The report is a product of the VA/HSR&D Evidence Synthesis Program.
Systematic Review: Interventions to Support Caregivers or Families of Patients with TBI, PTSD, or Polytrauma
Family members perform a significant service caring for Veterans with severe physical, mental, and cognitive impairments. A family caregiver may be defined as "any relative, partner, friend or neighbor who has a significant personal relationship with -- and provides a broad range of assistance for an older person or an adult with a chronic or disabling condition." Family caregivers of post-9/11 Veterans may face unique challenges in that they are younger, and more likely to be actively managing work and raising children while also performing caregiving tasks. Depending on the injuries and health conditions, the need for family caregiving support can last for decades.
Systematic support and training that takes into account individual contexts, preferences, and needs may help family caregivers to facilitate Veteran recovery processes at home; however, research has focused most often on recipients with cognitive or memory disorders and illnesses such as cancer. Thus, there is a need to better understand the impact of interventions that support caregivers or families of patients with disabling conditions common among Veterans. This systematic review describes the volume of published literature evaluating the effects of family caregiving support programs for patients with traumatic brain injury (TBI), post-traumatic stress disorder (PTSD), or polytrauma (injuries to multiple body parts and/or organ systems), and assesses the effect of these programs on caregiver, patient, and household outcomes.
Investigators with VA's Evidence-based Synthesis Program Center located in Durham, NC searched MEDLINE®, CINAHL, and PsycINFO through December 19, 2016. After reviewing more than 2,800 citations, they identified 13 studies that evaluated family caregiving interventions of patients with TBI (n=9) or PTSD (n=4). Investigators did not identify any studies that had enrolled patients with polytrauma. Of these studies, 10 were randomized controlled trials (RCTs), 2 were non-randomized trials, and 1 was an interrupted time series design. Most studies were conducted in the United States (n=10) and 4 included Veterans.
Summary of Findings
The most commonly utilized intervention component was illness education. Other commonly used components included skills training, social support, and therapy. No interventions were found that provided financial assistance. While individual interventions varied in delivery type, delivery mode, and intensity, most interventions aimed to address similar problems, including:
- Reducing caregiver burden,
- Enhancing family function,
- Improving clinical care and the home environment,
- Improving condition-specific symptoms, and
- Increasing family knowledge about healthcare resources.
The studies showed a mixed pattern of intervention effects on caregiver or patient outcomes. Couples-based therapy improved Veterans' PTSD symptoms (moderate evidence) and interpersonal relationships as reported by the patient (low strength of evidence). Other interventions improved caregiver burden and psychological symptoms (moderate to low strength of evidence) but did not improve outcomes for patients with TBI (moderate to very low strength of evidence). Adverse intervention effects and household economic outcomes were not reported. Strength of evidence was rated on the basis of study design, risk of bias, inconsistency, indirectness, and imprecision. Overall, the evidence about the impact of these interventions on patient and caregiver outcomes is inconclusive given the small literature, few patients, and the heterogeneity of intervention format, delivery, intensity, family involvement, and outcomes. Yet, for several outcomes, such as caregiver burden and psychological symptoms, caregiver interventions may be a promising approach. The positive impact of caregiver interventions on caregiver distress aligns with some prior reviews across a variety of patient conditions; however, there remain considerable gaps.
Clinical and Policy Implications
These findings are similar to those of prior high-quality, ESP systematic reviews that examined the impact of interventions for caregivers of patients with mental illness, cognitive impairment, and cancer on both caregiver and patient outcomes. Collectively, they suggest some promise for effects of multicomponent interventions for the burdens on caregivers and quality-of-life outcomes.
For the VA healthcare system, there are likely some lessons learned about intervention delivery and outcome measurement that could inform research and implementation efforts, particularly the content and delivery of these components. For example, it may be more effective to focus on one or two outcome goals and then refine content, delivery strategy, target participant (patient vs caregiver), and intervention intensity to specifically address those outcomes. In addition, important patient- and caregiver-centered outcomes may be difficult to quantify, and several studies questioned whether short-term follow-up periods (i.e., one year or less) are sufficient to identify changes in outcomes.
Research Gaps/Future Research
No evidence was found for effects in patients with polytrauma, and there was sparse evidence in patients with PTSD. There also was no evidence on which caregivers and patients are most likely to benefit -- or on the effect of financial support, a strategy being implemented in VA for Veterans through the Program for Comprehensive Assistance for Family Caregivers (PCAFC) and the Veteran Directed Care program. For other types of interventions, there is uncertainty about the relationship between outcomes and intervention dose, mode of delivery, and components. Outcome measures varied greatly across studies, and there was high heterogeneity in most studies. More theoretical models are needed to inform discrete study goals, intervention designs, testable hypotheses, and explanations for the observed findings. Such theoretical models would provide a benchmark for more in-depth analysis about what did and did not work, thus moving the field forward.
Focusing on this review, a cyberseminar titled "Evidence-based Synthesis: Interventions to Support Caregivers or Families of Patients with TBI, PTSD, or Polytrauma" will be held on Wednesday, December 13, 2017 from 1:00pm to 2:00pm (ET). Register here.
View the full report
Shepherd-Banigan ME, McDuffie JR, Shapiro A, Brancu M, Sperber N, Mehta NN, Van Houtven CH, Williams JW Jr. Interventions to Support Caregivers or Families of Patients with TBI, PTSD, or Polytrauma: A Systematic Review. VA ESP Project #09-009; 2017.
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