Abstract
Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association’s Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings from the systematic review on interventions for caregivers of persons with traumatic brain injury that facilitate participation in the caregiver role.
Full Systematic Review Question
This systematic review addressed the question “What is the evidence for the effectiveness of interventions for caregivers of persons with TBI that facilitate participation in the caregiver role?”
Current Theme Reported
The main theme of the studies included in this systematic review brief is health and well-being interventions for caregivers of adults with traumatic brain injury.
Clinical Scenario
According to the Centers for Disease Control and Prevention (CDC, 2021a), 2.9 million Americans were diagnosed with traumatic brain injury (TBI) in 2014. A person with TBI may experience long-term changes in cognition, physical abilities, emotions, and behavior as well as many other chronic health problems (CDC, 2021b). Because of these changes and chronic health problems, approximately 33% of people with moderate-to-severe TBI require assistance with everyday activities from someone else (CDC, n.d.); typically a family member serves as the caregiver. Providing long-term care to a person with TBI can impact the caregiver’s stress (Ikiugu et al., 2021; Suntai et al., 2021), perceived burden (Brickell et al., 2019), health and well-being (Ikiugu et al., 2021), satisfaction with life (Sabella & Suchan, 2019), and can be problematic or stressful on the relationship between the person with TBI and their caregiver (Brickell et al., 2022). Poor preparation, increased burden, and lack of resources may impact the caregiver’s ability to provide the care needed (Everhart et al., 2020) and impact the caregivers’ overall health and well-being. Occupational therapy practitioners are uniquely qualified to assess and provide interventions that address the needs of the caregiver, including physical and mental health and well-being, and to facilitate the role of caregiving (American Occupational Therapy Association [AOTA], 2020).
Summary of Key Findings
Seven Level 1B randomized control trials (RCT), 1 Level 2B RCT, and 1 Level 3B study met the criteria for inclusion in this systematic review and related to interventions that addressed the health and well-being of caregivers through the use of individual, group, online, home visit, telephone, or a combination of modes of delivery of interventions (Table 1). These 9 articles were further divided into 3 categories, depending on the participants included in the interventions. The levels of evidence used in this review are from Oxford Centre for Evidence-Based Medicine (2009).
Evidence Table for Health and Well-Being Interventions for Caregivers of Adults With Traumatic Brain Injury
Note. ABI = acquired brain injury; BIFI = Brain Injury Family Intervention; CAPS = Counselor-Assisted Problem Solving; IRC = internet resource comparison group; RCTs = randomized controlled trials; TBI = traumatic brain injury; VIP = veterans in home program.
Bottom Line for Occupational Therapy Practice
Occupational therapy practitioners can assess and provide interventions for caregivers of people with TBI that facilitate the role of caregiving (AOTA, 2020). Caregivers are often unprepared to take on the role of being a caregiver and will often neglect their own health and well-being to meet the needs of the person with TBI. Over time, the health and well-being of the caregiver may be affected, and caregivers often experience stress and strain, depression, distress, and burden. According to Tay and He Kong (2020), approximately 70% of the family caregivers in their study experienced significant caregiver burden, 10% experienced depression, and 16.7% had anxiety. This review provides strong evidence to support interventions that address the health and well-being of caregivers which can improve caregiver participation. These interventions can be completed with the caregiver individually or with the person with TBI and have been found to be effective in groups, home visits, on the telephone, online, and a combination of modes of delivery. There is strong evidence to support the caregiver receiving interventions individually to improve emotional well-being, strain, and criticism in either a face-to-face group session (Fortune et al., 2016) or on the telephone (Powell et al., 2016). However, Niemeier and colleagues (2019) found that a multifamily group treatment completed partially during inpatient and within a month following discharge that focused on skill building and gaining knowledge was not effective at reducing caregiver burden. This may be because of the timing of the intervention as this study has the shortest duration of intervention or the location as this was the only one that began during inpatient rehabilitation. Caregiver burden is highly related to the person with TBI’s level of impairment and types of symptoms experienced (Brickell et al., 2019), with cognitive dysfunction, behavioral and functional impairment being related to increased caregiver burden (Devi et al., 2020). There is also strong evidence to support family-based interventions (e.g., caregiver and person with TBI) to improve caregiver burden and empowerment with face-to-face groups (Kreutzer et al., 2015), telephone, home visits (Moriarty et al., 2016), and a combination of those interventions (Perlick et al., 2013). The majority of the caregivers were either spouses, significant others, or a family member. However, there were several studies that included parents as the primary caregiver of adolescents with TBI (Petranovich et al., 2015; Wade et al., 2014; Wade et al., 2019). There was strong evidence to support the parents participating in individual problem-solving interventions that were therapy directed online with home visits (Petranovich et al., 2015; Wade et al., 2019). These interventions were shown to improve parental distress and depression. Practitioners should provide interventions that address symptoms and burden experienced by caregivers to address the overall health and well-being of the caregiver to facilitate participation in the caregiver role.
Footnotes
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Indicates articles included in the systematic review brief.