Spinal cord injury's (SCI) devastating human and social consequences affects 230,000 Americans, with 11,000 new cases yearly. Substantial evidence confirms that the lack of meaningful community life is a risk factor for negative medical and psychosocial outcomes. Despite huge gains in medical care (post-SCI lifespan is 30 - 40 years vs. 7 years in recent decades) the ultimate long-term outcome of return to social life remains little examined. We lack basic knowledge about how SCI survivors define, and attain or fail to regain desired forms and modes of meaningful community engagement. This gap is a scientific and national priority (IOM 1997, NIH 2001, NIDRR 1999). The goal of the proposed study is to identify the forms and modes of community engagement defined as meaningful and acceptable by survivors of SCI.
The specific aims are to: (1) identify the forms of community envisioned and desired after SCI; (2) identify the modes of community engagement desired and acceptable; (3) describe the shared expectations and goals for each form of community and modes of participation; (4) Compare NEW onset and LONG-TERM SCI survivors to determine the eras, transitions, and identifications over the course of post-SCI life; and (5) Evaluate preliminary qualitative hypotheses. The proposed 48 month cross-sectional project will select 160 adults with SCI from the Detroit region. Two main groups are defined for study: NEW SCI (N=80), and LONG-TERM SCI (N=80). African Americans and Whites, women and men, equally, will be selected. Methods include structured and open-ended questions and standardized measures. Analyses include qualitative methods (content, theme, and narrative analyses), basic statistics, and evaluation of qualitative hypotheses. Notably, the project will combine concepts and methods of anthropology, and medicine and rehabilitation. Findings will be directly relevant for advancing basic scientific knowledge, and after further studies, may assist clinicians, program staff, and persons with disabilities and their families.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZRG1-SNEM-1 (01))
Program Officer
Shinowara, Nancy
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Wayne State University
Other Health Professions
Schools of Pharmacy
United States
Zip Code
Fritz, Heather A; Dillaway, Heather; Lysack, Cathy L (2015) ""Don't Think Paralysis Takes Away Your Womanhood"": Sexual Intimacy After Spinal Cord Injury. Am J Occup Ther 69:6902260030p1-10
Lysack, Cathy; Neufeld, Stewart; Dillaway, Heather (2014) Do risk perceptions explain sex differences in community integration and participation after Spinal Cord Injury? J Spinal Cord Med 37:193-201
Neufeld, Stewart; Lysack, Cathy (2010) The 'risk inventory for persons with spinal cord injury': development and preliminary validation of a risk assessment tool for spinal cord injury. Disabil Rehabil 32:230-8