“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

Keywords:

• Traumatic spinal cord injury
• women
• healthcare and spinal cord injury
• spinal cord injury trajectories
• India

Acknowledgements

The authors express our heartfelt gratitude to the participants of this research. The authors are deeply thankful to the Spinal Foundation for its support in facilitating data collection for this study.

Disclosure statement

The authors report no conflicts of interest.

Notes

1 Paralysis of the lower limbs and trunk without the involvement of the upper limbs.

2 Formerly called quadriplegia and entails a paralysis of all the four limbs and trunk

3 CIC or intermittent self-catheterisation, involves inserting a thin, hollow tube called a catheter into the bladder through the urethra (the tube from which the urine exits the human body). Urine drains out of the catheter into a toilet or container after which the pipe is removed.

4 General Comment No. 14 of the Committee on Economic, Social and Cultural Rights

Additional information

Funding

This paper is based on the first author’s doctoral work undertaken at the Tata Institute of Social Sciences and received no specific grant from any funding agency, commercial entity or not-for-profit organisation.