Abstract:

WHO recounts that the life expectancy of individuals with Spinal Cord Injury (SCI) is improving, however, their quality of life, especially, in developing countries like India, is still akin to 1940s Europe and North America. This comparison inspired our work.

SCI is a chronic and costly injury that can lead to many secondary complications having significant incidence and recurrence, resulting in inferior quality of life of the patients. The literature amply emphasises on the importance of patient education for effective injury management and avoiding secondary complications.

However, there is a dearth of studies delineating the Indian SCI ecosystem and its issues, especially with patient education. Hence, multi-institution research to understand the status quo of the Indian SCI ecosystem and the hindrances to patient education was undertaken. It involved five institutions, including individuals with SCI, caregivers and rehabilitation experts in various settings.

The study revealed a substantial deficit of fundamental knowledge about SCI, rehabilitation and secondary complications (especially, Pressure Injury) was observed among the patients and caregivers. The root cause of these issues was discovered to be the lack of lucid, timely, structured, and patient-centred education, especially during the critical period of early rehabilitation. All this was seen to ultimately lead to dissatisfied and unprepared patients, lacking the knowledge and skills to deal with their lives with SCI even after rehabilitation.

Hence, the focus of this work was to develop Educational Aids (EAs) for individuals with SCI in rehabilitation settings, to bridge the communication gap between the rehabilitation staff and patients/caregivers and fulfil their educational needs. Two guiding frameworks; one for the content design of the EAs, called Educational Aid Content Design (EACD) and another for effective delivery of the EAs to the intended audience, called, Education Delivery Mechanism (EDM), were developed. Using these frameworks, design, development and production of three EAs on three crucial topics: “What is Spinal Cord Injury and Rehabilitation?”, “What is Pressure Injury?” and “How to Prevent Pressure Injury?”, was accomplished.

Subsequently, validation field study to test the EAs and frameworks was accomplished at two rehabilitation centres, after vetting them through rehabilitation experts and experienced individuals with SCI. The evaluation studies involved Demographic, Pre and Post Testing and Participant Satisfaction Surveys.

This work encompasses all the design phases; from problem identification to intervention testing in the domain of SCI patient education. The work not only supports the medical education providers and instructional/educational designers to develop better EAs and deliver them effectively, using the two frameworks, to involve and inform patients/caregivers in the rehabilitation process actively but also supports the patients/caregivers directly through the EAs.