Setting a research agenda for caregiving after neurotrauma and neurological disability

2.1Literature reviews

In the first article, Kjeldgaard, Soendergaard, Wolffbrandt, and Norup (this issue) reviewed 24 published studies that holistically found that brain injury caregivers had higher burden if they cared for an individual with more severe injuries, decreased physical and neuropsychological functioning, and lower mental health. Caregivers also had higher burden if they spent more time caregiving, had greater unmet needs, and had lower mental health themselves. The authors suggested that future intervention research target brain injury caregivers with these specific characteristics given the risk for increased burden. They also suggested that future research focus on caregiver coping style, problem-solving ability, and personality which are relatively understudied areas in the caregiving literature.

Hines et al. (this issue) reviewed 18 published studies on resilience interventions for individuals with acquired brain injury and their caregivers. The authors found that dyadic and caregiver resilience interventions can improve heterogeneous mental health outcomes, but unfortunately lack of a standardized conceptualization or index of resilience limited the generalizability of these interventions. The authors argued that acquired brain injury caregiver- or dyadic-specific conceptualization and measurement of resilience in intervention studies would help the field better assess the effects of these interventions.

2.2Empirical studies

Rasmussen, Howe, Andelic, and Soberg (this issue) used a structural equation model in a sample of 60 individuals with TBI and 62 family members to examine the associations among resilience, self-efficacy, mental health-related quality of life, and family dynamics. The authors found that these protective factors were highly associated with positive family dynamics, suggesting that the improvement of family dynamics after TBI may be a key to increasing protective factors in both individuals with TBI and their family members.

Klyce et al. (this issue) examined the associations between emotional awareness, emotional functioning, and empathy in 90 individuals with TBI and their caregiver’s burden. In regression models controlling for demographics and other variables, the authors found that high levels of hostility and low emotional self-awareness in individuals with TBI were uniquely associated with higher caregiver burden. The authors argued that screening for these predictors of increased caregiver burden and behavioral management treatment for these neurobehavioral issues combined with patient and family education could be helpful to minimize the negative impacts on caregiver burden.

Pugh et al. (this issue) conducted a confirmatory factor analysis of the Affiliate Stigma Scale in a sample of 148 Parkinson’s disease caregivers from Mexico. The authors found extremely poor model fit in both the one-factor and three-factor models and implemented an item trimming approach to arrive at a final five-item Affiliate Stigma Scale Spanish Short Form that had adequate internal reliability, good convergent validity, and an adequately fitting one-factor structure. The authors argued that the new short form of the scale will facilitate future research on measuring caregiver affiliate stigma in Spanish-speaking populations and also in the development of caregiver interventions to reduce affiliate stigma and its harmful effects.

Kuzu, Perrin, and Pugh (this issue) similarly translated the Affiliate Stigma Scale into another language (Turkish) and examined the psychometric properties of the scale in 82 Turkish spinal cord injury/disorder (SCI/D) caregivers. The authors, like Pugh et al. (this issue), found extremely poor model fit in both the one-factor and three-factor models. An exploratory factor analysis helped identify six items to retain in the Turkish short form, which showed adequate or good fit in a follow-up one-factor confirmatory factor analysis. The short form showed good internal consistency and convergent validity with measures of caregiver anxiety and burden. The authors noted the potential of the Turkish Affiliate Stigma Scale Short Form to facilitate research on affiliate stigma in SCI/D caregivers and in Turkey in particular where very little research to date has been conducted on this population or topic.

2.3Caregiver intervention studies

Martindale-Adams, Zuber, Burns, and Nichols (this issue) conducted a two-arm randomized clinical trial comparing interventions to help 163 parent caregivers of adult children veterans with polytrauma, TBI, and/or posttraumatic stress disorder (PTSD). The authors compared the effects of Resources for Enhancing All Caregivers’ Health (REACH) to prerecorded online educational webinars in improving caregiver depression, anxiety, burden, and management of troubling and concerning behaviors. While caregivers in both arms improved in all outcomes, REACH caregivers showed additional improvement in the management of concerning behaviors. The authors argued that while REACH may be particularly helpful for caregivers, prerecorded online educational webinars may also be beneficial for caregivers in resource-limited settings.

Juengst et al. (this issue) conducted a multisite randomized feasibility trial across three sites of Problem-Solving Training (PST) for 94 caregivers of individuals with TBI during inpatient rehabilitation. The authors found that caregivers completing greater than three sessions were less likely to be employed and more often spouses. Though their study was underpowered to examine intervention effects, small-to-medium sized improvements in caregiver depression and burden occurred. The intervention may be particularly useful for caregivers of individuals with TBI who spend more time in inpatient rehabilitation, as those caregivers completed a greater number of sessions.

Rhudy, Hines, Farr, Esterov, and Chesak (this issue) conducted an observational pilot study examining the feasibility and acceptability of the Resilient Living Program in a sample of 16 individuals with stroke or brain tumor undergoing comprehensive acute inpatient rehabilitation and/or their family caregivers. The authors generally found the intervention was feasible and that it yielded statistically significant improvements in fatigue, anxiety, and physical function. This article serves as a platform for larger trials examining resilience interventions in this population, particularly through a caregiver/care recipient dyadic lens.

In the last article of the thematic issue, Perrin et al. (this issue) conducted the first systematic, large-scale randomized clinical trial of a TBI caregiver intervention in Latin America. Their five-session Transition Assistance Program uniquely targeted 89 TBI caregivers during and after the transition from hospital to home after an acute TBI, and the authors collected data both from TBI caregivers and individuals with TBI at baseline, 2 months after hospital discharge, and 4 months after discharge. Intervention group caregivers had lower burden than those in the control at the two follow-ups, and individuals with TBI whose caregivers had been in the intervention group had lower depression. The findings underscore the importance of evidence-based caregiver interventions immediately after neurotrauma when family members are first learning to provide care, especially in medically underserved global regions.

3.1Evidence-based common factors caregiver interventions

I respectfully argue that the field of neurorehabilitation should taper down the development of new caregiver interventions in favor of condensing the caregiver interventions that already exist into their essential elements, or common factors. For example, in dementia alone, literally hundreds of caregiver interventions already exist (Walter & Pinquart, 2020). While there are some NND caregiver interventions that target very specific or sometimes novel caregiver outcomes (e.g., sleep, exercise, family dynamics, spirituality, etc.), the vast majority involve the same—or nearly the same—elements and target similar or very related outcomes (e.g., burden, strain, depression, life satisfaction, NND symptom management, etc.). These approaches often include: (a) PST; (b) stress management; (c) cognitive-behavioral techniques to modify unhelpful thinking patterns; (d) goal setting; (e) social skills or communication training; and (f) connections with secondary caregiving resources. Many also include psychoeducational material tailored to the specific NND, although unfortunately research has suggested that psychoeducation by itself tends not to be very effective in improving caregiver outcomes (Carnevale, Anselmi, Busichio, & Millis, 2002).

Researchers, clinicians, academic departments, clinics, and even funding agencies tend to be extremely disease- or disability-specific in their focus. As a result, resources and efforts to support caregivers tend to operate in disciplinary silos with limited cross-pollination of effective caregiver interventions or approaches by professionals focused on specific NNDs. This unfortunately creates scenarios in which caregiver researchers “recreate the wheel” time and again with new caregiver interventions for their specific NND of interest. This is not in any way to say that all caregiving processes—and as a result needed interventions—are the same. Caregivers who provide support for individuals with sudden-onset NNDs (e.g., TBI, SCI, stroke) tend to go through an extremely quick role transition and therefore have unique experiences in comparison to caregivers supporting individuals with more gradual neurodegenerative diseases (e.g., dementia, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis, etc.). Further, caregivers who provide support for children, younger or middle-aged adults, and older adults similarly have unique experiences, especially depending on their relationship to the individual with the NND.

As a result, it is important that caregiver interventions be appropriately modified for and tested in different NNDs and caregiving populations. For example, the Transition Assistance Program was specifically created to target quick-onset neurological conditions and support new caregivers as they learn to be caregivers for the first time while the individual with the NND transitions from hospital to home. It was originally developed for stroke caregivers (Perrin et al., 2010), modified for SCI (Perrin et al., 2021), and now in this thematic issue modified for TBI (Perrin et al., this issue). Similarly, the REACH intervention was created to support caregivers approximately 6 months after assuming their caregiving role or later and therefore by contrast targets caregiving issues encountered in more of the chronic phases of caregiving. It was originally developed for dementia caregivers (Belle et al., 2006) and has since been adapted for SCI/D (Schulz et al., 2009), multiple sclerosis (J. Martindale-Adams et al., 2020), posttraumatic stress disorder (PTSD; Martindale-Adams et al., 2021), and now in this thematic issue parental caregivers of veterans with polytrauma, TBI, and/or PTSD (Martindale-Adams et al., this issue).

3.2Dissemination and implementation (D&I) science

Instead of such a heavy focus on the development of new, heterogenous caregiver interventions, I would argue that the field of neurorehabilitation move much more strongly in the direction of D&I science approaches to determining how best to imbed into health care systems the common factors components of caregiver interventions that already exist and have been shown to be effective. Unfortunately, the vast majority of NND caregiver interventions die as soon as the grant dollars run out and the study is over, or they tend to have extremely limited health system uptake. I say this humbly given that this is also true of the half dozen or so caregiver intervention studies I have been a part of to date. Only once the field acknowledges this reality can we begin to reengineer the caregiving research paradigm so that our interventions more broadly improve the lives of caregivers. If the field of neurorehabilitation truly wants to help the greatest number of NND caregivers, D&I research is a critical next frontier, not the development of caregiver interventions that are substantively similar to existing caregiver interventions but have a slight rebranding.

Caregiver intervention studies would benefit from adopting at the very least a D&I science Type 1 Hybrid Effectiveness-Implementation approach (Curran et al., 2012). This type of study examines the effects of a caregiver intervention on key caregiver outcomes, while gathering implementation data and input from important stakeholders throughout various study phases. A Type 1 Hybrid design rigorously tests a clinical intervention and secondarily gathers data to inform subsequent implementation research trials. Type 1 s would measure caregiver functioning or symptoms in response to a caregiver intervention, while simultaneously evaluating acceptability and feasibility of implementation through qualitative, process-oriented, and mixed methods (Bernet et al., 2013). A Type 2 Hybrid approach simultaneously tests a caregiver intervention and its implementation strategy and finds a reasonable balance between the two. A Type 3 Hybrid design primarily tests an implementation strategy, typically with indices of fidelity to the caregiver intervention and its adoption. Secondary outcomes tap caregiver-level effects of the intervention, such as symptoms or functioning (Bernet et al., 2013).

The U.S. Department of Veterans Affairs (VA) National Caregiver Center at the Memphis VA Medical Center is a great model for caregiver researchers in D&I. Their flagship caregiver intervention is REACH, one of the most widely used and validated NND caregiver interventions in the world. Their research team has specifically taken D&I approaches to determining how to implement REACH across the full VA Health Care System (Nichols et al., 2016). They also have modified and tested REACH for most NNDs, and they have a formal training infrastructure to certify clinicians in the intervention so that they can use it with their own patients and caregivers. The Caregiver Center trains, certifies, and provides REACH materials to clinicians at VAs across the U.S. and also directly delivers the intervention to any caregiver of a veteran nationwide upon clinician referral. To quantify REACH’s implementation and spread, in 2020, 341 clinical staff at 173 VA sites received REACH training and enrolled 643 caregivers. In 2020, each VA facility had at least one staff member available to deliver REACH through their site. In 2020, 257 additional staff members were trained, and a total of 1,685 caregivers were served through REACH. In 2020, REACH became a performance standard for each Network Director and Caregiver Support Program team at all local facilities. Each facility was mandated to provide REACH to at least four caregivers.

3.3Cultural considerations

Just as with different NNDs, caregiving needs and resulting interventions can vary dramatically across different cultures. Even the construct of caregiving itself can have tremendously different meaning and implications based on one’s gender (Perrin et al., 2015) or cultural background. For example, despite having much fewer health system resources than TBI caregivers in the U.S., those in Mexico report lower levels of depression than their U.S. counterparts (Juengst et al., 2022). The authors interpreted this finding to reflect the idea that Latino communities sometimes view caring for elders as an honor and a role that family members willingly assume. Similarly, Nguyen, Nguyen, Tran, and Hinton (2021) found that dementia caregivers in Vietnam interpreted dementia symptoms as a normal part of the aging process instead of a disease and saw caregiving as a family and moral obligation, despite voicing notable challenges associated with caregiving. Given these potential differences in the construct of caregiving itself, it is critical that even evidence-based caregiver interventions be tailored for and tested in different cultural contexts, whether within the U.S. or internationally. REACH has been modified for and tested in dementia caregivers in Vietnam (Hinton et al., 2020).