Education and Skill-Building Interventions for Caregivers of Adults With Traumatic Brain Injury (2013–2020)

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 education and skill-building 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 caregiver’s 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

Five articles related to education and skill-building interventions for caregivers of people with TBI were included in the review (Table 1). These five articles were further divided into three categories, depending on the method of delivery. The levels of evidence used in this review are from Oxford Centre for Evidence-Based Medicine (2009).

Table 1.

Evidence Table for Education and Skill-Building Interventions for Caregivers of Adults With Traumatic Brain Injury

Author/Level of Evidence	Intervention	Statistically Significant Improvement Resulting from Intervention
Face-to-Face Individualized Interventions One Level 2B RCT that implemented face-to-face individualized interventions for the caregiver to improve the caregiver’s knowledge and skills related to providing care for an adult with TBI met the inclusion criteria for this systematic review. Low strength of evidence supports this type of intervention.
Niemeier et al. (2019) Level 2B—RCT Setting Inpatient Rehabilitation Country USA	Population Caregiver of an adult with a TBI undergoing acute brain injury rehabilitation, N = 93 Intervention Manualized Intervention for caregivers of patients with TBI during inpatient rehabilitation that focused on skill building and gaining knowledge. Caregivers were taught skills on problem solving, communication and advocacy, common consequences of TBI and its effect on the family, and how to access community resources through the use of education, stress and anxiety management, coping, and emotional support. Delivery Method Individual inpatient setting Dose Five 1-hr sessions with first 3 during inpatient and remaining 2 following discharge	The caregivers in the intervention group reported significant improvements in perceived met needs on instrumental support, emotional support, and professional support within group and significant improvements with emotional support between groups from baseline to posttreatment. There was also a significant improvement in caregiver knowledge within the group and between the groups from baseline to posttreatment.
Face-to-Face Group Interventions Two Level 1B RCTs that used face-to-face group interventions, which include the caregiver and the person with TBI, to improve caregiver’s knowledge and skills related to providing care for an adult with a TBI met the inclusion criteria for this systematic review. Moderate strength of evidence supports this type of intervention.
Brown et al. (2015) Level 1B—RCT Setting Community Based Country USA	Population Family member/significant other of a person with TBI, N = 257 Intervention Curriculum-based advocacy training including video and written advocacy skills was compared with a self-directed advocacy group (support group). There were three categories of subjects: pairs of people with TBI and their partner/family, a person with TBI, partner/family of a person with a TBI. Stratified randomization was used to ensure people with TBI and their families were equal in both groups. There were a variety of topics covered in the curriculum and was adapted based on staff and participant feedback after each session. Delivery Method Face-to-face groups Dose 1 day/mo for 4 consecutive mo, 6-hr sessions	There was no significant improvement found for improving advocacy skills between the intervention and control group.
Kreutzer et al. (2015) Level 1B—RCT Setting Outpatient Country USA	Population Caregivers of a person with ABI (>50% TBI), N = 108 Intervention BIFI provided family sessions focused on topics including coping, communication, and stress management. Included family education, skill building, and psychological support. Delivery Method Family sessions, community based Dose Two hr, 5 sessions, 10-wk period	The intervention group had significantly better outcomes than the control. The caregivers in the intervention group reported significant decreases in service obstacles within groups indicating greater satisfaction with services available from baseline to posttreatment and sustained at 3-mo follow-up. There were also improvements in perceived met needs on health information, emotional support, professional support, and community support within groups and significant improvements with emotional support between groups from baseline to posttreatment with professional and emotional support sustained at 3-mo follow-up from baseline.
Online/Telephone Interventions Two Level 1B RCTs that used online/telephone interventions to improve caregiver’s knowledge and skills related to providing care for an adult with TBI met the inclusion criteria for this systematic review. Strong strength of evidence supports this type of intervention.
McLaughlin et al. (2013) Level 1B—RCT Setting Remote Web Based Country USA	Population Family member of an adult with TBI, N = 201 Intervention The BIP was a self-directed website that caregivers would use for advocacy skills needed for effective communication including active listening and problem solving, help users find services and supports, provide strategies for reducing stress, and determine necessary supports. Delivery Method Individual, on-line, self-directed Dose Minimum of 30 min for 10 days.	Family members in the intervention group reported significant improvements for skill application, knowledge, and advocacy skills between groups from pre- to posttreatment and sustained at follow-up.
Powell et al. (2016) Level 1B—RCT Setting Remote-Telephone Based Country USA	Population Caregiver of person with moderate-to-severe TBI, at least 1 yr relationship and assumes primary responsibility, N = 153 Intervention Individualized telephone-based education and mentored problem-solving intervention focused on caregivers’ primary concerns and topics related to caregiving and TBI. The intervention focuses on improving self-effectiveness and problem solving Delivery Method Individual, telephone Dose Ten phone calls at 2-wk intervals.	The caregivers in the intervention group reported significant improvements with feeling more able to get support from friends and family, getting help they need from healthcare providers, taking care of their own health, and having more people to help them with caregiving between groups. There was also a significant improvement between groups with active coping, less emotional venting, and less use of humor in dealing with life stressors since the time of injury (could be reflective effective problem solving).

Note. ABI = acquired brain injury; BIFI = Brain Injury Family Intervention; BIP = Brain Injury Partners Program; RCTs = randomized controlled trials; TBI = traumatic brain injury.

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). Families are often unprepared and lack the capacity to take on the role of being a caregiver without proper education and skill training. This is often because of the lack of preparation or knowledge about TBI, increased burden of care that affects a caregiver’s overall health and well-being, and lack of support and resources (Everhart et al., 2020). This review provides evidence that education and skill-building interventions focused on problem solving, stress management, communication, active coping, advocacy, accessing the community and resources, and how TBI affects family functioning improved caregiver knowledge and skill application to facilitate the role of caregiving. The method of delivery is important to consider for intervention implementation. Low strength of evidence exists for practitioners to use face-to-face individualized interventions, but strong evidence exists for practitioners to use face-to-face group interventions and online/telephone interventions. Providing education and skill training is effective beginning as early as during the acute inpatient rehabilitation hospital and later in the recovery process in the outpatient community setting (Kreutzer et al., 2015; Niemeier et al., 2019). These interventions (e.g., stress and anxiety management, coping, emotional support, problem solving, communication, advocacy, consequences of TBI and effect on family, and accessing resources) are effective at improving the caregivers’ perceived met needs and perception of available supports in face-to-face individualized and group (Kreutzer et al., 2015; Niemeier et al., 2019), and with telephone/online sessions, which can extend services to caregivers that are cost effective and time efficient (McLaughlin et al., 2013; Powell et al., 2016). In addition, education and skill-building interventions can improve a caregiver’s advocacy behavior and skills (Brown et al., 2015). A curriculum-based advocacy training intervention is effective at improving caregiver advocacy behavior in a face-to-face group setting or through a self-directed online program (Brown et al., 2015; McLaughlin et al., 2013). Practitioners should provide education, skill-building, and support interventions for the caregiver to increase knowledge, skill application, advocacy skills, coping skills, and perceived supports.