Understanding, Predicting, and Preventing Life-Changing and Life-Threatening Health Changes among Aging Veterans and Civilians with Spinal Cord Injury
Abstract
Maintaining health is very difficult for both military Veterans and civilians in the years and decades after the onset of spinal cord injury (SCI). People with SCI are particularly vulnerable to secondary health conditions (SHC), such as pressure ulcers, urinary tract infections, and respiratory complications. Even when a single SHC occurs, there is a risk of more serious complications. Although not very well understood, the onset of one SHC may elevate the risk of others. A fracture leads to immobility, which may in turn trigger a sequence of events, such as the development of pressure ulcers that ultimately become infected. Or, the development of a pressure ulcer may lead to respiratory complications by virtue of immobility. Clearly, we need to understand how these negative health spirals occur if we are to have any hope of preventing them. Our purpose is to better understand the how and why of the development of negative health spirals and how they may best be prevented. We will use qualitative methods, meaning simply we will identify these health problems from the perspective of those with SCI. What can those who have experienced negative health spirals tell us about how they occur and how they feel they could have been prevented? What worked for them in ultimately stopping the negative health spiral, if indeed they were able to stop it? What were the other consequences? And, in those sad instances where the negative health spiral led to loss of life, what can the family members tell us so we can prevent these consequences from happening to others? We will identify participants from two existing studies, the first of which was initiated in 1973 and the second of which was initiated in 1997. There have been a total of 2,208 participants in the first study and 3,494 in the second. Participants have completed questionnaires, but there has not been a qualitative study conducted by our team in the past 20 years. There are a significant number of military Veterans in our study. A great many participants have also experienced health decline and negative health spirals at different times since the onset of their SCI. Because we have a large existing database, with detailed information on health on more than one occasion, we can identify those who have experienced these complications and enroll them in our qualitative study. We will specifically approach those who have reported multiple SHCs, who have indicated general health decline or significant health problems, and have had a number of recent medical treatments. We will enroll 60 participants with SCI, representing an equal mix of military Veterans and civilians. We will also enroll 30 participants who are family members of someone with SCI who either has experienced health decline or passed away from causes related to SHCs. We will conduct interviews with each of the 60 SCI participants and 30 family members to identify the pattern of SHCs over time. We will then conduct focus groups with 6-9 individuals each where those with SCI and their families may interact with each other to engage in a rich discussion of SHCs and negative health spirals. This will allow us to draw out common themes and patterns. We will learn from what has and has not worked for people when trying to prevent SHCs or trying to avoid SHCs from spiraling. We will analyze the data using state-of-the-art data analytic software. We will publish the results in journals for professionals and also disseminate the results directly to people with SCI and their families. The results of the research will be used to help us better measure multiple SHCs and negative health spirals in our future research. To help us accomplish this, we will bring together an advisory board comprised of members who are military Veterans, representatives of the Paralyzed Veterans Association or Veterans Affairs Medical Center, and stakeholders who have SCI. This group will be particularly important in
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Jan 31, 2017
- Source ID
- W81XWH1610629
Entities
People
- James S. Krause
Organizations
- Medical University of South Carolina
- United States Army