Following ABI, someone must take on the responsibility of ensuring the injured individual receives proper care. The literature covers prevalent issues pertaining to caregivers, including: caregiver burden, adopting new roles, unmet family needs, and challenges with family functioning (Godwin & Kreutzer 2013). Caregiver burden broadly encompasses all of the responsibilities and overall impact faced by those who assume the role of caring for someone with ABI. The role may be taken on by a “primary caregiver”, often a family member, or distributed among a larger network of individuals.
The caregiver role can be both physically and emotionally challenging. These challenges are influenced by changes in the injured individual’s emotional control, personality, behaviour, physical abilities, and cognitive abilities (Brooks et al. 1986; Hall et al. 1994; Jacobs 1988; Kreutzer et al. 1994; McKinlay et al. 1981; Oddy et al. 1978; Thomsen 1984; Willer et al. 1991). The situation may be compounded by loss of income and/or transportation, increased care and medication costs, ongoing therapy demands, and a lack of community-based services. Caregiver burnout is a significant issue (Saban et al. 2013), and so it is important to evaluate the long-term impact of these variables and provide educational and support services to help caregivers effectively cope.
The caregiving experience is heavily influenced by the injury of the individual receiving care. The initial severity of injury and subsequent level of recovery (Bayen et al. 2016; Bayen et al. 2013; Boycott et al. 2013; Kreutzer et al. 2009; Manskow et al. 2015) are often reflective of the degree of burden. Caregiver strain is influenced by the individual’s level of disability (Bayen et al. 2013; Davis et al. 2009; Kreutzer et al. 2009), dysexecutive function (Bayen et al. 2016; Bayen et al. 2013; Goodwin et al. 2016), memory, communication abilities (Anderson et al. 2013; Boycott et al. 2013; Stevens et al. 2012), and overall neuropsychological functioning (Lehan et al. 2012; Stevens et al. 2012). Additionally, community integration (Gerber & Gargaro 2015; Kelley et al. 2014) and social functioning (Coy et al. 2013) can have an impact. Caregiver perceptions of the individual’s level of impairment can also affect the levels of burden being felt (Chronister et al. 2016; Kelley et al. 2014; Nonterah et al. 2013; Stevens et al. 2012). Caregiver characteristics, such as coping strategy, can also influence their level of stress (Chronister et al. 2016; Davis et al. 2009; Katz et al. 2005). Fortunately, caregiver burden has been found to decrease over time (Bayen et al. 2016; Dillahunt-Aspillaga et al. 2013), as the individual’s outcome improves and the caregiver becomes accustomed to providing care.
The need for social relationships and support systems in caregiving has been reported as well. Caregivers who meet with friends less frequently and receive less social support typically feel more burdened and isolated (Chronister et al. 2016; Coy et al. 2013; Davis et al. 2009; Liu et al. 2015; Manskow et al. 2015; Stevens et al. 2013). The role of the family has proven to be a vital source of support for caregivers. Perrin et al. (2013) reported that families scoring higher in cohesion, communication, and functioning resulted in lower caregiver burden and depression, and higher levels of satisfaction with life. Families whose members supported each other, openly expressed their feelings, and were capable of flexibility demonstrated improved adjustment to the consequences of brain injury (Martin 1988). Leibach et al. (2014) found that the “five family needs” – household, informational, health, financial, and social support – were significantly associated with caregiver burden, depression, anxiety, life satisfaction, and self-esteem. Caregivers reported that their social needs were most affected by their relative’s degree of impairment (Sung et al. 2013). Therefore, interventions that address these family needs can reduce the negative effects of caregiving, while interventions aimed at caregiver mental health can provide caregivers with the tools necessary to meet the needs of the family.
Education and access to information have been found to have a positive effect on burden. Caregivers regarded health information support as a valuable resource, particularly in the early stages of TBI care (Calvete & de Arroyabe 2012; Liu et al. 2015). When these resources are unavailable or inaccessible, it can negatively impact caregiver mental health. Doyle et al. (2013) revealed that the majority of unmet caregiver needs revolved around health information regarding the patient, thus increasing their levels of anxiety and depression. However, ways of helping caregivers implement this information may be needed in order for education to be effective. In fact, Dillahunt-Aspillaga et al. (2013) found that caregivers felt their most useful resource was patient-caregiver support and advocacy.
There is Level 2 evidence that the injury severity, recovery, disability, and impairment of the injured individual are correlated with the degree of caregiver burden.
Primary caregivers of individuals with ABI experience significant levels of burden, stress, anxiety, and depression.
The presence of cognitive, behavioral, and emotional changes in individuals with ABI are strong predictors of anxiety and depression in their caregivers and relatives.
Caregivers who are socially isolated feel more burdened, isolated, and dissatisfied.
Families that are cohesive, flexible, and communicative adjust better to the consequences of ABI and experience less caregiver strain.
Depression among caregivers
A third of caregivers demonstrate clinical symptoms of anxiety, depression and adjustment disorders and up to half report elevated levels of distress (Kreutzer et al. 1994; Marsh et al. 1998; Vogler et al. 2014). Although the entire family is impacted by an individual’s injuries, those directly responsible for their care are more likely to have depression and anxiety (Ponsford et al. 2003).
Caregivers typically make large sacrifices while caring for others and in doing so may become socially isolated, mentally and physically drained, and/or financially burdened. The responsibility of providing care for individuals with ABI can lead to increased levels of stress and increased risk of depression, which may be greater than those experienced by non-ABI caregivers (Warren et al. 2016). Caregiver depression is significantly correlated with their burden, life satisfaction, and coping strategies (Gulin et al. 2014) Depression rates among ABI caregivers ranged from 22% to 51% (Calvete & de Arroyabe 2012; Doyle et al. 2013; Gillen et al. 1998; Ponsford et al. 2003; Vogler et al. 2014). However, the rates of clinically significant levels of depression were noted to be slightly lower, within the range of 22% to 27% (Doyle et al. 2013; Ponsford et al. 2003). From a single study, clinically significant levels of anxiety were present in 25% of family members interviewed (Ponsford et al. 2003). Individuals may not only become depressed when taking on the role of caregiver, but they may already have pre-existing depression that is exacerbated by the new expectations and responsibilities required of them. Gillen et al. (1998) found that 69% of caregivers within their study who had major depression were depressed prior to their loved one’s injury. Therefore, depression among caregivers should be monitored carefully and treated appropriately.
Depression rates among caregivers for individuals with ABI range from 22% to 51%.
Caregiver depression is strongly associated with their degree of burden, life satisfaction, and coping strategies.
Interventions focused on caregiver burden
Despite caregiver burden being well described in the literature, there is less research evaluating interventions that cater to caregivers. Using a controlled retrospective design, Albert et al. (2002) evaluated the effectiveness of a social work liaison program in the three domains of caregiver experience: Burden, Satisfaction and Mastery. The following table summarizes the characteristics encompassed within each of these three domains.
Table: Common Indicators of Caregiver Burden, Satisfaction and Mastery (Albert et al. 2002)
Evidence from Albert et al. (2002) suggests that a relatively low-cost, non-intensive social work liaison intervention may offer substantial benefit to caregivers in diminishing a variety of common indicators of burden, and in improving caregiver satisfaction and mastery. However, the credibility of these results is compromised when one considers that Albert et al. (2002) did not compare concurrent groups of patients, but rather compared their results to a historical sample of patients who had not had the benefit of social work liaison and were only able to contact about 30% of the individuals who participated in the program.
Programs that provide education and support to caregivers and their families can help alleviate caregiver burden and improve patient outcomes. Sinnakaruppan et al. (2005) studied the effects of an educational program administered to caregivers and their family member with ABI on reducing distress and improving coping. The educational program led to greater reduction in depression and improvements in instrumental social support than the waitlist group. However, it has been reported that the distribution of educational material alone does not have the same impact of educational programs (Morris 2001). As such, researchers have explored the benefit of education in combination with other interventions. Rivera et al. (2008) compared caregivers who received problem solving training and education to those who received only education. Both groups showed decreased burden and increased life satisfaction, but the treatment group showed greater improvements in depression, health complaints, and dysfunctional problem solving (Rivera et al. 2008). Kreutzer et al. (2009) studied families who participated in an intervention program that focused on cognitive behavioural therapy and education on the family dynamic (e.g. managing stress). The authors found that family members benefitted in terms of meeting needs and overcoming service obstacles, although the program did not strongly improve their family functioning, life satisfaction, or psychological wellbeing. In a more recent study of the same intervention, Kreutzer et al. (2015) reported that the program significantly reduced strain and perceived criticism of caregivers and family members. Carnevale et al. (2002) examined the impact of behavioral management training and education on the amount of stress and burden experienced by caregivers. While the combination program improved outcomes, there was no demonstrated benefit when compared to education alone.
Despite the effectiveness of a support program, caregivers may not have the time or ability to attend them. Home-based interventions can alleviate the additional stress that accompanies attending support programs, which makes them more appealing to caregivers. Smith et al. (2006) found that home-based rehabilitation services showed more favourable outcomes in terms of fulfilled needs and family functioning when compared to traditional outpatient services. Studies have also examined programs provided at home via telephone or teleconference technology. Powell et al. (2016) reported that caregivers receiving education and support from a telehealth program showed improved coping ability and psychological wellbeing, but not reduced caregiving outcomes, when compared to standard care. As well, caregivers attending a teleconference support program reported less burden and distress than those attending an on-site support group (Brown et al. 1999). It is imperative that caregivers be made aware of available services prior to discharge, as it has been shown to help caregivers feel better prepared for the future and feel less distress (Bowen et al. 2001).
There is Level 1b evidence that caregivers supported through a telehealth program showed greater improvements in psychological outcomes and coping strategies than those receiving standard care.
There is Level 2 evidence that educational programs provided to caregivers and their families reduce burden and service obstacles.
There is Level 2 evidence that a social work liaison reduces caregiver burden, and improves caregiver satisfaction and mastery.
There is Level 2 evidence that programs providing education in combination with problem solving training are more effective in reducing dysfunctional problem solving than educational material alone.
Caregivers often feel unprepared for the caregiving role prior to discharge of the individual with ABI.
Caregivers supported through programs that combined education with training or therapy experience less burden and better support than those receiving education alone.
Caregivers supported through home-based interventions experience less distress than those participating in on-site groups.