Project Background: Individuals with spinal cord injury and disorders, their families, and health care providers are particularly concerned about function and the impacts of challenges from poor/reduced functioning. The impact of loss of function, paralysis, and mobility difficulties may significantly impair daily activities and often leads to major lifestyle changes that require adjustment and adaptation. A functional needs assessment can inform individuals with SCI and their providers about strategies to improve and enhance well-being. In individuals with SCI/D, the environment (social, physical, and adaptive) can impact the level of functioning and can influence an individual's ability to live independently (Gray, 2003). The current needs assessment will help to pinpoint reasons for gaps in optimal well-being for Veterans with SCI/D due to functional challenges, to understand the consequences (or impact) of functional challenges, and to inform strategies to address areas that matter most to Veterans with SCI/D. Project Objectives: The overall goal of this project is to conduct a needs assessment to understand functional challenges that are most important to Veterans with SCI/D, in terms of the impacts to quality of life, life satisfaction, and participation opportunities. Objectives include: 1-Conduct a functional needs assessment survey to collect quantitative data using tools validated for use in populations with SCI. 2-Utilize photovoice to empower individuals with SCI/D to convey their experiences, perspectives, and needs with regard to functional challenges/impacts through visual images and first person narrative. Project Methods: This project will used a mixed methods approach to conduct a comprehensive functional needs assessment of the SCI/D Veteran population. Setting. VA SCI/D System of Care. The SCI/D System of Care operates as hub and spoke system. SCI Hubs include facilities with SCI Centers that have interdisciplinary SCI care teams in place and are typically located within large VA Medical Centers. SCI Spokes include non- Center facilities that are commonly located in outpatient clinic locations and have smaller SCI primary care teams. To date, there are 23-24 Hubs and 150 Spokes in the SCI/D System of Care. Data collection. To exemplify the utility of mixed-method design in disability research, we will conduct a needs assessment survey to collect qualitative data nationally across the SCI/D System of Care. With a smaller group of Veterans with SCI/D, we will use photovoice to convey their experiences, perspectives, and needs through visual images and first person narrative. Part 1. Functional needs assessment: Survey. We will conduct a functional needs assessment with a national sample of Veterans with SCI/D (including users of SCI Hub and Spoke facilities). We will evaluate 'function,' 'participation,' 'life satisfaction,' and 'quality of life' using the instruments relevant to SCI/D and validated in this cohort, where possible. Demographic and outcome data will be analyzed using descriptive statistics and structural equation modeling. Part 2. Functional needs assessment: Photovoice. In this participatory method known as photovoice, researchers provide participants with cameras, inviting them to take pictures and visually interpret a given subject. During follow-up narrative procedures, pictures have been found to help stimulate dialogue, creating a platform for participants to share their unique perspectives. Approximately 10-15 Veterans with SCI/D will be recruited at 1 Hub (Hines) and 1 Spoke (Jesse Brown) facility. Narrative interviews will be audio-recorded, transcribed, and analyzed using content analysis. Quantitative and qualitative data will be triangulated; the combination of these results will allow us to identify the factors most related to and how they influence our outcome (and therefore, to inform the best method of designing and delivering the lifestyle intervention).
This study entails a needs assessment with Veterans with SCI/D to identify what problems with functioning they are reporting, which are affecting their participation opportunities, and what is affecting their quality of life in a negative manner. This pre-implementation RRP will provide our research team with preliminary data for the next step, the development of a meaningful lifestyle intervention for implementation in the SCI/D population. Anticipated impacts include understanding what matters most to Veterans with SCI in terms of their function and informing a strategy to address the greatest difficulties faced, improve QOL, and enhance participation opportunities.
