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DoD Caregiver Study:

Family Caregivers for Veterans with Spinal Cord Injury: Exploring the Stresses and Benefits

PI:  Susan Charlifue, PhD
Funded by:  Department of Defense, Spinal Cord Injury Research Program
Award #W81XWH-11-2-0213
Dates:  2011-2014
Contact:  Susan Charlifue Susie@craighospital.org 303 789 8306

According to the Department of Veterans Affairs (VA), there are more than 26,000 veterans with SCI and spinal disorders living in the U.S.  Although these veterans are eligible for receiving non-skilled care in their homes, families still assume the majority of caregiving activities.  Family caregivers may have many difficulties balancing the multiple roles of parent, spouse and caregiver, and may have other commitments such as employment.  When caregivers are unable to cope effectively with all role responsibilities, their health and well-being, as well as that of the care recipient may be jeopardized.  

The goal of the proposed project is to identify the specific issues related to caregiving in SCI and develop a relevant and culturally appropriate instrument to assess caregiver distress and/or benefit in SCI.  The development of this measurement tool will help clinicians and service providers better target their interventions, with the goal of improving the support system for veterans with SCI and their family caregivers, and thereby improving long-term outcomes for those veterans with SCI.

Most of the research in family caregiving has focused on individuals with impairments such as Alzheimer’s disease or other conditions that occur in elderly individuals and result in limitations in thinking, memory, and behavior.  SCI tends to result in physical limitations, and typically occurs at much younger ages.  Family caregivers for people with SCI may be in a position of providing assistance for many years and be more likely to experience stress or physical injury from performing caregiving tasks over many years.  Unfortunately, the research involving family caregiving in SCI is very limited, and the issues facing family caregivers for veterans with SCI have not been studied in detail.   

One way to learn about these issues is to speak with the family caregivers themselves and allow them to share their experiences about the positive and negative aspects of being a caregiver.  We will conduct focus groups of family caregivers to ask them what they think are the positives and negatives of caregiving.  Using this information, we will identify areas of concern and develop a questionnaire that is specific to caregiving family members of veterans with SCI.  We are currently doing a similar study in the civilian population but believe that there are different systems of support for military families and may result in somewhat different questions that should be included in a measurement tool of caregiver distress and benefit.   

This is a three year study that will involve the focus groups, analysis of the focus group discussions, and creating and testing a new instrument to measure caregiver distress and benefit.  We anticipate that the study will benefit veterans with SCI themselves, as it has been noted that declines in the health and well-being of their  primary caregivers may result in potentially expensive and preventable health problems for the person with SCI.  Therefore, our improved abilities to identify specific areas of caregiver distress and/or benefit in SCI will enable clinicians, researchers, caregivers themselves, and their family members with SCI work on addressing and potentially eliminating the stressors and capitalizing on the positive aspects of caregiving.