Allyson G Hall1, Aizhan Karabukayeva2, Carmen Rainey2, Reena J Kelly2, Jonathan Patterson2, Jamie Wade3, Sue S Feldman2. 1. University of Alabama at Birmingham, Department of Health Services Administration, 1720 2nd Avenue South, SHPB 565, USA. Electronic address: hallag@uab.edu. 2. University of Alabama at Birmingham, Department of Health Services Administration, 1720 2nd Avenue South, SHPB 565, USA. 3. University of Alabama at Birmingham, Spain Rehabilitation Center, USA.
Abstract
BACKGROUND: Persons living with traumatic Spinal Cord Injury (SCI) face challenges when returning to their communities. The Spain Rehabilitation Center at the University of Alabama at Birmingham is developing a continuum of care for SCI patients. The perspectives of individuals with SCI are critical to designing a person-centered approach to the continuum. OBJECTIVE: This study sought to explore the lived experiences of individuals with SCI after their injury, as well as obtain the perspectives of therapists working with SCI patients. METHODS: Ten persons ranging in age from 23 to 65 years old and living with SCI were recruited to participate in in-depth interviews. We utilized a grounded theory approach to develop descriptive codes and themes. RESULTS: Our analysis highlighted domains that are critical to the lives of individuals with SCI including: planning for life after SCI, intrinsic motivation, environmental barriers, financial barriers, role of family, friends, and social networks, and relationships with medical providers. A key theme was the need for more information about how to manage their health condition, including the development of plans that are tailored to their specific needs. CONCLUSIONS: Individuals with an SCI need access to a continuum of care that addresses both medical and social needs.
BACKGROUND:Persons living with traumatic Spinal Cord Injury (SCI) face challenges when returning to their communities. The Spain Rehabilitation Center at the University of Alabama at Birmingham is developing a continuum of care for SCI patients. The perspectives of individuals with SCI are critical to designing a person-centered approach to the continuum. OBJECTIVE: This study sought to explore the lived experiences of individuals with SCI after their injury, as well as obtain the perspectives of therapists working with SCI patients. METHODS: Ten persons ranging in age from 23 to 65 years old and living with SCI were recruited to participate in in-depth interviews. We utilized a grounded theory approach to develop descriptive codes and themes. RESULTS: Our analysis highlighted domains that are critical to the lives of individuals with SCI including: planning for life after SCI, intrinsic motivation, environmental barriers, financial barriers, role of family, friends, and social networks, and relationships with medical providers. A key theme was the need for more information about how to manage their health condition, including the development of plans that are tailored to their specific needs. CONCLUSIONS: Individuals with an SCI need access to a continuum of care that addresses both medical and social needs.