Family and home in cognitive rehabilitation after brain injury: The importance of family oriented interventions

1 Introduction

Acquired brain injury (ABI) – of vascular origin or in the form of traumatic brain injury (TBI) – almost always leaves the patient suffering more or less severe impairments within sensory, cognitive, motor and/or emotional domains. Such symptoms affect not only the patient as an individual but also the family and friends of the patient (see below). The vast majority of such patients are eventually discharged to the home (e.g. Kreutzer et al., 2009a) – and consequently have to be integrated in the family and home environment in spite of potentially remaining ABI related symptoms. Furthermore, there may be reasons to advocate that rehabilitative training is as far as possible conducted in the home of the patient. Improved insights into the neurocognitive mechanisms mediating cognitive recovery after ABI (e.g. Mogensen, 2014, 2015) indicate that home-based training may both (A) allow training results to better generalize to the daily living of the patient and (B) promote improved outcome of training via an easier recruitment and integration of pretraumatically acquired neurocognitive networks (e.g. Mogensen, 2014). We have elsewhere (Mogensen & Wulf-Andersen, 2017) argued that such benefits of home-based training make the home and family of an ABI patient an important “social reserve”. And that significant progress can be made by clinically utilizing such “reserves”.

2 Challenges of the home environment

But it has to be remembered that the advantages of an increased implementation of home-based rehabilitative training may come with the potential of serious “side-effects”. The social environment of hospitals and other rehabilitation-associated institutions consists of a combination of other patients and staff with an educational background preparing staff-members for the often challenging interactions with patients suffering cognitive and potentially emotional impairments due to brain injury. In contrast, the social environment at the home of the patient consists of family members such as parents, spouse or children. Contrary to the institutional staff, these family members are typically unprepared and without an educational background relevant to understanding the cognitive and emotional problems related to brain injury. Additionally, these individuals (in contrast to professional staff-members), do not start from an emotionally neutral baseline in their relationship to the patient. They are used to the premorbid situation – for instance a close and positive emotional contact and relative ease of communication. And they are unprepared for the injury-associated changes – often occurring within both the emotional tone and the communicative interactions. Family members play an important role in the rehabilitation process giving support and helping the survivor adjusting to life after ABI. This can be a very difficult process for the family – challenging existing roles and routines of the family. Furthermore, rehabilitation outcomes are closely associated to family outcome, making it even more important to see ABI as something that influences the family system and not just the ABI survivor (Elbaum, 2007; Gan, Campbell, Gemeinhardt & McFadden, 2006; Lefebvre, Cloutier & Levert, 2008; Taylor et al., 2001). Family members are often ill-prepared to handle the demanding and stressful life changes following brain injury and the literature indicate that caregivers are at higher risk for depression, anxiety, ill health and increased use of medication (Elbaum, 2007; Gan et al., 2006; Hall et al., 1994; Kreutzer et al., 2009a; Rivera, Elliott, Berry, Grant & Oswald, 2007). The subjective burden of distress also increases the risk of divorce, substance abuse and social isolation, making the family more vulnerable (Semrud-Clikeman, 2001). The risk of family dysfunction with negative influence on rehabilitation outcomes is also found to be increased (Gan et al., 2006). If such issues are not specifically addressed, shifting the rehabilitative training to the home environment may be associated with “side-effects” affecting the family in a negative manner – and consequently also negatively influencing the rehabilitative process of the patient.

There is an urgent need more specifically to address the challenges to which the families of ABI patients are exposed. Such a need is practically always present, but will most likely reach an even higher level of importance with the advent of better methods within home-based cognitive rehabilitation. The present paper will address studies specifically focusing on such challenges as well as some of the available formalized programs of family interventions.

3 Studies specifically addressing the need for family-based interventions

Kosciulek (1996) used the Circumplex Model of Marital and Family Systems developed by Olson (1989) as a framework to investigate head injury family types. Since the family is often responsible for the lifelong wellbeing of persons with head injury, ABI affects the entire family system (Elbaum, 2007; Gan et al., 2006; Lefebvre et al., 2008; Taylor et al., 2001). The Circumplex Model of Marital and Family Systems attempts to bridge the gap between theory, research and practice (Kosciulek, 1996). Family behaviour is defined through cohesion and adaptability. Cohesion is understood as “the emotional bonding that family members have toward one another” and there are four levels from disengaged to enmeshed. Adaptability is understood as “the ability of a marital or family system to change its power structure, role relationships, and relationship rules in response to situational and developmental stress” and there are four levels from rigid to chaotic. Clinical and high-risk families are often classified as extreme types, while non-clinical and low-risk families are often classified as balanced types. Head injury families are most often classified as extreme, but according to Kosciulek, balanced head injury families seem to be more functional with more effective communication (compared to extreme types of head injury families). Such a pattern is in agreement with the theory and supports the construct validity of the Circumplex Model of Marital and Family Systems as an aid to understand the changes in a family system after a head injury. A study with 20 families showed that shortly after a head injury, 70% of the families were extreme types and a substantial portion of moderate balanced families (40%) showed less cohesion and/or adaptability following head injury (Curtiss, Klemz & Vanderploeg, 2000). Such changes may represent a completely normal development in an extreme situation when a spouse needs to assume a singular head-of-household role for decision making, housekeeping and so forth. Yet in families where the caregivers used an active coping approach to ask for information, get help from their network or find professional assistance they were better at adapting to their new situation (Curtiss et al., 2000).

Several studies have shown that community-based rehabilitation has an advantage for caregivers since they receive more counseling, have better access to specialty care and have fewer unmet family needs (Braga, Da Paz & Ylvisaker, 2005; Kulthau et al., 2011; Smith et al., 2006). Ergh, Rapport, Coleman and Hanks (2002) showed the same tendency as the one reported above since more than 60% of the studied families reported clinically significant family dysfunction following head injury. Caregivers to individuals with head injury and neurobehavioural personality changes, affective dysregulation and executive dysfunction were most distressed. Caregivers perceiving a greater degree of social support felt less distressed – most likely due to the support having a moderating influence on several aspects e.g. executive dysfunction and increased the wellbeing of the caregiver.

The most severe cases of head injury often result in isolation and increased family dysfunction over time (Lefebvre et al., 2008; Wade et al., 2002). This is especially true with trauma-associated behavioural dysfunctions where the caregivers can experience embarrassment and feel stressed out when they need to be two steps ahead to avoid awkward social situations caused by insults, mistakes, bad behaviour or a loss of temper. Another interesting aspect is that the other family members do not seem to be affected equally by the head injury. In case of patients with ABI, mothers, spouses and siblings seem to experience most distress by the situation measured by the questionnaire FAM-III while fathers and offspring are less affected. Eighty-two percent of spouses and siblings reported being in the distressed range (Gan et al., 2006). A possible explanation could be that mothers and spouses often take on the primary caregiver role leaving little space for other areas of life.

It has been found that many families affected by head injury experience depression among the caregivers. Rivera et al. (2007) found that 48% of caregivers were clinically at risk for depression. Age of the caregiver, level of burden and a positive problem solving approach did not seem to influence the risk for depression. Only absence of the negative problem solving approach lowered the risk of depression. A negative problem solving orientation (NPSO) is characterized by a dysfunctional and inhibitive emotional and cognitive mindset making it more difficult to solve problems effectively. Furthermore, the risk of depression increases if the person has an attributional style characterized by pessimism – where negative events are attributed to stable and global causes, while positive events are explained by unstable and specific explanations (Rivera et al., 2007). This seems to be true for caregivers and others alike. Spence, Sheffield and Donovan (2002) studied 733 adolescents between 12 and 14 years of age from a community sample and showed, that negative life events in combination with a negative problem orientation predicted depression at the 1-year follow-up while negative life events in itself did not.

A possible explanation for the positive influence of community-based interventions is that the self-perception of control is associated with a change in disability over time even 12–14 years after head injury (McMillan, Graham & Stewart, 2012). When the rehabilitation is integrated in the family environment and the caregivers are involved as active participants in the process, it would be natural to gain a greater sense of control over the final result. Individuals without this self-perception of control can experience greater disability even 7 and 14 years after a head injury (McMillan et al., 2012).

The focus of the remaining parts of the present communication is some of these problems and how potentially to address them. We will point to some of the existing and potential programs which may assist the relatives within the home environment in coping better with the described challenges and also, by the same token, being better able to assist the rehabilitative process of the patient.

Boschen, Gargaro, Gan, Gerber and Brandys (2007) reviewed studies on family caregiver interventions for ABI and other chronic disabilities. One hundred and sixty-two articles were read but only 31 were categorized as randomized controlled trials of level II and evaluated in detail. The assessment showed a general lack of methodological rigor regarding quality of design and evidence of effectiveness. On that background it may not be surprising that it was not possible to find support for any specific intervention for family caregivers of ABI or other chronic disabilities. The review found support for well-coordinated multi-component interventions integrated across the community-based service delivery system. Boschen et al. (2007) also stress the need for looking at the family as a system where each part needs the right amount of support, guidance and information to cope with the difficult situation. Yet, making interventions according to these guidelines demand a lot of case management, since individual therapy has to be combined with support groups and professional knowledge to gain the optimal result.

Dillahunt-Aspillaga et al. (2013) attempted to estimate unmet needs among caregivers throughout the different stages of living as a caregiver for a TBI patient. The study included 53 caregivers with an average age of 58 years. The individuals with TBI were between 4 and 81 years of age (the average age was 31 years). In agreement with Boschen et al. (2007), Dillahunt-Aspillaga et al. (2013) found that caregivers need multi-component interventions, e.g. a patient/caregiver advocate, a wider social network for support, behavioural therapy for the survivor and trustworthy respite care. It might seem obvious that behavioural therapy for the TBI patient is only necessary when the patient has actual behavioural problems, but when this is the case, it is very troublesome for the caregivers. Only 34% of the caregivers participated in support groups, even though it can be a way to gain social support and widen the social network. The primary reasons for not participating in support groups were that caregivers were unaware of such groups in their area, were sceptical about the benefit they could gain by participating and placed the needs of the TBI patient above their own (Dillahunt-Aspillaga et al., 2013).

Most interventions focus either on the ABI patient or on the caregiver trying to improve knowledge of brain injury, offer social support and learn new skills. Sometimes this can work out positively for both the patient and caregiver. But there is a risk that such an approach can create an even larger gap in the family. Stejskal (2012) writes “TBI is a phenomenon that affects the survivor as well as the family as a whole. Yet, with the individually-based focus of the medical model of treatment, and despite the family’s pivotal role in rehabilitation, the survivor is often the only person who receives rehabilitative counselling, if at all”. Gan et al. (2006) suggest to treat the whole family as a system and mention the Brain Injury Family Intervention (BIFI) as one of the few available programs.

4 Family intervention programs

BIFI was developed by Jeffrey Kreutzer on the background that shorter hospital stays cause caregivers to carry a larger burden assisting the individual with TBI practically, physically and emotionally (e.g. Kreutzer, Kolakowsky-Hayner, Demm & Meade, 2002). This is a significant burden, since 9 out of 10 TBI patients were discharged to the home (Kreutzer et al., 2009a). BIFI is a manual-based and structured intervention making sure the program is delivered systematically and efficiently by the clinician. The program can be delivered as family therapy, marital therapy, individual therapy, group therapy and bibliotherapy depending on the need of the family (Kreutzer et al., 2002). BIFI consists of five sessions lasting 90–120 minutes and during each session 2-3 topics are addressed. Earlier sessions focus on the needs and concerns most frequently identified during interviews conducted with family members and within the literature – e.g. effects of brain injury on the patient and the family as well as understanding of the recovery process. Later sessions reinforce and build upon the foundation of knowledge and skills learned in earlier sessions – e.g. solving problems and setting goals, managing stress and intense emotions as well as strategies for optimal recovery (Kreutzer et al., 2009b).

A test of BIFI (Kreutzer et al., 2009b) was conducted with 79 families of patients with mild, moderate or severe TBI. Only 53 families completed all sessions and assessments – partly due to separation, moving out of state, severe illness and transportation difficulties. Data were collected pre-treatment, post-treatment and at a three months follow-up. The results demonstrated significantly increased knowledge of TBI (Health information), emotional support, professional support and care involvement when measured at the three months follow-up. There was a continued improvement after the end of treatment – but no significant changes in instrumental support and community support measured by the Family Needs Questionnaire (FNQ). Furthermore the families reported a significant decrease in obstacles to receive services regarding TBI measured by the Service Obstacles Scale (SOS) indicating less unmet needs. Finally there were no significant changes in family functioning measured by the Family Assessment Device (FAD), no changes in family members’ distress and life satisfaction measured by the Brief Symptom Inventory-18 (BSI-18) or the Satisfaction With Life Scale (SWLS). Family members of patients with longer lengths of hospitalization or unmarried caregivers reported more unmet needs both before and after treatment. Finally, all of the participating family members would recommend the program to others. There were several weaknesses in the study caused by the absence of a control group and uncertainties about optimal treatment intensity, duration and frequency (Kreutzer et al., 2009b).

Kelly, Ponsford and Couchman (2013) studied an intervention method based on The McFarlane Multifamily Group intervention (MFG). The study addressed 41 individuals with TBI (the patients were 18 to 73 years of age) and their caregivers. The average time since the head injury was five years and most of the patients had suffered severe TBI. The study included a control group matched for gender and age. Effects were measured pre- and post-treatment. The intervention consisted of 12 sessions over 10 weeks (each session lasting 90–120 minutes). Two sessions covered information about brain injury and common sequelae for the survivor and the family, two sessions asked the participants to describe themselves with and without reference to the brain injury and eight sessions focused on problem solving with different methods. After the treatment period, the participants with TBI showed no changes in self-concept, self-esteem, family function, depression and anxiety. Yet, the study demonstrated that TBI affects self-concept and family functioning negatively compared to the control group. There can be several reasons why the intervention failed to affect the standardized measures used in this study. One such reason could be that the individuals had lived for so long with TBI that 12 sessions over 10 weeks were not sufficient to change their self-concepts. Another explanation could be that the often severe brain injury could make it difficult to recall session content and carrying over the potential benefits of the intervention to the everyday lives of the subjects.

A pilot project with six families – each family including an individual with ABI – was reported by Charles, Butera-Prinzi and Perlesz (2007). The TBI patients were between 26 and 49 years of age and the head injury had occurred 2–29 years prior to the study. The intervention consisted of multifamily sessions based on themes from the Bouverie Family Tasks Model for ABI. The intervention consisted of 12 sessions over 6 months and covered such themes as grieving multiple and complex losses, restructuring family roles and responsibilities, developing new identities and creating new meaning. Three of the participating families had had a relationship prior to the ABI, while the other three had created a relationship after the injury. The intervention was evaluated using both qualitative and quantitative measures pre-treatment, post-treatment and at a three months follow-up – addressing individual, couple and family functioning. Families were in general positive about their participation in the group with benefits including reduced feelings of shame and isolation, provision of mutual support, increased understanding of brain injury, sharing of difficult experiences and movement from blame to compassion. Yet, the families differed widely in their primary concerns. Such concerns mainly depended on whether the family had initiated a relationship with knowledge of the TBI and found their roles accordingly or if the family cohesion had suddenly become threatened by TBI. The sample was too small to analyse quantitative changes, but five out of six families reported violence as a problem following a TBI.

A theoretical paper by Sachs (1997) describes the effects of an elderly adult’s neurological impairment on family structure and functioning. Sachs presents a short-term model for psychotherapy with families addressing cognitive, affective and behavioural aspects of family functioning. He also presents three different categories where the first only offer treatment for specific problems or allow family members to ventilate and receive validation for their feelings over 1-2 sessions. The next category deals with specific problems but also includes more general work with complex family dynamics in the present-day caregiving situation. This is done over 3–8 sessions. Finally, the last category allows discussion of the above mentioned themes, but also discussions of past conflicts among family members – and how such conflicts can interfere with the ability to handle the elderly patient. The treatment usually lasts more than 8 sessions to provide sufficient time to resolve conflicts.

The mentioned studies of family-oriented interventions are in spite of similarities rather different. Kelly et al. (2013) measured effects of the multifamily group intervention on the participant with TBI without finding significant changes of the individual’s self-esteem and self-concept. Kreutzer et al. (2009b) found remarkable changes – working with the whole family as a system, through fewer sessions and in shorter time (compared to the study by Kelly et al. (2013)). Charles et al. (2007) pinpointed the need for looking into individual differences – stressing that primary concerns can vary significantly between participants and some themes might be too vulnerable to discuss in a group setting (e.g. violent outbursts).

The variations between individual patients and the individual families may be some of the most important challenges to family-based ABI rehabilitation. Individual differences, differences in family needs and special circumstances need to be considered when trying to offer the optimal help for families in this very difficult situation. Sachs (1997) supports this view and has tried to differentiate between families needing treatment of different durations – depending on the severity of problems and past conflicts in the family. ABI can easily create a gap between the patient and the caregivers by changing existing roles, routines and priorities in life (Braga et al., 2005; Elbaum, 2007; Gan et al., 2006; Taylor et al., 2001). Kosciulek’s (1996) use the Circumplex Model of Marital and Family Systems in an attempt to understand why most families end up being extreme after a head injury. That model suggests how families may be helped back into balance. Professionals that do not work with the family as a whole system can easily end up widening the gap between the patient and the caregiver. Community-based rehabilitation has several advantages. It is able to work with the family as a system, offers information to everybody involved in the process and removes much of the need to transfer skills and knowledge from a training environment to the family environment. McMillan et al. (2012) demonstrated that even 12 to 14 years after a head injury it is important that the patient has a self-perception of being capable of influencing the outcome of rehabilitation. That study also stressed the danger of not involving the family as participants in the rehabilitation process. A review by Smith et al. (2006) emphasized that rehabilitation of individuals with TBI should focus on loved and valued life roles as a motivating factor since most individuals just long for the life they had before the injury.

BIFI is one of the few interventions for TBI offering psychological support, an educational component and skill building while treating the family as a system. BIFI is also one of the few interventions based on both research and clinical experience – offering a structured and manual-based intervention with proven effect. According to the review by Boschen et al. (2007), multi-component interventions have a clear advantage in meeting the needs of the family in such a difficult situation as TBI.

5 Protection of social reserves

As mentioned above (and discussed elsewhere – Mogensen & Wulf-Andersen, 2017) the family and home environment of the patient suffering ABI should be considered a significant source of “reserves”. It is, however, important to realise the need for a better support and protection of the family members of ABI patients. Unless specific programs such as BIFI are utilized, detrimental effects are likely to affect not only the primary patient but also her/his immediate social environment – not the least the family members.

Conflict of interest

The authors have no conflicts of interest that might have affected the conduct or report of the presented work. Additionally, sources of funding had no influence on neither the design nor interpretation of the present study.