Surveys have assessed the impact of epilepsy on patients' lives. However, less research regarding the impact on caregivers of adolescents and adults with epilepsy has been undertaken (Lee et al., 2002; Thompson & Upton, 1992; Wheless & Kim, 2002). Living with epilepsy is demanding for both patients and their caregivers (Wheless, 2006). In this study, caregivers presented low scores in emotional role and mental health. This result indicates that emotional problems are interfering with the caregiver's work and other daily activities and that the person may be experiencing depression, anxiety, and loss of vitality.

We found 3 times more women than men in the role of caregiver, which corroborates findings of previous studies (Chapieski et al., 2005; Lee et al., 2002; Shore et al., 2004; Williams et al., 2003). Women experienced a greater impact on QOL and also suffered greater burden as a consequence of caregiving.

In our sample, marital status did not show significant influence on QOL and burden. It has been suggested that a caregiver's partner may help decrease the burden through emotional support (Mark, 2005). However, marital and family conflicts may contribute to the increase of burden on caregivers of persons with chronic diseases (Chou, 2000). For patients, family members may represent the key point for emotional support (Hartshorn & Byers, 1994; Sales, 2003). Also, in this study, educational level, economical status, and employment status did not influence QOL or burden for caregivers. The same result was mentioned in a study by Shore and colleagues (2004), though others have noted deterioration of the family's financial status because of chronic diseases (Schene, 1990).

Caregivers who were entirely responsible for medication felt a higher burden and experienced a greater impact on emotional aspects in their daily activities, on vitality, and on mental health. Bull (1990) suggested that demands and time required in the tasks caregivers perform might generate burden.

Worrying increased the burden on a caregiver. However, not only the quantity but also the quality of care is important when considering burden (Chou, 2000). The caregivers who worried about the patients 24 hours a day reported greater burden and suffered greater impact on emotional aspects of their lives. These effects, consequently, interfered in their daily activities and their physical capacity to perform daily tasks. Burden may result in feelings of guilt, fear, nervousness, and tension, all of which can interfere with caregivers' physical and emotional well-being and disturb their routines.

In our study, the SF-36 domains and BI scores were correlated in caregivers of patients with JME, indicating that seizures affect emotional, social, and physical aspects of caregivers' lives. Lower SF-36 scores correlated with higher burden, as measured by the BI. In the TLE group, however, BI correlated to only three domains of SF-36 (mental health, vitality, and emotional role), demonstrating that for this group, the impact is primarily emotional. Schene (1990) included distress as one of the consequences of providing caregiving for people with chronic diseases; such distress arises through countless negative feelings and emotions, such as uncertainty, ambivalence, insecurity, anger, hate, and feelings of loss.

Importantly, in overall terms, caregivers from both groups felt the impact of epilepsy equally: There was no difference when comparing QOL and burden across the two groups. At first, we did not expect to find this similarity because TLE is usually considered to be more severe than JME, which is viewed as a relatively "benign" epilepsy syndrome. However, JME caregivers face more GTCSs and their consequences than those who care for TLE patients, in whom secondary generalization of simple and complex partial seizures is, in general, controlled by medications. Therefore, for either syndrome, epilepsy had an impact on caregivers' QOL and imposed a mild to moderate burden as a consequence of caregiving. Epilepsy becomes an identity and the focus of the caregivers' lives. The stress of having epilepsy impacts mental health and psychological well-being not only of individuals with the condition, but also of their families (Thompson & Upton, 1992).

In this study, contrary to what has been observed in QOL studies involving patients (Baker, Gagnon, & McNulty, 1998; Djibuti & Shakarishvili, 2003; Leidy, Elixhauser, Vickrey, Means, & Willian, 1999; Mrabet, Mrabet, Zouari, & Ghachem, 2004), seizure frequency and duration of epilepsy did not significantly affect caregivers' lives. According to Baronet (1999), burden in mental illness is determined by the presence of the disease and the result of the activities of caregiving mediated by physical and psychological aspects and the resources of the environment. For some, however, seizure onset and severity, caregivers' concern, and perception of poorly controlled seizures were negatively associated with psychosocial adjustment (Lee et al., 2002).