Programme Department, NLR, 1097 DN Amsterdam, the Netherlands.
Public Health Department, Erasmus MC, University Medical Center Rotterdam, 3015 GD Rotterdam, the Netherlands.
Int Health. 2021 Dec 1;13(6):527-535. doi: 10.1093/inthealth/ihab001.
Individuals affected by Hansen's disease (leprosy) often experience stigma and discrimination. Greater psychosocial resilience may enable people to deal with such discrimination. This study aimed to explore sources of strength and resilience for individuals affected by Hansen's disease in Brazil.
We used a cross-sectional study design with a qualitative approach. Semistructured focus groups were conducted. Analysis comprised thematic categorisation of transcripts.
Thirty-one participants were included: 23 individuals affected by Hansen's disease and 8 healthcare providers. We found that while a few individuals affected were provided with formal psychological support in the early phases of their treatment, many noted the importance of providing such support at this time. Most participants described relationships with and social support from family members, friends and with others affected by Hansen's disease as their primary source of resilience. A key context for building resilience was through the peer-level sharing and engagement experienced in self-care and support groups. Participants also emphasised the importance of providing appropriate information about Hansen's disease and the importance of beliefs and spirituality.
Hansen's disease services should seek to build resilience in early treatment through counselling and during treatment and beyond by having people affected getting together. Across both settings supporting family and social relationships, providing accurate information and acknowledging spiritual beliefs are important.
受麻风病(汉森病)影响的个体常常经历污名和歧视。更强的心理社会适应力可能使人们能够应对这种歧视。本研究旨在探索巴西受麻风病影响的个体的力量和适应力来源。
我们采用了横断面研究设计和定性方法。进行了半结构式焦点小组讨论。分析包括对转录本进行主题分类。
共纳入 31 名参与者:23 名受麻风病影响的个体和 8 名医疗保健提供者。我们发现,尽管少数受影响的个体在治疗早期接受了正式的心理支持,但许多人指出此时提供这种支持很重要。大多数参与者将与家庭成员、朋友的关系以及与其他受麻风病影响的人的社会支持描述为其主要的适应力来源。建立适应力的一个关键背景是通过在自我护理和支持小组中体验到的同龄人之间的分享和参与。参与者还强调了提供关于麻风病的适当信息的重要性,以及信仰和精神的重要性。
麻风病服务机构应寻求通过咨询在早期治疗中建立适应力,并在治疗期间和之后让受影响的人聚在一起。在这两种情况下,支持家庭和社会关系、提供准确信息和承认精神信仰都很重要。