Examining Participation among Persons with Spinal Cord Injuries and Disorders Using Photovoice

Abstract

Participation is a significant rehabilitation outcome for individuals with spinal cord injury and/or disorder (SCI/D), yet few qualitative studies have described the social aspect of disability and community participation. We used the photovoice methodology to explore perceptions and experiences related to participation among Veterans with SCI/D. We recruited a convenience sample of individuals with SCI/D at the Hines Veterans Affairs (VA) SCI/D Unit. Participants were asked to take photographs exemplifying their experiences and activities regarding participation. Within four weeks, participants returned their photographs and completed semi-structured interviews to discuss their photographs. Interview transcripts were analyzed using an inductive coding approach to identify emerging themes. Of the 18 Veterans with SCI/D who completed the initial orientation session, 9 (50%) completed the photography phase and follow-up interviews. A majority of participants were White (67%) and the mean age was 64 years. The mean duration of injury was 21.8 years, and 75% of participants were paraplegic. Most participants (78%) were community-dwelling. All participants discussed participation as a highly relevant issue in their lives. A majority of participants (67%) described sports as an example of participation. Over half (56%) emphasized the positive effects of participation (i.e., feelings of enjoyment / accomplishment) in sports as well as engaging in faith-based activities, being outdoors, and managing business- or household-related responsibilities. Barriers to participation were mobility impairments, lack of transportation and cost. Findings from this study can be used to address environmental changes or other accommodations that influence participation, both inside and outside the health care setting.