Impact of the Brain Injury Family Intervention (BIFI) training on rehabilitation providers: A mixed methods study

Abstract

BACKGROUND: The psychological impact of TBI is vast, leading to adverse effects on survivors and their caregivers. Unhealthy family functioning may be mitigated by therapeutic strategies, particularly interdisciplinary family systems approaches like the well-documented Brain Injury Family Intervention (BIFI). Little is known about the experience of providers who offer such interventions.

OBJECTIVE: This mixed methods study aims to demonstrate that a structured three-day training on the BIFI protocol improves providers’ knowledge and confidence in working with survivors and families, and that this outcome is sustainable.

METHODS: Participants were 34 providers who participated in an intensive training and completed a web-based survey at four points of time. Quantitative data were analyzed via Wilcoxon signed-rank tests and binomial test of proportions. Qualitative data were analyzed according to rigorous coding procedures.

RESULTS: Providers’ knowledge of brain injury and their ability to conceptualize treatment models for survivors and their families increased significantly and mostly remain consistent over time. Qualitative data point to additional gains, such as understanding of family systems.

CONCLUSIONS: Past studies quantify the BIFI as an evidence-based intervention. This study supports the effectiveness of training and serves as first to demonstrate the benefit for providers short- and long-term.

Keywords

Brain injury family systems BIFI mixed methods

1 Introduction

Today’s rehabilitation providers will work with multiple clients and families who have survived brain injuries and endure significant longitudinal consequences. A traumatic brain injury (TBI), caused by a “bump, blow, or jolt” (CDC, 2014, p. 15) to the head, disrupts the normal function of the brain leading to short- and long-term sequelae – cognitive, behavioral, affective, and somatic. In spite of limitations to data collection and reporting, the Centers for Disease Control and Prevention (CDC) estimate TBI incidences to be approximately 2.5 million (CDC, 2014), making it a leading cause of death and disability in the United States.

Given the nuanced neurochemistry and mechanisms of the brain, no two injuries are alike, and the locus of injury may not always predict a survivor’s success in the recovery process. For instance, a high-school athlete who sustained what seemed to have been a mild concussion may withstand persistent learning and memory challenges, struggling to fulfill school obligations. A middle-aged woman who appeared to have recovered quickly from a car accident may be plagued with long-term sleep disturbances, depression, and light sensitivity. A returning war veteran who survived a blast-related injury may vacillate in his symptoms, appearing rational and well adjusted for weeks, only to later experience sustained periods of irrational behavior punctuated by impulsivity, anxiety, and rage.

The psychological impact of TBI is vast, leading to an array of adverse effects on the survivor and his loved ones. While “the return to work, school, and other pre-injury activities after TBI are key elements for life satisfaction” (CDC, 2014, p. 18), it is often the case that these goals are untenable given the pronounced long-term outcomes of brain injury. This promulgates caregiver stress; numerous studies have demonstrated that families caring for a loved one with TBI face increased psychological distress and unhealthy family functioning (Anderson, Parmenter, & Mok, 2002; Kreutzer, Gervasio, & Camplair, 1994; Livingston, Brooks, & Bond, 1985; Norup, Welling, Qvist, Siert, & Mortensen, 2012; Perlesz, Kinsella, & Crowe, 2000; Schönberger, Ponsford, Olver, & Ponsford, 2010).

While research documents the need for thorough education on brain injury (Meixner, O’Donoghue, & Witt, 2013), no studies have investigated the difficulties that rehabilitation providers face when working with survivors of brain injury and their families. Comprehensive interdisciplinary family systems approaches do work for survivors and families, so engagement in specialized training may improve providers’ knowledge of brain injury and their efficacy in working with survivors and their loved ones both short-term and longitudinally. Through a mixed methods design, this research investigates this phenomenon, paving paths for novel, person-centered intersections between the fields serving persons with brain injury.

2 Literature review

A preview of the empirical literature on family rehabilitation and intervention, with attention to the barriers affecting access to rehabilitative services for survivors of brain injury and their families, provides the backdrop for this investigation.

2.1 The need for family rehabilitation and intervention

In the current literature, studies have explored the effectiveness of various therapeutic interventions for persons with TBI. Generally, the long-term goals of these interventions are to improve survivors’ mental and cognitive functioning and to help them regain functional independence. In a review of randomized control studies of various interventions, comprehensive interdisciplinary approaches were found to be most effective in the recovery of cognitive functioning (e.g., attention, memory, executive functioning, communication) and functional independence for post-acute patients (Lu, Gary, Neimeier, Ward, & Lapane, 2012). Integrally, comprehensive interdisciplinary approaches were associated with lower rates of depression (Bombardier et al., 2009), increases in cognitive and memory functioning (Vanderploeg et al., 2008), and increases in functional independence (Powell, Heslin, & Greenwood, 2002).

In spite of the effectiveness of comprehensive interdisciplinary approaches, none of the previous studies involved family caregivers of a survivor of TBI. Family members care for nine of 10 persons with TBI (Kreutzer et al., 2009), playing a pivotal and essential role in the rehabilitation process. Yet family caregivers of persons with brain injury are under pronounced stress; Kreutzer et al. (1994) found that 47% of caregivers reported significant distress on the Brief Symptom Inventory (DeRogatis, 1993). Further, those family members caring for loved ones with grave communicative or social impairments experience more severe physiological distress than those who care for individuals with more mild deficits (Anderson et al., 2002). In a study of 45 families of individuals with TBI, caregivers reported significantly higher depression and anxiety symptoms compared to a normed sample (Norup et. al, 2012). Norup et al. also discovered significantly lower quality of life scores (i.e., emotional impact, vitality, social function, and mental health) in families coping with TBI.

Without support, these challenges persist. In a longitudinal study of families affected by TBI, depression and anxiety remained present in caregivers at two, five, and seven years post event (Brooks, Campsie, Symington, Beattie, & McKinlay, 1986; Brooks, McKinlay, Symington, Beattie, & Campsie, 1987; Schönberger et al., 2010). Additionally, families of persons with TBI often reported unhealthy family functioning. Applying the Family Assessment Device (FAD) (Epstein, Baldwin, & Bishop, 1983) as the measure, a longitudinal study demonstrated increased levels of dysfunction in problem-solving, communication, affective involvement, and general functioning in family caregivers (Schönberger et al., 2010). Caregivers of persons with TBI scored significantly lower on the general functioning subscale of the FAD compared to a non-medical sample (Kreutzer et al., 1994). Similarly, social and marital functioning in couples coping with TBI has been shown to decline in the year following the injury (Livingston et al., 1985).

Because caregivers experience significant distress following the brain injury of a family member, an intervention that attends to both the survivor and his family might be more beneficial than individual therapy alone.

2.2 The Brain Injury Family Intervention (BIFI)

The Brain Injury Family Intervention (BIFI) is a comprehensive, evidence-based intervention designed to improve the lives of persons with TBI and their families. With underpinnings in cognitive behavioral therapy (CBT) and family systems theory, the BIFI is implemented by counselors, psychologists, social workers, nurses, and rehabilitation therapists. The BIFI consists of five 90– 120 minute sessions in which survivors and their families systematically engage with 12 topical areas (refer to Table 1) around which there are provided scripts, goals, intervention activities, and homework (Kreutzer, Kolakowky-Hayner, Demm, & Meade, 2002; Kreutzer et al., 2009).

Table 1
Impact of BIFI training on confidence and knowledge over time

Confidence Domain: T2-T1 T3-T2

Ability to conceptualize treatment models for survivors and their families T2>T1 T3 = T2

Knowledge Domains: T2-T1 T3-T2

Foundational knowledge of brain injury T2 = T1 T3 = T2

Understanding of how brain injury affects the family system T2>T1 T3 = T2

Understanding of how brain injury impacts survivors’ ability to maintain employment T2>T1 T3 = T2

Knowledge of areas most damaged by DAI T2>T1 T3 = T2

Knowledge of commonly reported neurobehavioral problems T2>T1 T3 = T2

Knowledge of commonly reported emotional reactions T2>T1 T3<T2

Knowledge of theoretical models appropriate for working with families T2>T1 T3 = T2

Knowledge of the grading system for concussions T2 = T1 T3 = T2

The goal of the BIFI is to educate families on the physical and cognitive changes associated with TBI and how to cope effectively with these changes both for the family and the client. Families who engaged with the BIFI reported statistically significant gains in the areas of health information, professional support, emotional support, and care involvement (Kreutzer et al., 2009).

The BIFI is founded upon well-researched therapeutic techniques, including family systems theory, cognitive behavioral therapy (CBT), and collaborative self-examination (Kreutzer et al., 2009). Family systems theory suggests that healthy family functioning is achieved when each member of a family system functions independently and also interacts positively within the group (Gan, Campbell, Gemeinhardt, & McFadden, 2006). In an assessment of family system functioning following a member’s brain injury, very few of the families studied engaged in normal or healthy family functioning (Gan et al., 2006). An in-depth analysis of unhealthy family functioning revealed particular problems in the areas of problem solving and coping with new roles for family members (Gan et al., 2006). The BIFI endeavors to improve family functioning by addressing empathy, respect, and validation within the family system (Kreutzer et al., 2009).

Additionally, the BIFI applies CBT as a catalyst for change. CBT assumes that cognition affects behavior, and behavioral changes can be achieved by changing cognition (Konnert, Dobson, & Stelmac, 2009). In a meta-analysis of 16 controlled studies, CBT was found to be effective in reducing depression and anxiety symptoms long-term in populations suffering from posttraumatic stress disorder, panic disorder, and adult unipolar depression (Bulter, Chapman, Forman, & Beck, 2006). Depression and anxiety symptoms have been observed in both survivors of TBI and their families (Fleminger, Oliver, Williams, & Evans, 2010; Kreutzer et al., 1994; Norup et al., 2012). Waldron, Casserly, and O’Sullivan (2012) found a significant improvement in using CBT to treat anxiety and depression for persons who have an acquired brain injury. It is suggested that guided self-talk helps clients with TBI manage frustration and increase self-regulation of their moods and emotions (Mateer, Sira, & O’Connell, 2005). In the BIFI approach, CBT is used to implement emotional reframing to better cope with negative emotions and skill-training techniques to improve problem solving and communication (Kreutzer et al., 2009).

Implemented in conjunction with family systems theory and CBT, the collaborative self-examination technique developed by Kreutzer and Taylor (2004) allows family members to express their feelings and opinions about life events, and it encourages family members to take the perspective of other family members to promote understanding and communication within the family system (Kreutzer et al., 2009). The technique was developed to help families cope with the rapid changes the family system endures following a TBI (Kreutzer et al., 2009).

To date, the BIFI has been associated with positive outcomes for families and persons with TBI. Using the Family Needs Questionnaire, developed to quantify the perceived needs of families before and after the BIFI (Serio, Kreutzer, & Witol, 1997), significant gains were found in the areas of health information, emotional support, professional support, and involvement in care (Kreuzter et al., 2009). These findings suggest that the BIFI met the needs of family members and reduced perceived barriers to service (Kreutzer et al., 2009). In a mixed methods investigation, researchers used the Learning Survey to assess the attainability of each goal set forth in the BIFI sessions (Kreutzer, Stejskal, Godwin, Powell, & Arango-Lasprilla, 2010). Results revealed that both families and persons with TBI found the intervention sessions to be helpful and important (Kreutzer et al., 2010). The results also suggest that the goals set forth during the intervention were met (Kreutzer et al., 2010).

2.3 Barriers to accessing services

Many survivors of TBI and their families do not receive the therapies and services they require, despite available interventions like the BIFI. This situation is even more complex when persons with TBI experience comorbid mental health concerns. To better understand this phenomenon, Meixner et al. (2013) conducted an explanatory mixed methods study of service providers. In phase one of the study, a survey questionnaire was distributed to 226 providers with 110 respondents (49% response rate). Phase two involved focus group interviews, designed to investigate further the findings from the first part of the study.

The findings pointed to various, interrelated barriers to services, among them the self, the family, stigma, professional issues, training/education, system resources, and funding (Meixner et al., 2013). Relevant to this research study are two barriers – the family, which is often stressed to “provide care and gate keeping for a loved one who is in crisis” (p. 382) and a dearth of training and education on brain injury for rehabilitation providers. According to the survey results, 58% of the respondents had never attended a specialized training session on working with individuals with TBI and 52% of the providers surveyed reported that they did not feel confident in their abilities to work someone with a TBI (Meixner et al., 2013).

While a multitude of research studies focus on survivors of TBI and their families, no research to date highlights the difficulties that providers may face when working with this population. Absent appropriate education and training, however, few providers are confident in their work with survivors of brain injury (Meixner et al., 2013). As studies do demonstrate the efficacy of a comprehensive, interdisciplinary family systems approach like the BIFI, it stands to reason that training in this intervention could increase confidence and, in turn, fulfill an integral need for survivors and their loved ones. The current study aims to demonstrate that providing a structured three-day training on the BIFI protocol will improve providers’ knowledge and confidence in working with persons with TBI and their families, and that this outcome is sustainable.

3 Methodology

The primary aim of this mixed methods study was to investigate the short and long-term impact of the BIFI training on providers’ knowledge and confidence outcomes. Research questions were as follows: (1) is there a difference in foundational knowledge of brain injury (e.g., functional neuroanatomical issues, neurobehavioral problems, impact on the survivor and family system)? (2) Is there a difference in confidence to conceptualize treatment models for survivors and their families? (3) Does the BIFI training maintain its effectiveness over time? The study was approved for human subjects by the Institutional Review Board of the university within which the researchers serve as faculty.

3.1 Participants

Participants included a convenience sample of 34 providers of therapeutic services (i.e., licensed professional counselors, neuro/psychologists, social workers, case workers) across a region defined as rural by the Office of Rural Health Policy (HRSA, 2013). A prior study on this population (Meixner et al., 2013) validated the need for provider training and education given two factors: an absence of integrated services for persons with brain injury and the small number of professionals who work routinely with survivors and their families. Thus, the intensive, expert-led training educated a self-selecting group of providers on brain injury, also teaching them to administer the BIFI protocol to survivors of brain injury and their families. Inclusion criteria for admission into the training were as follows: individuals must be employed at the time of training in a mental health or health care position wherein therapeutic services are provided to families or survivors of brain injury.

3.2 Measures

A web-based evaluation instrument was developed by a team of content and measurement experts to measure and explore participants’ knowledge and confidence related to the BIFI training objectives. Each of the items, made explicit in the results section, mapped to facets of the training curriculum and were amenable to a dependent samples design. In addition, open-ended responses were elicited to (1) provide qualitative, explanatory support to the quantitative measures and (2) explore participants’ perceptions of how what they learned would be applied to their professional settings.

Participants were asked to complete the online instrument at four time points: pre-training (T1), one day post-training (T2), 90 days after the training program (T3), and two years post-training (T4). Thirty-four (34) participants completed T1 and T2, 18 participants completed T3, and nine participants completed T4. Given the longitudinal nature of the study and the need to match participants over time, attrition by T4 was anticipated. While 11 matched cases were presented across T1, T2, and T3, only three matched cases were presented across all four points of data collection. Thus, data from T4 are insufficient to merit discussion in this paper.

3.3 Data analysis

The quantitative data were analyzed using SPSS. Wilcoxon signed-rank tests, a nonparametric alternative to the dependent samples T tests, were used to determine whether there is a significant difference in the total ranks of two related groups across items corresponding to participants’ understanding and confidence. The researchers also conducted a binomial test of the proportion of respondents who increased in their knowledge of brain injury (e.g., etiology, impact, etc.) across time. All quantitative data are summarized in Table 1.

The qualitative data were transcribed and initially coded by hand, then imported into NVIVO 10 for coding, aggregation, and analysis. Data were themed by two members of the research team according to a consensus procedure, which limits bias and assures credibility of findings.

4 Results

Wilcoxon signed-rank tests compared two dependent conditions. As an immediate result of BIFI training, participants’ understanding of how brain injury affects the family system was significantly higher after the intervention than prior to the training (z = – 2.75, p < 0.01, r = – 0.59). Participants’ understanding of how brain injury impacts survivors’ ability to maintain stable employment was also significantly higher at T2 (z = – 2.25, p < 0.05, r = – 0.48). Critically, participants were significantly more confident in their abilities to conceptualize treatment models for families (z = – 2.89, p < 0.005, r = – 0.61). In comparing T2-T3, participants’ understanding of how brain injury impacts family systems and survivors’ ability to maintain stable employment did not change significantly in the period of 90 days following the training. Further, participants remained confident in their ability to conceptualize treatment models for families.

As an immediate result of BIFI training (T1-T2), participants’ knowledge also increased significantly as measured by binomial tests of proportions: the areas of the brain most damaged by diffuse axonal injury (p = 0.012), commonly reported neurobehavioral problems (p = 0.012), commonly reported emotional reactions (p = 0.012), and theoretical models appropriate for working with families after brain injury (p = 0.001). The following items did not significantly change as an immediate result of the BIFI training: foundational knowledge of brain injury (p = 0.227) and knowledge of the grading system for concussions (p = 0.065). When binomial tests of proportions were conducted between T2-T3, findings reveal that participants’ knowledge of brain injury remains consistent, only decreasing significantly in one area: participants’ knowledge of the commonly reported emotional reactions of families living with a survivor of brain injury (p = 0.012).

At T2 and T3, participants were asked to respond to two open-ended items. The first elicited insight on the three most important components of knowledge participants gained from BIFI training. The second queried respondents for the ways they intend to or have applied their learning to practice. At T2, the following categories emerged as integral: understanding and application of family systems (e.g., “learning ways to live with TBI patients and how family dynamics change around situation”), information on TBI diagnosis (e.g., “familiarity with Glasgow Coma Scale, grades for concussions”), and general treatment/intervention strategies (e.g., “integration of family systems and CBT”). These areas were mirrored in the T3 qualitative findings.

At T2, participants provided a broad list of applications for the training: raising awareness (in self, others, and clinical settings), providing resources to families (psychoeducation), integrating CBT and family systems therapy, involving family members in treatment, and applying their learning to other populations. For those individuals at T3 who had worked with persons with brain injury since the training, the following themes were noted: increased ability to work effectively with clients with TBI and developed ability to normalize challenges faced by individuals and their families. Those individuals who had not worked in this milieu since T2 reported that they had shared information with colleagues or supervisors and still planned to apply their knowledge in the future.

5 Limitations

Limitations subsist in non-experimental studies; although a rigorous time series design was employed, there was not a control group against which to compare outcome data with those who engaged in the training. Further, individuals who attended the three-day training may constitute a self-selecting group of providers more motivated to work with survivors and their families than others. A fidelity study was not conducted on the training protocol itself, so it is plausible that lack of change in certain domains is attributable to pedagogy or content – not to the participants’ actual development. Finally, a potential project limitation includes whether these findings generalize beyond a rural, geographically disperse locus. Replication with a larger and more diverse sample size is encouraged.

6 Discussion

Medical advances, particularly in the area of neurotrauma, have led to decreased mortality rates for survivors of brain injury. During the acute phase, individuals with brain injury often endure coma, craniotomy, and polytrauma before transitioning into inpatient or outpatient rehabilitation hospitals. Beyond the post-acute phase, however, the medical and therapeutic trajectory is often unknown or highly varied across patients. Long-term, survivors and their families need access to cost-effective, integrative services that address ongoing symptoms and sequelae – somatic, psychological, psychiatric, and physical. Individual and family interventions with attention to the idiosyncrasies of neurotrama – such as that provided through the BIFI – are integral and central.

Past studies quantify BIFI as an impactful, evidence-based intervention for survivors and their families. The findings of this study support the effectiveness of the BIFI training program for rehabilitation providers who work with individuals with brain injuries and their families. This study serves as a first to demonstrate the benefit both for and from service providers’ perspectives. Regardless of whether rehabilitation providers implement the BIFI protocol, the longitudinal positive outcomes of training and reported participant confidence point to the importance of training and education. Providers are more confident in their ability to conceptualize treatment models for survivors of brain injury and their families. They also understand and retain the nuances of brain injury – how it affects the brain and its impact on families and survivors (e.g., employment, neurobehavior, emotions). It is curious that knowledge of the frequently reported emotional reactions of families living with a survivor of brain injury decreased when comparing T3 to T2 as heightened sensitivity to the emotional aspects surrounding TBI for affected families would be more the expectation. This finding may merit further investigation. While the quantitative findings point to no change in participants’ base knowledge of brain injury and the grading system, the qualitative results signify great gains related to understanding the TBI diagnosis.

An analysis of open-ended questions reveal applications that benefit rehabilitation and neurorehabilitation providers, especially those who plan to integrate brain injury into curricula, courses, and trainings. Pedagogically robust and well-aligned trainings not only raise awareness of the self and others in relation to brain injury, but they can also: provoke ideas on resource integration, model methods of theoretical parsimony (e.g., CBI and family systems), and contextualize ways to see survivors and their families as partners in a systemic process of recovery.

Conflict of interest

There are no declarations of interest. That is, no people or organizations have a financial interest (direct or indirect) in this subject or study.

Footnotes

Acknowledgments

The authors acknowledge the contributions of Dr. Jeffrey S. Kreutzer and Dr. Emilie Godwin, co-developers of Brain Injury Family Intervention Therapy, Virginia Commonwealth University, Richmond, VA, USA. The authors acknowledge the work of Julia Teague, Department of Communication Sciences and Disorders, James Madison University, Harrisonburg, VA, USA.

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Confidence Domain:	T2-T1	T3-T2
Ability to conceptualize treatment models for survivors and their families	T2>T1	T3 = T2
Knowledge Domains:	T2-T1	T3-T2
Foundational knowledge of brain injury	T2 = T1	T3 = T2
Understanding of how brain injury affects the family system	T2>T1	T3 = T2
Understanding of how brain injury impacts survivors’ ability to maintain employment	T2>T1	T3 = T2
Knowledge of areas most damaged by DAI	T2>T1	T3 = T2
Knowledge of commonly reported neurobehavioral problems	T2>T1	T3 = T2
Knowledge of commonly reported emotional reactions	T2>T1	T3<T2
Knowledge of theoretical models appropriate for working with families	T2>T1	T3 = T2
Knowledge of the grading system for concussions	T2 = T1	T3 = T2