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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

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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.

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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 the the CQoL questionnaire has been used in patient’s first diagnosis. breast cancer population worldwide previously [19] which is an adaptation from Another instrument employed was the Caregiver Quality of Life in Cancer Malay AKA Epilepsy.18 This instrument (CQoLC). For this study, we used the Malay contained three domains: Awareness, version of CQoL which has been Knowledge and Attitudes which consisted of preliminarily validated by Lua et al.20. From a total of 20 items. Each response score was our study, the value of Cronbach’s alpha range from 0 to 10. The first domain was to reliability for its total scale was 0.71 while detect awareness level which contained five subscale alpha coefficients ranged from items with total score ranging from 0 to 50, 0.40-0.80. whereby 0-10=very low, 11-20=low, 21- 30=moderate, 31-40=high and 41-50=very Statistical analysis high. The second domain was to determine The data was analysed using Statistical knowledge level which contained eight Package for the Social Science (SPSS) items with total score ranging from 0 to 80, version 17.0 for Windows (SPSS, Inc.). All where 0-16=very low, 17-32=low, 33- socio-demographic data was analysed 48=moderate, 49-65=high and 66-80= very descriptively and presented as frequencies high. The last domain measured attitude and percentages. Descriptive statistics were level which was sampled by four items with used to assess the AKA and HRQoL scores total score ranging from 0 to 40, with 0- of family caregivers. An initial normality 7=very negative, 8-15=negative, 16- test, carried out utilising AKA scores as a 23=indifferent, 24-31=positive and 32- dependent variable, showed that normality 40=very positive. The general AKA level requirement was violated (Shapiro-wilk was generated by the summation of these test= p˂0.05; data was positively skewed). three domains with score ranges from 0-170, Non-parametric tests such as the χ2 for whereby 0-33=very poor, 34-67=poor, 68- goodness of fit was employed to test for 101=moderate, 102-135=good and 136- homogeneity of the proportion of categorical 170=excellent. variables, and the Mann–Whitney U test was employed to test between-group score The CQoL19 questionnaire consisted of a comparisons. For the purpose of these total 35 items assessing Burden (10 items), between group comparisons, the patients Disruptiveness (7 items), Positive were regrouped into Good AKA and Poor Adaptation (7 items) and Financial AKA groups i.e. patients who had a Total Concerns (3 items) and eight single items of AKA score higher than the median were Additional Factors (disruption of sleep, considered to have a good AKA level, satisfaction with sexual functioning, day-to- whereas those with a Total AKA score equal day focus, mental strain, informed about to or lower than the sample median were illness, protection of patient, management of considered to have a poor AKA level. patient’s pain and family interest in caregiving. Each question is scored on Results Likert-type response that ranged from 0 (not at all), 1 (a little bit), 2 (somewhat), 3 (quite Sociodemographic characteristics a bit) and 4 (very much). For all items and

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A total of 32 family caregivers participated patients (40.6%) and were living with their in this study. The respondents’ age ranged families (53.1%). Significantly greater from 19 to 66 years old with median age of proportions of the caregivers were within the 48.5 years. According to Table 1, female age group of 39 to 58 years old, already respondents were slightly higher (59.4%) married, were Muslims, with monthly with small number differences compared to income of less than RM 1000 or none at all, males. Most of the carers were married were mothers and were living with their (65.6%), Muslims (93.8%), housewives families. In addition, significantly more (31.2%) with highest education level at Sijil respondents (65.6%) had cared for the Pelajaran Malaysia (SPM) or equivalent to patient for between 1-10 years and admitted Cambridge O’ level (28.1%). These carers being “satisfied” with their caregiving were earning not more than RM 1000 responsibilities. (34.4%), majority were mothers to the

Table 1. Sociodemographic characteristics of epilepsy family caregivers (n=32). Frequency p value* Variable Percentage (%) (n=32) Age (mean ± SD) 46.5 ± 13.4 years 19-38 years 8 25.0 0.021 39-58 years 18 56.2 59-78 years 6 18.8 Gender Male 13 40.6 0.289 Female 19 59.4 Marital status Single 5 15.6 0.001 Married 21 65.6 Widowed 6 18.8 Religion Islam 30 93.8 ˂0.001 Buddhism 2 6.2 Occupation Professional 7 21.9 0.133 Self-employed 9 28.1 Unemployed 2 6.2 Housewife 10 31.2 Others 4 12.5 Education level

Primary school 0.063 25.0 SRP/PMR or equivalent to lower 8 18.8 secondary 6 28.1 SPM or equivalent to Cambridge O’ 9 21.9 level 7 9.4 STPM or equivalent to Cambridge A’ 3 9.4 level 3

Diploma or equivalent

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Degree or equivalent Monthly income None 11 34.4 0.002 ≤ RM 1000 11 34.4 RM 1001-2000 4 12.5 RM 2001-3000 3 9.4 RM 3001-4000 2 6.2 ≥ RM 4001 1 3.1 Living arrangement Alone 6 18.8 0.048 With spouse 9 28.1 With family 17 53.1 Duration of caregiving 1-10 years 21 65.6 ˂0.001 11-20 years 6 18.8 21-30 years 3 9.4 31-40 years 2 6.2 Satisfaction in caregiving Yes 21 65.6 0.001 No 5 15.6 Unsure 6 18.8 • *χ2 test for goodness of fit; p < 0.05 = significant. • SD = Standard deviation.

General AKA and HRQoL profiles The Total AKA level (Table 2) was considered good with scores ranging between 75 and 155 (mean=123.44±16.82, median 122.50). The Awareness level among family caregivers was particularly rated as good whereas Knowledge and Attitude were considered moderate and positive respectively. The HRQoL subscales scores were as shown in Table 3. The highest domain score was for Disruptiveness (median=3.71) followed by Financial Concerns (median=3.67) and Burden (median= 3.20), while Positive Adaptation (median= 2.43) showed the poorest score among all domains. This reflected that the respondents were doing relatively well in their routine role (with minimal disruptions) compared to other issues involved in their HRQoL. Despite this, their abilities to positively adapt to the situation were the worst.

Table 2. General AKA profile (n=32). AKA Domain Mean SD Median Range Interpretation Awareness 33.13 10.30 30.00 0.00-50.00 Good Knowledge 57.81 9.50 60.00 40.00-75.00 Moderate Attitudes 32.50 8.61 35.00 10.00-40.00 Positive Total AKA 123.44 16.82 122.50 75.00-155.00 Good

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Table 3. General HRQoL profile (n=32). HRQoL Domain Interquartile Mean SD Median Range Range Burden 3.01 0.67 3.20 (1.70-4.00) 1.05 Disruptiveness 3.43 0.65 3.71 (2.14-4.00) 0.86 Positive 2.26 0.79 2.43 (0.43-4.00) 1.07 Adaptation Financial 3.36 0.87 3.67 (0.67-4.00) 1.00 Concerns • The score for each domain: 0 = minimum, 4 = maximum.

Comparison of HRQoL family caregivers with different AKA levels Based on Table 4, there were significant differences in HRQoL level between caregivers with Poor (Total AKA median = ≤122.50) and Good (Total AKA median = >122.50) AKA profiles. The Poor AKA group reported more favourable Positive Adaptation and Family’s Interest as well as significantly better Sexual Functioning (p = 0.039). On the other hand, the Good AKA group showed relatively more desirable HRQoL in all other domains, with particular significance for Pain Management (p = 0.040). Overall, carers with Good AKA appeared to have better HRQoL status compared to those in Poor AKA group.

Table 4. Differences in HRQoL level based on AKA profile. Mean Rank (median) Domain Poor AKA Good AKA p value* 15.34 17.66 Burden 0.484 (3.05) (3.30) 13.62 19.38 Disruptiveness 0.074 (3.30) (3.80) 17.00 16.00 Positive Adaptation 0.762 (2.36) (2.43) 14.59 18.41 Financial Concerns 0.224 (3.50) (3.83) 14.91 18.09 Sleep Disruption 0.225 (4.00) (4.00) 19.78 13.22 Sexual Functioning 0.039 (2.00) (0.00) 14.94 18.06 Daily Focus 0.192 (4.00) (4.00) 14.56 18.44 Mental Strain 0.123 (4.00) (4.00) 16.00 17.00 Disease Information 0.755 (2.00) (2.50) 14.88 18.12 Patient Protection 0.174 (4.00) (4.00) Pain Management 13.81 19.19 0.040

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(4.00) (4.00) 17.09 15.91 Family’s Interest 0.637 (4.00) (4.00) • *Mann-Whitney U test; p < 0.05 = significant • Poor AKA = Total AKA median ≤122.50 • Good AKA = Total AKA median > 122.50

Discussion indirectly too explaining their living arrangement with their families. In spite of In a single centre sample of epilepsy family the general burden in caregiving, almost caregivers who were the primary caregivers two-third of the carers admitted being to the patients, the AKA and HRQoL levels satisfied in carrying out their duties, this was were evaluated and compared. The reasons probably due to their natural contentment in were because inadequate awareness, taking care of their loved ones. It has been improper knowledge and negative attitudes shown that caring for the sick (although towards epilepsy were notably known to stressful) could still be “rewarding” in terms promote social stigma and discrimination, of spiritual fulfilment as a previous study leading to misconception and social among HIV/AIDS patients reported that misunderstanding which could later affect several informants felt more enthusiastic to the overall HRQoL of not only patients but manage their caregiving errands.20 also their family caregivers.11,21 In response Furthermore, most of our caregivers had to the needs in epilepsy caregiving, it is of only been entrusted with the responsibilities paramount importance to enhance the AKA for less than 10 years, because it was levels among carers in order to improve possible that negative issues may have not better HRQoL status as well as to allay fears yet emerged or imposed their impacts. and mistrust about this illness.22 Besides that, their strong religious belief as Muslims (majority of respondents) could With regard to the demographic pattern of also be a positive contributing factor i.e. to our cohort, majority of the caregivers were accept whatever fate delivered by God within the age group of 39-58 years old (termed as “takdir” in Malay language).23 because the patients were either their children or spouses i.e. this age group The findings presented in this study, commonly consisted of people already contrary to other investigations in married and had children (from our record, Malaysia24 indicated that the overall AKA patients were mostly between 15-30 years level of epilepsy carers in Kuala Terengganu old). As for religion, most respondents were was actually good, which was relatively Malay Muslims, thus reflecting the common better than what was reported in another demographic norm in the Terengganu AKA study of epilepsy.[21] Nonetheless in population. Their rather low monthly the latter, the focus was mainly on public income of less than RM 1000 (or none) perspectives rather than from direct family could be because they were either self- carers. Despite good awareness level among employed or were not working at all our caregivers, their knowledge level (especially the housewives). Mothers were however was still moderate and lack of primarily the carers, understandably because consistent and accurate information about most patients were actually teenagers who this clinical condition seemed to be the main were still under parental care and support, determinant in shaping their apparently still

MJP Online Early MJP-01-05-14 limited understanding.25 Moreover, false domains particularly in Pain Management beliefs may still exist, which could have (this particular question asked about their easily been propagated from one to another burden in managing the pain of their loved within the same close-knit community, thus ones). Pain Management was included as worsening the matter. [18] Importantly, a one aspect of caregiving involving both recent study have indicated that the physical and emotional demands, in which Malaysian education system’s attempt to family caregivers became particularly improve healthcare AKA by integrating central to home-care management efforts, health-related subjects into the standard hence significantly affecting their curriculum was indeed very proactive, but HRQoL.28,29 For example in our Good AKA unfortunately, no emphasis was given on group, majority were mothers who usually more specific topics such as epilepsy.26 On cope well with stressful and ill conditions the other hand, attitudes toward this disease related to their loved ones especially were encouragingly positive and this children. These abilities were naturally favourable outcome may have stemmed derived from their previous experience of from the familiarity of this disorder among child-caring, thus the current epilepsy-caring the people or communities previously could not have significantly impacted on affected by similar problem. This their daily life routines. In contrast, the Poor phenomenon has been identified in a similar AKA respondents were perhaps unable to research whereby the more exposed people juggle their routines due to being less aware were to a certain condition like epilepsy, the and less knowledgeable, which later resulted better their attitude seemed to be towards in comparatively worse Pain Management. that disorder.10 Although the Good AKA group experienced better HRQoL, the Poor AKA unexpectedly With respect to general HRQoL status, it also did well in Sexual Functioning which was clear that our carers were negatively seemed to suggest that the caregiving duties affected by Positive Adaptation since it have not negatively affected this aspect of recorded as the lowest score of all domains. HRQoL. Consistent with our findings, several investigations have reported that most Nonetheless, our study utilised a cross caregivers (particularly the parents) were sectional design which relied upon only a struggling with great difficulties to admit single public hospital enrolment resulting in and accept the patients’ diagnosis.27 They rather limited sample size which inevitably were also very concerned about the created bias for generalisation. As this study unpredictable nature of epilepsy, prognosis was based on convenience sampling, other and the side effects of anti-convulsants as “out-of-control” external confounders (e.g. well as the “epilepsy” label itself. All these education level, duration of care) could have issues may have imposed anxiety, also distorted the results, besides recruiting uncertainties and ultimately problems in respondents from a place largely dominated attempting to positively adapt to the by Malay Muslims. Again, the already small challenging situation. sample did not permit more reliable statistical tests such as regression analysis or As expected, differences in HRQoL profiles ANCOVA to be conducted. could be seen between the Poor AKA and Good AKA groups. Carers with Good AKA consistently scored higher for almost all

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Conclusion References It can be concluded that our findings exhibited important outcomes that 1. England MJ, Liverman CT, Schultz reinforced the relationship between AKA AM, Strawbridge LM. Epilepsy and HRQoL among epilepsy carers. Despite across the spectrum: promoting the limitations, this study somehow health and understanding. A managed to reveal that AKA level could be summary of the Institute of Medicine influential to the HRQoL status of family report. Epilepsy Behav. 2012; caregivers, with increased AKA being 25:266-276. favourable to better HRQoL. Consequently, caregivers should have access to constant 2. Kwan P, Brodie MJ. Early epilepsy education as much as possible, identification of refractory epilepsy. participate in research and be active N Engl J Med. 2000; 342(5):314-9. advocates for improvements in caregiving and their HRQoL.1 Continuously-enhanced 3. Begley CE, Famulari M, Annegers AKA and HRQoL status would not only JF. The cost of epilepsy in the United mean that their lives are more adaptable and States: an estimate from population- bearable but the caregiving process could based clinical and survey data. also be carried out at its optimum all in the Epilepsia. 2000; 41(3):342-51. patients’ best interest. Therefore, future research should attempt to develop 4. Shafiq M, Tanwir M, Tariq A, Kasi structured and comprehensive epilepsy PM, Zafar M, Saleem A, et al. educational programmes in the midst of Epilepsy: public knowledge and providing the best therapies coupled with attitude in a slum area of Karachi, optimal caregiving quality. Pakistan. Seizure. 2007; 16:330-7.

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Corresponding author Pei Lin LUA Head, Community Medicine Research Cluster Centre for Community Development and Quality of Life Faculty of Medicine and Health Science Universiti Sultan Zainal Abidin (UniSZA) Kampus Kota, 20400 Kuala Terengganu Terengganu, MALAYSIA. Tel: +60-9-6275516 Mobile: +60-17-6228430 Fax No: +60-9-6275778

Email: [email protected] / [email protected]