告知他们所患疾病的诊断情况。他们被告知患的是皮肤病或有皮肤斑块。在这31名患者中,22名(71%)为女性;除1名少菌型麻风病患者外,其余均是。7名患者(23%)尚未开始治疗,3名患者(10%)年轻时接受过治疗,但他们自己和父母都未被告知所患疾病。7名(33%)在孩子时期或年轻时患病的已婚患者,医疗服务提供者未告知他们疾病诊断情况。10名受访者(32%)对医疗服务提供者未披露疾病情况既不烦恼也不关心。现在,在得知疾病诊断后,4名女性(13%)表示她们有一些恐惧、担忧或耻辱感。由于医疗服务提供者不披露麻风病情况可能会对患者接受和坚持治疗产生不利影响,因此应制定并实施适当的沟通策略。

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