MJP Online Early MJP-01-05-14 ORIGINAL PAPER Caregiving for Epilepsy: Awareness, Knowledge, Attitude and Health-Related Quality of Life of Family Caregivers Lua PL1, Nor-Khaira-Wahida K2, Zariah AA3, Lee KF4 1Institute for Community Development and Quality of Life (i-CODE), Universiti Sultan Zainal Abidin (UniSZA), 20400 Kuala Terengganu, Malaysia 2Faculty of Medicine and Health Sciences, Universiti Sultan Zainal Abidin (UniSZA), 20400 Kuala Terengganu, Malaysia 3Medicine & Neurology Department, Hospital Sultanah Nur Zahirah (HSNZ), 20400 Kuala Terengganu, Malaysia 4Paediatrics Department, Hospital Sultanah Nur Zahirah (HSNZ), 20400 Kuala Terengganu, Malaysia Abstract Living with epilepsy is equally demanding for both patients and their caregivers. The caregivers’ tasks are not limited to caring for the patients only but also the need to improve their awareness, knowledge and attitude (AKA) level as lack of understanding has a major impact on health-related quality of life (HRQoL). Little is known about the influence of AKA on family caregivers’ HRQoL. Objective: Therefore, this study aimed to assess and relate the AKA and HRQoL profiles of epilepsy carers. Methods: This prospective, cross-sectional study included a sample of 32 epilepsy family caregivers who were recruited from the Neurology and Paediatric Clinics of Hospital Sultanah Nur Zahirah (HSNZ), Kuala Terengganu. Results: Majority were Muslims (93.8%), married (65.6%), housewives (31.2%), who earning monthly income of not more than RM 1000 (34.4%) and was the patients’ mothers (40.6%). The Total AKA score was generally good (mean=123.4±16.8, median 122.5) with awareness being good, knowledge moderate and attitude positive whereas HRQoL score for Disruptiveness was the highest (good) compared to other domains. There were significantly higher scores for Sexual Functioning (p = 0.039) among Poor AKA group and Pain Management (p = 0.040) among Good AKA. Conclusion: The overall outcomes signified that family caregivers with Good AKA experienced better well-being compared to those with Poor AKA while carrying out their roles as caregivers. Consequently, carers clearly require constant epilepsy education to enhance skill-building in order to understand and keep updates with the disease, thus indirectly sustaining their desired HRQoL status from time to time. Keywords: Epilepsy, Family Caregivers, Awareness, Knowledge, Attitude, Health-Related Quality of Life MJP Online Early MJP-01-05-14 Introduction purpose and potential side effects of medications, safety concerns to the risks and Epilepsy is a spectrum of disorders with a potential consequences of seizures.9 range of severities, widely differing seizure Although some studies have suggested that types and causes, an array of co-existing patients and their families’ attitude conditions and varying impacts on patients regarding epilepsy have become less and families.1 Characterized by seizures that negative over time, the problems of stigma are unpredictable in frequency, specific remain widespread.1 medications and other treatment options could control its occurrence but the impact In the last two decades, a number of of the disease goes well beyond it.2 Living investigations which were associated with with epilepsy patients exposes one to the psychological consequences of epilepsy challenges at home, school, workplace and have demonstrated the impact of this disease other outdoor places since epilepsy can on patients and caregivers HRQoL. Family impose immense burden on both patients caregivers with a good awareness, and their family caregivers, causing loss in knowledge and attitude towards this illness quality of life (QoL) and daily productivity.3 had been reported to have better HRQoL Awareness and understanding of epilepsy scores.10 Therefore, a systematic study nature are hence critical to create a better relating to awareness, knowledge and attitude among family caregivers in order to attitudes is crucial to effectively deal with provide a better care for the patients as well the misconception of epilepsy11 especially as improve their health-related quality of life among family caregivers in order to improve (HRQoL). their HRQoL. Studies on family caregivers were necessary as the subject have become Awareness is an important element for of upcoming interest to researchers due to family caregivers of epilepsy which helps the lack of general research conducted offer general perception and picture towards among caregivers.12 the condition,4 whereas knowledge is another crucial factor which is associated In recent times, a lot of interest have arose with the attitudes towards this disease. Many on factors associated with epilepsy patients studies have shown that people with less and their caregivers HRQoL,13 whereby awareness and knowledge about epilepsy these factors were dissected as follows: 1) demonstrated poorer attitudes.5 The clinical variables (seizure frequency and magnitude of negative attitudes was shown severity, duration of illness, medication side to be aggravated by the presence of effects), 2) social disadvantages (divorce, misconception of epilepsy which includes unemployment, social stigma) and 3) family the perception of epilepsy as a form of circumstances (social support, family insanity, being untreatable, contagious, and caregivers’ character). Accordingly, hereditary or a form of mental retardation.6-8 epilepsy family caregivers were at high risk of anxiety, which could lead to decreased Most research consistently demonstrated HRQoL.14 Moreover, the HRQoL of the that epilepsy patients and their families do carer may seriously be affected by the not have a comprehensive understanding of attitudes of their other family members and the basic information about the illness environment, if the people around were also ranging from how the diagnosis was made, unaware or uneducated about this illness. seizure precipitants, types of seizures, the Thus, receiving helpful information and MJP Online Early MJP-01-05-14 education15 becomes a critical issue because purpose, the primary family caregivers early perceptions may affect long-term referred to carers who were involved in a adjustment to the condition.16 This could significant amount of time, energy and play a key role in helping the carers money over potentially long periods to look understand and learn about epilepsy more after the patients.17 The requirements for extensively in order to build a positive participants included: 1) age of 18 years old attitude towards the condition.1 and above, 2) capable of completing the questionnaires and 3) can read, write, This study aimed to evaluate the level of understand and communicate in Bahasa awareness, knowledge, attitude (AKA) and Melayu or English. HRQoL among epilepsy family caregivers. The relationship between awareness, Data collection and study procedure knowledge and attitude levels and HRQoL Data collection was carried out between scores were also being compared to February to May 2014. The respondents investigate how AKA can influence the were chosen through the Neurology and HRQoL level. Paediatric Clinics patient database list two weeks before study commencement. The list Methods consisted of the names of regular epilepsy patients who attend the treatment in these Ethical approval clinics which always be accompanied by Official ethical approval was obtained from their family caregivers. The caregivers the Ministry of Health Research and Ethics needed for this study were those identified Committee Malaysia (MREC) with the and recommended by the staff nurses. reference number, KKM/NIHSEC/800-2/2/2 Jld.3.P13-686. A contact was established On the meeting day, the caregivers were with the respective clinic coordinators initially invited into a designated room for including the staff nurses and medical privacy of discussion. They were provided assistants to discuss the meeting day, date with a thorough explanation on the study and time for data collection. The discussion purposes and its procedure as written in the also included the list for suggested potential Family Caregiver Information Sheet. family caregivers who could be the Written consent form was later signed upon respondents along with the date and time to participation agreement by the respondents, meet, study procedures, study duration and who later proceeded to complete the set of requirements needed from the respondents. questionnaire as follows: 1) Personal Information Form, 2) Malay AKA Epilepsy Study design and sample selection and 3) Caregiver Quality of Life (CQoL). This was a prospective, cross sectional study whereby all participants were recruited from Instrument Neurology and Paediatric Clinics of The Personal Information Form was given Hospital Sultanah Nur Zahirah (HSNZ), to obtain the common demographic Kuala Terengganu, Malaysia. A total of 32 characteristics such as gender, age, race, consenting family caregivers agreed to religion, marital status, education level, participate in this study. All respondents monthly income, relationship to patient and were among primary family caregivers who caregiving information (i.e. duration of accompanied the epilepsy patients during caregiving, first diagnosis of patient’s the weekly routine clinic day. For our disease and satisfaction in caregiving. MJP Online Early MJP-01-05-14 Responses were recorded in the form of domains that measure HRQoL, a higher multiple-choice answers except for the score represents a better HRQoL. Initially, information of caregiving duration since