Military Injuries: Understanding Post-Traumatic Epilepsy (MINUTE), Health, and Quality-of-Life Effects of Caregiving
Abstract
Background: Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. Epilepsy affects 1 in 26 Americans and when epilepsy occurs after traumatic brain injury (TBI), it is considered post-traumatic epilepsy (PTE). Patients with PTE frequently have an informal caregiver – family or friends who provide unpaid help with chronic conditions or disabilities – to assist with a variety of tasks and activities. These informal caregivers are a vital source of support for many Service members/Veterans with PTE. New national initiatives like the Campaign for Inclusive Care aim to incorporate the caregiver into the Veteran’s treatment plan to support the care of the Veteran at home. However, we know little about the impacts of caregiving – both positive and negative – on the caregivers themselves and on the Service members and Veterans (hereinafter referred to as Veterans, as all Service members are Veterans) for whom they provide care. The goal of this study is to evaluate the health, wellbeing, and quality of life of Veterans with PTE; examine the impact of patient characteristics and caregiving experiences on caregiver health, wellbeing, and quality of life; and determine if these findings are unique to Veterans with PTE. Because use of supports and services may affect caregiver and Veteran outcomes, we will also collect information on supports and services used by Veterans and caregivers, and identify what they consider to be unmet needs. We will address these goals with three specific aims: Aim 1: Describe and compare the health and quality of life of Veterans and caregivers of Veterans with and without PTE. Aim 2: Evaluate the change in available supports and unmet needs for services among caregivers of post-9/11 Veterans with PTE over a 2-year period. Aim 3: Identify Veteran and caregiver characteristics associated with the 2-year health trajectories of caregivers and of Veterans with PTE compared to Veterans without PTE. Hypotheses: Based on existing information, we expect that caregivers of Veterans with PTE will encounter unique challenges in their caregiving role, and that challenges are even more common among those who care for Veterans with PTE and associated conditions like headache, depression, anxiety, etc. We also think they may have higher levels of burden than other caregivers, which could negatively impact their health. Finally, we think that the health of caregivers can impact the health of the Veteran they are caring for. Research Strategy: To examine these questions, we will follow Veterans and caregivers that have been engaged with our research team for other projects. This allows us to use their prior data, and build a more diverse group of Veterans and caregivers, including Veterans who may not receive Department of Veterans Affairs (VA) healthcare. From these other studies, we will create four groups of Veterans and their caregivers: those with PTE, those with epilepsy and no TBI (non-traumatic epilepsy), those with TBI only, and those with no epilepsy/TBI. We will recruit Veterans from our previous studies and ask them to identify all of their caregivers. We will then ask questions of both the Veteran and their primary caregiver about their health, quality of life, unmet needs for care, relationship, and other experiences. They will complete a survey at the start of the study, and we will ask them to share brief reports on experiences, symptoms, health conditions, services used, and unmet needs over the next 2 years. We also will ask some of them to participate in interviews to better understand the unique impact of PTE on Veteran and caregiver health, wellbeing, and quality of life. Impact: This study will directly contribute to the Epilepsy Research Program’s mission “to understand PTE and associated comorbidities to improve quality of li
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Mar 10, 2021
- Source ID
- W81XWH2010764
Entities
People
- Mary Jo V Pugh
Organizations
- United States Army
- University of Utah