NLR, Amsterdam, The Netherlands.
Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
PLoS Negl Trop Dis. 2021 Apr 2;15(4):e0009329. doi: 10.1371/journal.pntd.0009329. eCollection 2021 Apr.
Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination.
We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed.
Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention.
This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention.
麻风病和与麻风病相关的污名可能对受影响者及其家庭成员的社会心理福祉产生重大影响。韧性是一个包含许多核心技能和能力的过程，这些技能和能力可能使人们能够应对污名化和歧视。本研究旨在制定并试点一项干预措施，以增强个人和家庭对与麻风病相关的歧视的韧性。
我们使用了一种准实验、前后对照的研究设计，并采用了混合方法。为期 10 周的基于家庭的干预措施旨在通过增强个体和家庭的保护能力和克服逆境的能力来增强他们的韧性。该研究在印度泰伦加纳邦的城市地区和奥里萨邦的农村地区的两个地点进行。使用目的性抽样纳入受影响者及其家庭成员。在干预前后使用了两个问卷：Connor-Davidson 韧性量表（CD-RISC，最高得分为 100，得分越高表示韧性越强）和世界卫生组织生活质量简表（WHOQOL-BREF，最高得分为 130，得分越高表示生活质量越高）。此外，在干预后进行了半结构化访谈。数据在基线时、干预完成后几周以及奥里萨邦队列的六个月后收集。配对 t 检验测量了干预前后的差异。定性数据采用主题分析。
共有 20 个家庭的 80 名参与者（23 名受影响者和 57 名家庭成员）参与了这项研究。我们发现，奥里萨邦受影响者和家庭成员的 CD-RISC 评分显著增加（基线 46.5，第一次随访 77.0，第二次随访 70.0），这种改善在六个月随访时仍保持。泰伦加纳邦参与者在干预后 CD-RISC 评分没有增加。两个州的受影响者和奥里萨邦的家庭成员的 WHOQOL-BREF 评分在随访时均显著升高。没有家庭退出研究。在定性反馈中，所有参与者都表示从该方案中受益。参与者特别赞赏该方案的社会层面。
这项试点研究表明，针对受麻风病影响者及其家庭成员的为期 10 周的基于家庭的增强韧性干预措施是可行的，并且有可能提高韧性和生活质量。需要进行大规模的疗效试验来确定该干预措施的有效性和长期可持续性。
