|
BACKGROUND/RATIONALE:
As of May, 2007, nearly 26,000 service members have been killed or wounded in action in the wars in Iraq (Operation Iraqi Freedom, OIF) and Afghanistan (Operation Enduring Freedom, OEF) and thousands of those were wounded by blasts. Most blast injuries result in polytrauma (PT), meaning injuries to multiple body systems or organs (e.g., amputation, burns, vision loss). Traumatic brain injuries (TBI) are one of the most common injuries among those with polytraumatic injuries. According to Defense and Veterans Brain Injury Center's (DVBIC) website, in times of peace, over 7,000 Americans with traumatic brain injury (TBI) are admitted to military or veterans hospitals each year. This number has dramatically increased since the start of OIF/OEF. In prior conflicts, TBI was present in at least 14-21% of combat casualties. By contrast, in a recent sample of patients from the present conflict who were screened by the DVBIC at Walter Reed Army Medical Center, 62% were found to have TBI.1 The prevalence of TBI among OIF/OEF service members is so high it is now considered the "signature injury" of the present conflict.2
Patients with TBI and polytraumatic (TBI/PT) injuries are relatively young compared to most VA patients seen for TBI or rehabilitation. Because of the severity and complexity of these patients' injuries, they will require life-long outpatient health care and community services, support for activities of daily living as well as varying degrees of caregiving and support to coordinate their on-going care and activities.3 Little is known about who is providing their informal, unpaid care, how much and what kind of care they require, or how the challenges of caregiving in both the short and long-term will affect caregiver and family health. Likewise, little is known about how informal care will affect this clinically complex and demographically unique group of patients and their short- and long-term health. Even in the TBI literature, which is guiding much of the research on polytrauma, there is little evidence showing how caregiving affects TBI patient outcomes.4 Research involving other patient populations, however, such as stroke and dementia shows that caregiving improves health outcomes for chronically ill patients; therefore, it is likely that caregiving will affect TBI/PT patient health as well.5;6 The goal of this study is to address the existing gaps in the evidence base about caregiving for OIF/OEF patients with TBI/PT by determining the relationships between caregiving and caregiver, family and patient health. It is the necessary first step that will allow the VA to develop efficient and effective interventions to support caregivers and, in turn, will improve outcomes for both TBI/PT patients and their caregivers.
OBJECTIVE(S):
Objective 1: Describe quantitatively who cares for TBI/PT patients, what caregiving tasks caregivers perform, and the resources they have and use.
Objective 2: Determine if caregiver strain is associated with 2 primary patient outcomes (i.e., community integration and problematic substance use). We also will determine whether caregiver strain is associated with patient re-injury, caregiver outcomes (i.e., health-related quality of life, physical and mental functioning, and depression and anxiety symptoms) and family outcomes (i.e., increased rates of divorce among caregiver and patient marriages, greater family discord).
H1a. Caregiver strain will have a direct and deleterious effect on patient's community integration and problematic use of substances.
H1b. Caregiver strain will have a direct and deleterious effect on patient re-injury, caregiver health-related quality of life (HRQOL), caregiver depression and anxiety symptoms, and family divorce and discord.
Objective 3: Assess whether the objective demands of caregiving and other life demands are significantly associated with caregiver strain, independent of relevant demographic variables and resources.
H2. Objective demands of caregiving and other life demands will be significantly associated with caregiver strain, independent of relevant demographic variables and resources.
Objective 4: Determine which resources and resiliency factors moderate the impact of caregiving demands on caregiver strain.
H3a. Instrumental resources (i.e., receipt of benefits/services and financial resources) will moderate the relationship between objective demands and other life demands on patient, family and caregiver outcomes.
H3b. Social resources (i.e., social integration, support, and family functioning) will moderate the relationship between objective demands and other life demands on patient, family and caregiver outcomes.
H3c. Caregiver resources (i.e., mastery, coping, boundary ambiguity, and choice to provide care) will moderate the relationship between objective demands and other life demands on patient, family and caregiver outcomes.
Objective 5: Qualitatively acquire an in-depth, elaborated, and contextual understanding of caregiving in order to aid the interpretation of the quantitative findings; uncover new areas that are relevant to caregiver and patient experiences and outcomes that could not be considered due to the constraints of quantitative methods; and, inform the selection of interventions to improve outcomes for patients, caregivers and their families.
METHODS:
In the first year of this study we will conduct cognitive interviews and a pilot survey to refine the initial survey instrument.
Cognitive Interviews: We will first test all survey questions using cognitive interviewing techniques and a pilot survey. The cognitive interview is intended to uncover ambiguous and misleading questions, but also the level of complexity and thought that goes into understanding and answering questions. Family members serving on the Advisory Board members will take part in the cognitive interview phase. Questions revealed to be ambiguous, awkward, unclear, or that add to respondent burden based on the cognitive interviews will be reworded or removed.
Part 1: Because caregivers are not likely to be patients at the VA, the VA has no data on them, thus, the study population will be identified via patient administrative records. This presents a challenge to recruiting the study population. Therefore, we propose to test our study protocol, and in particular the recruitment strategies, in a pilot survey. Item analyses also will be conducted using the pilot data and will both inform reduction of the length of the survey as well as identify any difficulties in the instrument's layout (e.g., difficult skip patterns) and examine possible issues of item non-response within certain measures.
In an effort to retain the caregivers of the complete TBI/PT population that has been treated at the PRCs, we will survey for the pilot caregivers of patients with TBI who are similar demographically to the TBI/PT population. All non-OEF/OIF patients with TBI that have undergone inpatient rehabilitation treatment but did not have multiple traumatic injuries and thus, were not treated at a polytrauma rehabilitation center (PRC) will be identified through VA administrative records. Next of kin for each patient will be identified from patient records and will be contact by mail and asked to either complete the enclosed survey if they consider themselves to be the primary caregiver, or nominate the appropriate caregiver. If necessary we will expand the time period prior to 2001 in order to reach an adequate sample (n>50) to test recruitment strategies. As with the main survey, patients will be contacted and asked to nominate a primary caregiver. That caregiver will then receive the pilot survey. While we expect that data from the pilot survey will primarily be used to refine the study protocol, it will also provide cross-cutting information about injured veterans from other eras and their caregivers who many not have the same resources available to them as OIF/OEF veterans.
Part 2: All OEF/OIF patients with TBI/PT that have been discharged from each PRC for at least 3 months beginning in 2001 until the date of the survey will be identified. Patients who have been discharged will be identified through VA administrative records. Next of kin for each patient will be identified from patient records and will be contact by mail and asked to either complete the enclosed survey if they consider themselves to be the primary caregiver, or nominate the appropriate caregiver.
Part 3: Part 3 will include an in-depth interview with a small sample of primary caregivers. We will use a stratified purposeful sample of 16 family members who have completed the mailed survey. Strata will include gender (male and female) and kinship (parents and spouses).We will purposefully select and recruit caregivers by PRC catchment area, first recruiting for the Minneapolis PRC catchment area since this is the area closest to the interviewers. We will recruit from additional sites only if we are not able to reach our sample requirements in the Minneapolis catchment. We will inform the potential interviewee that she/he will be contacted by telephone in the near future to discuss this portion of the study in detail, answer any questions they might have, and request their participation. Upon verbal agreement to be interviewed, we will mail a copy of the consent form for their review. A signed informed consent, which will be obtained in-person from each participant before beginning the interview, will request permission to conduct and audio-record the individual in-person interviews.
FINDINGS/RESULTS:
Enter text here.
IMPACT:
The market value of informal caregiving for the chronically ill patient is often ignored although it may very well be considered the "invisible" health care sector. Direct medical costs and indirect costs of TBI, including loss of productivity, totaled an estimated $56.3 billion in 1995 in the United States.48 The national economic value of informal caregiving was estimated to be $197 billion in 1997. This figure dwarfs national spending for formal home health care estimated at $32 billion and nursing home care at $83 billion for 1997.49 Informal caregivers provide supportive assistance to patients with disabilities which reduce formal healthcare costs. Providing supportive services to caregivers will most likely help reduce the care costs for patients with TBI/PT as they will require less use of emergency care, institutionalization, and VHA services, while also improving caregiver and patient outcomes. In addition to providing direct informal care and assistance to TBI/PT patients, caregivers are a key link in navigating and coordinating the VA and community services and benefits that, together, promote successful rehabilitation and community integration. Since the availability and quality of informal care can reduce institutionalization rates, diminish utilization of urgent care services, and improve efficient coordination of community services and benefits with VA services and benefits, interventions that support and enhance family members' ability to assist the TBI/PT patient are likely to be highly efficient for VHA.
Our ability to design and implement effective and efficient interventions currently is severely hampered by immense gaps in the knowledge base regarding TBI/PT patients and their informal caregivers. This dearth of needed information results both from the relatively limited body of knowledge on TBI caregivers in general, and the unique characteristics of OIF/OEF TBI/PT patients. We know very little about caregivers of TBI/PT patients, and even less about their experiences, resources, needs and the impact of caregiving on both the patients' and caregivers' physical and psychosocial health. Thus, we currently have no basis to make informed choices regarding the most appropriate intervention objectives. Common intervention objectives include, but are not limited to: providing caregivers with the knowledge and skills needed to be effective caregivers and coordinate services; enhancing social support to buffer them from stress and improve social resources; providing mental health services; enhancing general coping skills to reduce stress-related strain; providing family education and therapy to improve family functioning; and increasing availability of direct instrumental and material resources. However, we lack the information needed to determine which of these approaches, or which combination, would be the most effective and efficient. In addition, it is very likely that intervention needs will vary by time since injury and by some set of patient, caregiver, or family characteristics, yet we have no idea what characteristics are important and relevant to choice of intervention.
Our study will contribute to the knowledge base in several ways. First, although there is ample evidence that caring for a TBI patient is burdensome for caregivers, such evidence is based for the most part on studies relying on caregiver-patient participants during acute inpatient rehabilitation and recent discharge. Our study will expand our understanding of the factors that contribute to caregiver burden by including caregivers of patients who have a range of intervals since discharge (anywhere from three months to several years, post-injury). Second, the research proposed will also fill an unacceptable gap in our knowledge regarding the associations between caregiver outcomes and TBI/PT patient outcomes. This knowledge is likely to be applicable to other rehabilitation populations such as TBI, spinal cord injury and stroke, whom often require long-term caregiving with complicated care tasks. Third, although our study is currently cross-sectional and, therefore, can test for association but not for directions of causality, it will create a cohort that can be followed longitudinally to test causal hypotheses. Finally, our study will lay the foundation to design caregiver intervention programs that could be implemented by the VA Office of Care Coordination, the Patient Care Services Task Force, the VA's Physical Medicine and Rehabilitation clinical leaders and champions, the Polytrauma System of Care providers at the PRC and Network Sites.
PUBLICATIONS:
None at this time.
DRA:
Acute and Traumatic Injury, Health Services and Systems, Military and Environmental Exposures
DRE:
Rehabilitation, Treatment, Quality of Care
Keywords:
Caregivers – not professionals, PTSD, Traumatic Brain Injury
MeSH Terms:
none
|
