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改变生活:一项定性研究,旨在深入了解马哈拉施特拉邦西部麻风病患者的重建手术情况。

Transforming Lives: A Qualitative Study Seeking Insights Into Reconstructive Surgery for Leprosy Patients in Western Maharashtra.

作者信息

Shrivastava Kajal, Ray Suman, Rathod Hetal, Wahegaonkar Abhijeet L, Jadhav Sudhir L, Mahajan Anil, S Johnson, Verma Prerna, Palal Deepu, Sengupta Shreya

机构信息

Community Medicine, Dr. D. Y. Patil Medical College, Hospital and Research Centre, Dr. D. Y. Patil Vidyapeeth, Pune, IND.

Orthopaedics, Sahyadri Super Speciality Hospital, Pune, IND.

出版信息

Cureus. 2024 Sep 1;16(9):e68416. doi: 10.7759/cureus.68416. eCollection 2024 Sep.

DOI:10.7759/cureus.68416
PMID:39360122
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11445598/
Abstract

Introduction Leprosy remains a significant health issue, especially in areas where diagnosis and treatment face numerous barriers, leading to preventable deformities and disabilities. This study aims to explore the obstacles to reconstructive surgery for leprosy patients, from both patient and healthcare provider perspectives. By conducting a qualitative analysis, the study seeks to assess the impact of reconstructive surgery on patients' quality of life, encompassing their physical, psychological, emotional, and social well-being. Methods This qualitative study was conducted from April to May 2024. One focus group discussion (FGD) for 12 participants, along with two in-depth interviews, was conducted for the patients at a leprosy rehabilitation center in western Maharashtra who have completed leprosy treatment and have undergone reconstructive surgeries for their disability. One in-depth interview was conducted with the key informant (a healthcare provider who is a surgeon who performs reconstructive surgeries for leprosy patients). Participants were selected through purposive sampling until information saturation was achieved. Interviews were conducted in local languages and analyzed using thematic analysis to identify key barriers and themes. Results A qualitative analysis of feedback from leprosy patients who underwent reconstructive surgery (RCS) highlights the importance of family support and the transformative impact of surgery on functionality and psychological well-being. Stigmatization and fear often delayed treatment-seeking behavior, but government incentives alleviated economic burdens, and participants expressed readiness to recommend RCS to others. Surgeons emphasize the variety of surgeries performed, eligibility criteria, recovery period, and success rate of 85-90%, noting the importance of financial accessibility and a multidisciplinary approach. Suggestions for improvement include infrastructure enhancement, adequate funding, and active case detection by the National Leprosy Eradication Programme (NLEP). Conclusion The findings highlight the complex interplay of factors contributing to delays in reconstructive surgery for leprosy patients in India. Addressing these barriers requires multifaceted interventions, including increasing public awareness, improving healthcare infrastructure, and enhancing support systems for patients. Policy development should focus on these areas to reduce disparities and improve the outcomes of reconstructive surgery in resource-limited settings.

摘要

引言

麻风病仍然是一个重大的健康问题,尤其是在诊断和治疗面临诸多障碍的地区,这些障碍会导致可预防的畸形和残疾。本研究旨在从患者和医疗服务提供者的角度探讨麻风病患者进行重建手术的障碍。通过进行定性分析,该研究旨在评估重建手术对患者生活质量的影响,包括他们的身体、心理、情感和社会福祉。

方法

这项定性研究于2024年4月至5月进行。在马哈拉施特拉邦西部的一家麻风病康复中心,对12名已完成麻风病治疗并因残疾接受了重建手术的患者进行了一次焦点小组讨论(FGD)以及两次深入访谈。对关键 informant(一位为麻风病患者进行重建手术的外科医生)进行了一次深入访谈。通过目的抽样选择参与者,直到达到信息饱和。访谈以当地语言进行,并使用主题分析进行分析,以确定关键障碍和主题。

结果

对接受重建手术(RCS)的麻风病患者的反馈进行的定性分析强调了家庭支持的重要性以及手术对功能和心理健康的变革性影响。污名化和恐惧常常延迟寻求治疗的行为,但政府激励措施减轻了经济负担,参与者表示愿意向他人推荐RCS。外科医生强调了所进行的各种手术、资格标准、恢复期以及85 - 90%的成功率,指出了经济可及性和多学科方法的重要性。改进建议包括加强基础设施、提供充足资金以及由国家麻风病消除计划(NLEP)进行积极病例检测。

结论

研究结果突出了导致印度麻风病患者重建手术延迟的各种因素之间的复杂相互作用。解决这些障碍需要多方面的干预措施,包括提高公众意识、改善医疗基础设施以及加强对患者的支持系统。政策制定应聚焦于这些领域,以减少差距并改善资源有限环境下重建手术的效果。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0b8/11445598/5481292cce78/cureus-0016-00000068416-i03.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0b8/11445598/77e97ad710f2/cureus-0016-00000068416-i01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0b8/11445598/d99e7ef7f34b/cureus-0016-00000068416-i02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0b8/11445598/5481292cce78/cureus-0016-00000068416-i03.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0b8/11445598/77e97ad710f2/cureus-0016-00000068416-i01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0b8/11445598/d99e7ef7f34b/cureus-0016-00000068416-i02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0b8/11445598/5481292cce78/cureus-0016-00000068416-i03.jpg

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本文引用的文献

1
Eradication of leprosy from India: Reflections on past, present & future.印度麻风病的消除:对过去、现在与未来的思考
Indian J Med Res. 2024 Jan 1;159(1):1-5. doi: 10.4103/ijmr.ijmr_64_24. Epub 2024 Mar 4.
2
Role of Reconstructive Surgery (RCS) in Improving the Quality of Life of Leprosy Afflicted Persons.重建手术在改善麻风病患者生活质量中的作用。
Indian J Lepr. 2016 Jan;88(1):7-12.
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Psychosocial aspects of deformed leprosy patients undergoing surgical correction.接受手术矫正的麻风病畸形患者的社会心理方面
Lepr Rev. 1991 Dec;62(4):402-9. doi: 10.5935/0305-7518.19910047.