School of Development, Azim Premji University, Bangalore, India.
School of Health Systems Studies, Tata Institute of Social Sciences, Mumbai, India.
Disabil Rehabil. 2023 Jun;45(12):2003-2012. doi: 10.1080/09638288.2022.2083245. Epub 2022 Jun 2.
Traumatic Spinal Cord Injury (SCI) is one of the most devastating physical disabilities that unexpectedly affects physical, mental, familial, social, and economic aspects of people's lives. This article analyses the trajectories of Indian women with SCI as they attempt to access health care after the injury.
Based on a qualitative research paradigm, this study adopts a phenomenological approach and conducts in-depth interviews with 21 Indian women with traumatic SCI.
(A) A lack of awareness and basic knowledge about SCI in India makes emergency response and eventual reintegration of persons with SCI in the society challenging. (B) The Indian health systems fail to meet the comprehensive health care needs of women with SCI primarily due to inadequate healthcare infrastructure and lack of empathy, accountability and knowledge about SCI among general healthcare providers. (C) The lack of patient and caregiver education results in diminished health and wellbeing of injured and their families.
The issue of SCI is not only a health issue but an issue of human rights. The persons with SCI, particularly women, must get an equitable access to health care, education, employment, transportation and other basic amenities and opportunities. Implications for rehabilitationA comprehensive response to SCI entails concerted measures such as ramping up the disability-inclusive healthcare infrastructure and enhancing the capacities of all health care providers.Besides providing rehabilitation services through the primary, secondary and tertiary levels of the health systems, India should also prioritise and offer quality community-based rehabilitation, especially in remote and rural areas.Given the unique vulnerabilities faced by women with disabilities in India, a compressive package of gender sensitive rehabilitation services needs to be integrated within the overall rehabilitation services across the country.The persons with SCI (and their families) need to be empowered through comprehensive information, counselling and skills that could help them lead independent, productive, and dignified lives.There is an urgent need to foster SCI research and make disaggregated data on SCI publicly available so that policy response to SCI is based on scientific evidence and local realities.
外伤性脊髓损伤（SCI）是最具破坏性的身体残疾之一，它会意外地影响人们生活的身体、心理、家庭、社会和经济方面。本文分析了印度 SCI 女性在受伤后试图获得医疗保健时的轨迹。
基于定性研究范式，本研究采用现象学方法，对 21 名外伤性 SCI 印度女性进行深入访谈。
（A）印度对 SCI 的认识和基本知识的缺乏使得对受伤者的紧急反应和最终重新融入社会具有挑战性。（B）印度卫生系统无法满足 SCI 女性的全面医疗保健需求，主要是由于医疗基础设施不足，以及普通医疗保健提供者对 SCI 缺乏同理心、责任感和了解。（C）缺乏患者和护理人员的教育导致受伤者及其家属的健康和福利下降。
SCI 问题不仅是一个健康问题，也是一个人权问题。SCI 患者，特别是女性，必须获得公平的医疗保健、教育、就业、交通和其他基本设施和机会。
对 SCI 的全面应对需要采取协调措施，例如加强包容残疾的医疗基础设施建设，并增强所有医疗保健提供者的能力。除了通过初级、二级和三级卫生系统提供康复服务外，印度还应优先考虑并提供高质量的社区康复服务，特别是在偏远和农村地区。鉴于印度残疾妇女面临的独特脆弱性，需要在全国范围内整合一套全面的、对性别问题有敏感认识的康复服务。SCI 患者（及其家属）需要通过全面的信息、咨询和技能来赋权，使他们能够过上独立、富有成效和有尊严的生活。迫切需要促进 SCI 研究，并公开提供 SCI 的分类数据，以便对 SCI 的政策反应基于科学证据和当地现实。
