Every year between 250,000 and 500,000 people worldwide suffer spinal cord injuries (SCI). Survivors often experience devastating effects related to their physical function, social participation, quality of life and overall health. Many unintended consequences associated with SCI are as a result of inadequate medical care or rehabilitation services or from barriers they experience in the physical, social and policy environments.
As a former rehabilitation nurse, Susan Newman, Ph.D., RN, associate professor in the College of Nursing, is very familiar with the issues facing SCI survivors in the U.S., while Suparna Qanungo, Ph.D., an assistant professor in the College of Nursing, was born and raised in India and is all too aware of the extreme barriers people with disabilities face there. Together, the two investigators will embark on a yearlong study to explore personal and environmental assets and challenges facing transitional living facility residents with SCI in the Kailash Colony district of Delhi, India.
Due to factors such as poverty, lack of insurance, low awareness and few specialized treatment centers, India offers a unique setting to conduct research to address the needs of people with SCI. With such a scarcity of resources, survivors typically struggle in their daily lives after being discharged from the hospital. Many have minimal or no community-based rehabilitation opportunities after discharge and many seek medical care months, or even years, after injury.
“People in India with disabilities have a very hard life and are very stigmatized,” says Qanungo,. “The community does not look at them as individuals, but as burdens to society.”
This study will use a community-engaged research approach, working in partnership with an Indian-based organization known as Empowering Spinal Cord Injured Persons Trust India (ESCIP). The investigators will utilize Photovoice, a participatory research method that capitalizes on the old idiom “a picture is worth a thousand words,” to empower SCI survivors to use photographs to share their unique perspectives, stimulate discussion, raise awareness and promote social action. Photovoice provides a catalyst for the empowerment of individuals with disabilities and has been used successfully in evidence-based advocacy efforts to change policy at the systems level in the U.S. and in other low- and middle-income countries.
Negative attitudes, stigma and lack of awareness regarding disabilities are social barriers encountered by people with SCI. Most research addressing post-SCI outcomes in low- and middle-income countries has focused primarily on physical impairments and activity limitations. However, there is a dire need to know more than just about physical limitations among those with spinal injuries, especially participation. The World Health Organization (WHO) defines participation as involvement in life situations such as school, employment or recreation.
“The majority of SCI survivors have the potential for a full life in front of them, but often they feel like this is the end of the road for them,” said Newman. “Our goal is to change that mindset, and this project has the potential to help individuals become more independent and to provide the tools so they can self-advocate.”
The investigators will use the findings to tailor a peer navigation model for India that Newman successfully implemented in the U.S. Through this model – which combines elements of peer mentoring, patient navigation and advocacy – program leaders will work with SCI survivors to set individual community participation and health goals. The results from this pilot have the potential to support evidence-based advocacy efforts to educate the community and advocate for policy change, as well as inform the development of a culturally and locally relevant SCI peer navigation intervention.