Independence and Social Integration

The experiential world created by ABI is a challenging one to navigate.  Many survivors have unsatisfying social lives relative to their pre-injury status and many live in restricted settings. Thus effective community reintegration strategies for survivors of ABI are important for a complete recovery.

Independence is a broad category that includes the ability to take care of personal needs and carry out general ADL. The required level of supervision is also an indicator of independence following brain injury. Social integration encompasses a broad milieu of experiences lived by both ABI survivors and their caregivers. Indicators of social integration include recreational pursuits, community access, interpersonal interactions, and relationships. Rehabilitation can be a key component for improving ADL through interventions targeting cognition, vocational skills, psychosocial needs, transitional living and neurobehavioral issues. Patients who engage in rehabilitation – whether it is community-based, in-home care, or a residential transitional living program - have been found to experience improvements in productivity, social integration, and ADL (Hopman et al. 2012).

Individuals with traumatic brain injury (TBI) often face isolation and a lack of social support (Johnson & Davis 1998). Persons having experienced TBI reported having fewer friends and social contacts, and a greater degree of dissatisfaction with social networks than individuals without TBI (Johnson & Davis 1998). Reduced self-esteem and a perceived decline in personal sex appeal have been reported as common personality changes following head injury (Kreuter et al. 1998; Kreutzer & Zasler 1989). Individuals who identified themselves as ‘impaired’ or inadequate in some way did not perceive themselves as confident or attractive, and did not pursue or recognize safe opportunities for pair-bonding or sexual activity (Kreuter et al. 1998; Kreutzer & Zasler 1989). Some individuals disregard sex as an essential need, possibly due to the physical, cognitive, and social consequences of TBI (Goldin et al. 2014). Although social integration is an area of great importance, there are a limited number of studies describing interventions intended to improve the lived experiences of these individuals.

Individual Studies

Table: Independence and Social Integration (Non-Intervention Studies)

Discussion

Compared to healthy individuals, those with ABI are more likely to report poor home integration, social integration, and productivity upon returning to the community (Migliorini et al. 2016). A third of individuals reported dissatisfaction with their level of independence and participation indoors and outdoors as well as in their social lives and interpersonal relationships; the majority were dissatisfied in terms of work and education (Larsson et al. 2013). Independence, participation, and adjustment in relationships, vocation, leisure, and social life are often influenced by functional outcomes post injury, including motor function (Perry et al. 2014), cognitive function, dysexecutive syndrome (Buunk et al. 2015) and self-awareness (Schönberger et al. 2014). Factors related to the injury itself, such as severity (Dharm-Datta et al. 2015; Sandhaug et al. 2015), may not have a significant impact on community reintegration. However, Andruszkow et al. (2013) found that individuals with severe TBI had significantly poorer outcomes in aspects of living condition, vocational status, and relationship status.

External factors within the community present significant challenges for reintegration as well.  Fleming, Nalder, et al. (2014) found that 47% of participants reported physical barriers and 54% reported service barriers following ABI, while Bier et al. (2009) found that 92% reported an increase in social and environmental barriers, which was correlated with severity of injury and time post injury. Physical barriers (Pappadis et al. 2012) as well as financial strain (Nalder et al. 2012) are associated with poor community reintegration. For those injured by assault, the barrier may be greater compared to those injured in accidents (Kim et al. 2013). Services and resources to minimize these barriers are necessary, but the challenge is ensuring that individuals are aware of them and that they are utilized.

Individuals capable of living more independently following ABI, compared to those requiring assistance with physical functioning, revealed greater social functioning and physical health (Forslund, Røe, et al. 2013). Moreover, individuals with greater mobility were more likely to report better cognitive functioning than those who required extra physical care and assistance with activities of daily living (Esbjörnsson et al. 2013). The level of difficulty and assistance required to complete activities of daily living is associated with living arrangements. At one-year post injury, 41% of individuals reported returning to their previous level of independence at home and 38% reported doing the same number of activities of daily living as before their injury (Powell et al. 2007). Lamontagne et al. (2013) reported that individuals in a structured institutionalised setting experienced greater difficulty with social role-related life habits than those living in group-homes or with foster families.

Lastly, changes in personality and emotion following ABI have long-lasting effects on community reintegration (Kaitaro et al. 1995). Clinical concerns related to verifiable deficits in motor function, cognition, and communication should not take precedence when planning long-term rehabilitation interventions, given that psychosocial concerns may be equally disabling.  Barclay (2013) found that high levels of psychosocial distress resulted in lower goal attainment scores but strong levels of family functioning assisted with goal attainment. The same study found females reported significantly higher psychosocial distress and familial emotional response than males (Barclay 2013). As well, individuals may perceive social situations differently following ABI. Ubukata et al. (2014) found that individuals had impaired social cognition following TBI. Evidently, the resolution of psychosocial issues and good family functioning are necessary to advance an individual’s recovery.

 

 

Following ABI, individuals often struggle with independence and integration at home and in the community due to their injury-related deficits, as well as physical and social barriers.

 

 

Individual Studies

Table: Independence and Social Integration (Intervention Studies)

Discussion

Matching individuals with community participants or mentors has been shown to be a simple yet effective strategy in improving perceived levels of social support (Hibbard et al. 2002; Johnson & Davis 1998; Struchen et al. 2011). Support programs can improve an individual’s knowledge of TBI and assist with emotional functioning (Hanks et al. 2012). Social interaction through brain injury support groups can provide individuals with a sense of belonging and reduce feelings of isolation. McLean et al. (2012) studied individuals at a brain injury drop-in centre and found that over a third of patients’ social and leisure activities occurred at the centre. Moreover, after attending a social and reactional program, participants showed improved community integration and reduced problematic behaviours, while their caregivers reported decreased burden (Gerber & Gargaro 2015). Life skills coaching is another available service; Wheeler et al. (2007) found that individuals who participated in such a program showed improvements in community integration; however, there was no improvement on the satisfaction with life questionnaire. In-person support may be an important element of community integration. Compared to usual care, a telephone-based intervention was not found to improve participation or independence (Bell et al. 2011); this is in contrast to previous findings (Wade et al. 1997; Wade et al. 1998).

Social integration can also be improved through multidisciplinary rehabilitation (Goranson et al. 2003). Rehabilitation targeting specific activities and behaviours has been reported as effective in improving activities of daily living, but only in a limited capacity (Carnevale 1996; Giles et al. 1997). After an early-onset inpatient rehabilitation program, 92% of individuals were found to be highly independent and capable of performing most activities of daily living (Lippert-Gruner et al. 2002). Self-awareness training has been found to improve self-perception, self-regulation, and activities of daily living performance, but was not found to impact community reintegration (Goverover et al. 2007; Schmidt et al. 2013, 2015). However, occupational therapy has been shown to improve activities of daily living performance as well as attainment of self-identified goals, satisfaction with subjective tasks, and community reintegration (Trombly et al. 1998). These findings suggest that performance of activities of daily living may be a foundation for community integration, but that increased participation in community activities may also offer functional rehabilitation challenges that enhance activities of daily living performance.

Comprehensive community-based rehabilitation programs have been associated with improved independence, productivity, participation, and adaptability up to one-year post (Johnston & Lewis 1991; Malec et al. 1993). When compared to conventional care, intensive programs have shown significantly improvements in home integration (Goranson et al. 2003), social integration, and functional outcomes (Hashimoto et al. 2006; Powell et al. 2002). Similarly, Cicerone et al. (2004) found that Intensive cognitive rehabilitation was associated with significantly greater improvements in community reintegration, client-reported satisfaction, and neurological outcomes, than standard multidisciplinary rehabilitation (Cicerone et al. 2004). Although both interventions improved community re-integration, the intensive group was over twice as likely to show clinical benefit on the Community Integration Questionnaire (Cicerone et al. 2004). It should be noted that the intense treatment group had a greater time post injury; therefore, it could be argued that these individuals may have had greater incentive for success due to their heightened awareness of loss.

Sloan et al. (2012) reported improvements in community integration for individuals living in a disability-specific setting and in home-like settings, although the former group required higher levels of support. The authors argued that carers may provide more assistance than is needed, thus reducing the patients’ level of independence. Further, Hopman et al. (2012) found that in-home rehabilitation better improved independence and productivity, while rehabilitation in transitional-living settings better improved social integration.

Conclusions

There is Level 1a evidence that self-awareness training improves an individual’s awareness of their disability following ABI.

There is Level 2 evidence to suggest that mentoring or working with a resource facilitator aids in the recovery from a TBI and the successful integration into society.

There is Level 2 evidence suggesting that social peer mentoring programs do result in improvements in perceived social support.

There is Level 2 evidence that intensive outpatient rehabilitation for ABI – whether based in the hospital, clinic, or community – improves levels of independence. These effects were maintained one to three years later.

There is Level 3 evidence that community-based life skills training improves community integration and independence following ABI.

There is Level 4 evidence that community-based rehabilitation programs that use a peer or supported relationship model of intervention have positive effects on social integration.

 

 

Rehabilitation programs focused on social support and integration are effective in promoting independence and productivity in patients with ABI.

More intense and structured cognitive rehabilitation in both group and individual settings, improves participants’ satisfaction with community integration and cognitive functioning outcomes, compared with standard, less structured multidisciplinary rehabilitation.