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Description
Abstract: The purpose of this study was to compare quality of life and burden in 100 caregivers of adolescent and adult patients with epilepsy that started in adolescence. We invited caregivers of 50 patients with temporal lobe epilepsy (TLE) related to mesial temporal sclerosis and caregivers of 50 patients with juvenile myoclonic epilepsy (JME) to participate. After the caregivers answered a sociodernographic questionnaire, they answered the Brazilian version of the Burden Interview (BI) Scale and we assessed their quality of life using the 36-Item Short-Form Health Survey (SF-36). The mean ages of patients were 25.4 and 36.4 years and epilepsy duration was 14 and 25.6 years in the JME and TLE groups, respectively. We found a mild to moderate burden on caregivers in both groups, with a BI average score of 25.5 for JME and 30.7 for TLE. Caregivers in the JME group had lower scores in all domains of the SF-36 and reported higher burden. Low scores were also seen in three domains for the TLE group. These results suggest that caregivers of patients with both epileptic syndromes experience interference in their lives. When we compared the two groups, we found no difference between caregiver data on SF-36 and BI. Quality of life was significantly compromised in caregivers of patients with JME and TLE, and the two groups were burdened to a similar degree (mild to moderate). Nurses can carry out psychoeducative programs with the objective of diagnosing the impact of epilepsy in the family, decreasing burden, and improving quality of life for caregivers.
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Epilepsy has a great impact on the lives of patients and their caregivers. In adolescence, epilepsy has a prevalence of 1.5%-2% (Wheless & Kim, 2002). Its impact can be characterized in terms of social repercussions, such as isolation, prejudice, and unemployment, or in terms of emotional influences, as seen in personal relationship difficulties, negative self-image, and low self-esteem (Devinsky & Penry, 1993). The psychosocial problems experienced by people with epilepsy cause greater loss to quality of life (QOL) than the seizures themselves (Austin, 1996; Thompson & Grant, 2001). Besides the impairment in patients' lives, the impact of epilepsy can be seen in families, resulting in burden and decreased caregiver QOL (Sales, 2003).
Burden on caregivers of persons with epilepsy has been studied mainly in children (Austin, 1996; Austin, Dunn, Johnson, & Perkins, 2004; Chapieski et al., 2005; Rodenburg, Meijer, Dekovic, & Aldenkamp, 2006; Shore, Austin, & Dunn, 2004; Williams et al., 2003). However, epilepsy that starts in adolescence may also have a significant impact on family or caregiver lives. Two epileptic syndromes have onset in adolescence. One of them, temporal lobe epilepsy (TLE) due to mesial temporal sclerosis, is the most common type of human epilepsy. It takes the form of a progressive syndrome comprised of an initial precipitating insult, mainly febrile seizures occurring early in life, followed by a seizure-free interval and then spontaneous recurrent seizures in adolescence. Drug treatment often fails later in life (Wieser, 2004). It is a syndrome of special clinical interest because it comprises the majority of patients with medically intractable epilepsy and is accompanied by high levels of psychiatric comorbidity and psychosocial difficulties, which often result in poorer QOL. At the other extreme are idiopathic generalized epilepsies with variable phenotypes--the most common being juvenile myoclonic epilepsy (JME)--which contribute to 5%-11% of all epilepsies and are characterized by myoclonic jerks, generalized tonic-clonic seizures (GTCSs), and absence seizures with normal cognition (Commission on Classification and Terminology of the International League Against Epilepsy, 1989; Panayiotopoulos, Tahan, & Obeid, 1991).
The purpose of this study was to evaluate and compare QOL and burden in caregivers of teenagers and adults with either TLE related to mesial temporal sclerosis or JME. We sought to determine whether caregivers of patients with these specific epileptic syndromes suffered significant burden and decreased QOL.
Methods
Design
This study involved 100 consenting caregivers, 50 of patients with TLE and 50 of patients with JME who received treatment in the Epilepsy Section of the Hospital Sao Paulo, Federal University of Sao Paulo, Sao Paulo, Brazil. The ethics committee of the institution approved this survey.
For this research, caregiver was defined as the closest family member or friend who lived with the patient or as any person who spent a greater part of his or or her life with the patient, witnessed seizures, and took active part in treatment (e.g., attended physician appointments as a companion and cooperated with the patient to achieve compliance with treatment). The eligible consenting caregivers had to be older than 15 years of age and capable of answering the... |
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