Improving Quality of Life and Emotional Well-Being for Caregivers of Adults With Traumatic Brain Injury

SIGNIFICANCE: Although the importance of the social environment is well recognized by occupational therapists, rehabilitation efforts are typically focused on the individual patient’s recovery with little attention paid to the health and wellness of those who provide care following discharge. This study provides evidence for the efficacy of a problem-solving and education intervention to improve quality of life and emotional well-being of caregivers of survivors of traumatic brain injury (TBI) with the potential for wide-spread application to other chronic conditions.

INNOVATION: In this research, we substantially broaden previous approaches to addressing caregiver challenges by (1) combining problem-solving and education interventions, (2) delivering the intervention solely by telephone, (3) targeting caregivers early on in the recovery process, and (4) using caregiver perspectives to develop the intervention. This study also demonstrates how an intervention can be individualized within a research paradigm.

APPROACH: In this study, we attempted to answer the following research question: Does a telephone-based, individualized, mentored, problem-solving and education intervention improve quality of life and emotional well-being of caregivers of persons with TBI as compared to usual care?

With current health care trends limiting hospital stays, survivors of TBI are discharged home with more deficits, imposing a heavy care burden on family and friend caregivers. Although some caregivers report positive aspects to caring for a TBI survivor, many report depression, anxiety, social isolation, somatic symptoms, and marital stress.

METHOD: We used a randomized controlled trial with blinded outcome assessment at 6-mo postcommunity discharge. Intervention group caregivers received up to 10 phone calls consisting of mentoring in a rational problem-solving approach to address the caregiver’s current primary concern along with relevant educational material. Participants included caregivers of adults with moderate-to-severe TBI who had received acute and/or rehabilitation care at a Level I trauma center.

The primary outcome measure was a composite of the Bakas Caregiving Outcomes Scale (BCOS) and the Brief Symptom Inventory (BSI). The secondary measure included the Brief Coping With Problems Experienced (COPE). Data were analyzed on an intent-to-treat basis. The primary outcome was calculated by ranking all responses for the two measures and converting those into the percentage at or below the person’s score. The relationship of the average percentile to assigned treatment group was assessed by linear regression.

RESULTS: We randomized 153 caregivers, with 80% assessed at 6 mo. Intervention group participants endorsed significantly better quality of life and emotional well-being on the BCOS/BSI composite score (p = .032). They were more able to get support from family and friends (p = .019), get help from health care providers (p = .027), and take care of their own health (p = .046). They reported using significantly more active coping (p = .020) and significantly less venting (p = .028) in managing life stressors.

CONCLUSION: This approach may be helpful in supplementing the limited support typically offered to caregivers of TBI survivors. Although providing interventions by telephone could extend services to those with transportation or other access barriers and could conceivably be more cost-effective than in-person services, further research is needed to determine viable real-world service delivery models.