Military and Veteran Literature
Griffin and colleagues conducted the Family and Caregiver Experience Study (FACES) with caregivers (N = 564) of service members who incurred a TBI.3 According to the caregivers, two-thirds of the patients lost consciousness for more than 30 minutes, which was followed by inpatient rehabilitation care at a VA polytrauma center between 2001 and 2009. The majority of caregivers of TBI patients were female (79%) and aged < 60 years (84%). Parents comprised 62% and spouses 32% of the cohort. Caregivers tended to have some level of education beyond high school (73%), were married (77%), either worked or were enrolled in school (55%), and earned less than $40,000 a year (70%). Common characteristics of the care receivers were male gender (95%), average age 30, high school educated (52%), married (almost 50%), and employed (50%). Forty-five percent of the care receivers were injured 4 to 6 years prior, and 12% were injured 7 or more years prior. The study determined the caregivers’ perception of intensity of care needed and indicated that families as well as clinicians need to plan for some level of long-term support and services.
In addition to the TBI-related caregiving needs, Griffin and colleagues found in a military population that other medical conditions impacted the level of caregiving and strained a marriage.18 Their study found that in a military population between 30% and 50% of marriages of patients with TBI dissolved within the first 10 years after injury. Caregivers may need to learn nursing activities, such as tube feedings, tracheostomy and stoma care, catheter care, wound care, and medication administration. Family stress with caregiving may interfere with the ability to understand information related to the care receivers’ medical care and may require multiple formats to explain care needs. Sander and colleagues associated better emotional functioning in caregivers with greater social integration and occupation outcomes in patients at the postacute rehabilitation program phase (within 6 months of injury).19 However, these outcomes did not continue more than 6 months postinjury.
Intervention and Research Studies
Powell and colleagues used a telephone-based, individualized TBI education intervention along with problem-solving mentoring (10 phone calls at 2-week intervals following patient discharge for moderate-to-severe TBI from a level 1 trauma center) to determine which programs, activities, and coping strategies could decrease caregiver challenges.20 The telephone interventions resulted in better caregiver outcomes than usual care as measured by composite scores on the Bakas Caregiving Outcomes Scale (BCOS) and the Brief Symptom Inventory (BSI-18) at 6 months post-TBI survivor discharge. Dyer and colleagues explored Internet approaches and mobile applications to provide support for caregivers. 18 In a small sample of 10 caregivers, Damianakis and colleagues conducted a 10-session pilot videoconferencing support-group intervention program led by a clinician. Results indicated that the intervention enhanced caregiver coping and problem-solving skills.7
Petranovich and colleagues examined the efficacy of counselor-assisted problem-solving interventions in improving long-term caregiver psychological functioning following TBI in adolescents.21 Their findings support the utility of online interventions in improving long-term caregiver psychological distress, particularly for lower income families. Although this study focused on adolescents, research may indicate merit in an adult population. In relatives of patients with severe TBI, Norup and colleagues associated improvements in health-related quality of life (HRQOL) with improvements in symptoms of anxiety and depression without specific intervention.22
Moriarty and colleagues conducted a randomized controlled trial for veterans who received care at a VA polytrauma center and their family members who participated in a veteran’s in-home program (VIP) intervention.9 The study aimed to evaluate how VIP affected family members’ caregiver burden, depressive symptoms, satisfaction with caregiving, and the program’s acceptability. Eighty-one veterans with a key family member were randomized. Of those, 63 veterans completed a follow-up interview. The intervention consisted of 6 home visits of 1 to 2 hours each and 2 telephone calls from an occupational therapist over 3 to 4 months. Family members were invited to participate during the home visits. The control group received usual clinic care with 2 telephone calls during the study period. All participants received the follow-up interview 3 to 4 months after baseline interviews. The severity of TBI was determined by a review of the electronic medical record using the VA/DoD Clinical Practice Guidelines. Findings of this study indicated that family members in the intervention group showed significantly lower depressive symptom scores and caregiver burden scores.9 Additionally, the veterans in the intervention group exhibited higher community integration and ability to manage their targeted outcomes. Further research may indicate that VIP could assist patients with TBI and caregivers in an active-duty population.
The DVBIC is the executive agent for a congressionally mandated 15-year longitudinal study on TBI incurred by members of the armed services in OEF and OIF. The John Warner National Defense Authorization Act for Fiscal Year 2007 outlined the study. An initial finding identified the need for an HRQOL outcomes assessment specific to TBI caregivers.23 Having these data will allow investigators to fully determine the comprehensive impact of caring for a person who sustained a mild, moderate, severe, or penetrating TBI and to evaluate the effectiveness of interventions designed to address caregivers’ needs. To date, the study has identified the following HRQOL themes generated among caregivers: social health, emotional health, physical/medical health, cognitive functioning, and feelings of loss (related to changing social roles). Carlozzi and colleagues noted that the study also aimed to identify a sensitive outcome measure to evaluate quality of life in the caregivers over time.7