Examining participation among persons with spinal cord injuries and disorders using photovoice.

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. Keywords: Spinal Cord Injury, Community Participation, Photovoice, Veterans Approximately 276,000 individuals are living with a spinal cord injury and/or disorder (SCI/D) and about 12,500 new SCI/D cases are reported each year in the United States (US; DeVivo, 2012; National Spinal Cord Injury Statistical Center, 2015). The presence of SCI/D can result in a range of physical, psychological and social challenges (Gerhart, Bergstrom, Charlifue, Menter, & Whiteneck, 1993; Kennedy, Lude, & Taylor, 2006; Silver, Ljungberg, Libin, & Groah, 2012). An integral component of overall well-being among individuals with SCI/D is community participation (Barclay, McDonald, & Lentin, 2015; World Health Organization, 2001), which includes engagement in occupational, social and leisure activities, as well as active involvement in an individual's environment (Magasi, Hammel, Heinemann, Whiteneck, & Bogner, 2009; Ripat & Woodgate, 2012; Van de Velde, Bracke, Van Hove, Josephsson, & Vanderstraeten, 2010). The importance of community participation among individuals with SCI/D is highlighted by recent national priorities delineated by Healthy People 2020 to reduce the proportion of Americans with disabilities that experience barriers to participation in work, school, and other community settings (US Department of Health and Human Services, 2010). Although participation remains a significant rehabilitation and community integration outcome for individuals with SCI/D, few studies have described the social aspect of disability and community participation. Qualitative studies that evaluate experiences and perceptions around participation in the SCI/D community have been particularly limited. Data that account for the perspectives of individuals with SCI/D are needed to enhance interventions that aim to improve community participation and individual outcomes in this population (Kehn & Kroll, 2009; Simpson, Eng, Hsieh, Wolfe, & Spinal Cord Injury Rehabilitation Evidence Research Team, 2012). Furthermore, characterizing participation, in depth, is especially important given evidence that participation is driven by an individual's unique needs, lived experiences, and environment (Ripat & Woodgate, 2012; Whiteneck, 2006). …