“God will decide her fate”: the trajectories of women with traumatic spinal cord injury in India

Abstract

Purpose 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. Methods Based on a qualitative research paradigm, this study adopts a phenomenological approach and conducts in-depth interviews with 21 Indian women with traumatic SCI. Results (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. Conclusion 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 rehabilitation A 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