Positive psychological interventions for people with ...

Epilepsy & Behavior 80 (2018) 90–97

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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh

Positive psychological interventions for people with epilepsy: An assessment on factors related to intervention participation Siew-Tim Lai a, Kheng-Seang Lim a,⁎, Venus Tang b,c, Wah-Yun Low d a

Division of Neurology, Department of Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia Department of Clinical Psychology, Prince of Wales Hospital, Hospital Authority, Hong Kong Division of Neurosurgery, Department of Surgery, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong d Research Management Centre, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia b c

a r t i c l e

i n f o

Article history: Received 5 August 2017 Revised 22 December 2017 Accepted 22 December 2017 Available online xxxx Keywords: Positive psychology Epilepsy Wellbeing Preferences Intervention Feasibility

a b s t r a c t Background: Positive psychological interventions (PPI) are increasingly employed as a coping strategy with physical and mental conditions, including neurological diseases. Its effectiveness on improving wellbeing in people with epilepsy (PWE) has been shown in a few studies. This study aimed to explore factors related to participants' willingness to engage in psychological interventions from the perspective of patients with epilepsy. Methods: Participants answered a needs assessment questionnaire eliciting information about their illness perception (Brief Illness Perception Questionnaire (Brief-IPQ)), emotions (Hospital Anxiety and Depression Scale (HADS)), willingness to participate in psychological interventions, preferences in types of PPI and intervention designs, as well as barriers in seeking mental health services. Results: A total of 154 patients with epilepsy participated, with a mean age of 37.3 years (range 16–86 years). Most patients had focal epilepsy (68.2%), and drug-resistant (59.1%). Majority (71.4%) of them indicated a strong willingness to participate in PPI. Out of nine types of PPI, character strengths, mindfulness-based and expressivebased interventions were highly preferred. Those with negative illness perception (p = 0.001), anxiety (p = 0.004), and being unemployed (p = 0.048) were more willing to participate in PPI. Most participants preferred group rather than individual session, and a shorter duration (30 min) was favored by most. Conclusion: This study captured the self-report willingness to participate in psychological interventions. Findings suggested that psychological interventions delivered in short-group session were highly preferred. Future study is required to determine the feasibility of such design for patients with epilepsy. © 2017 Elsevier Inc. All rights reserved.

1. Introduction The incidence of psychological disorders is higher in people with epilepsy (PWE) than in the general population [1]. It is estimated that 20–30% of PWE have psychiatric comorbidities; the prevalent is substantially higher in those with drug-resistant epilepsy [2]. The profound physical, psychological, and social consequences of epilepsy can impact quality of life (QOL) due to various reasons, including medication side effect, cognitive disturbances, unpredictability of seizure, its stigmatizing nature, and academic and vocational difficulties [3,4]. Considerable efforts have been dedicated to develop psychological interventions for PWE aiming to improve QOL and other health outcomes. These treatments include educational intervention [5], cognitive-behavioral or behavioral treatment [6], self-management intervention [7], and mind–body intervention [8–10] – most showed evidence in reducing ⁎ Corresponding author at: Neurology Laboratory, 6th Floor, Menara Selatan, University Malaya Medical Centre, 50603 Kuala Lumpur, Malaysia. E-mail address: [email protected] (K.-S. Lim).

https://doi.org/10.1016/j.yebeh.2017.12.019 1525-5050/© 2017 Elsevier Inc. All rights reserved.

psychiatric symptoms, modifying maladaptive beliefs, and attitudes toward the diagnosis. A number of recent reviews also summarized the evidence of using psychological treatment in enhancing QOL [11,12]. Quality of life is a broad, multidimensional concept that includes subjective evaluations of both positive and negative aspects of life [13]. Studies have shown that PWE diagnosed with depression have poorer QOL, mediated by negative illness perception [14]. According to Leventhal's self-regulation model (SRM), behavior in relation to illness depends on individual's perception of their health problems. He proposed five components in the SRM, namely the following: illness identity, causes, timeline, consequences, and cure/controllability [15]. Beliefs held by patients about their disease determine their sensitivity to depressions and its impact on QOL. Moreover, anxiety in epilepsy, in particular – seizure worry, has been found to be the most important factor affecting QOL [14]. According to a review by Kotwas et al. on self-control of epileptic seizures, the wellbeing and QOL of individuals were influenced by self-perceived control over their seizures and health. Those with greater control showed more resilience and reported higher QOL [14]. Therefore, understanding illness perception in relation

S.-T. Lai et al. / Epilepsy & Behavior 80 (2018) 90–97

to intervention participation may help future design of psychological interventions. That being said, enhancing individuals' resources (i.e., inner potentials) to improve and maintain personal health is an important issue, especially when the epilepsy is drug-resistant. Most of the existing psychotherapeutic techniques for PWE, however, oriented toward symptomatic reliefs; the promotion of pursuing psychological wellness and positivism were not as much emphasized. Positive psychology (PP) focuses on synthesizing both positive and negative human life experiences to understand and actualize human potential [11]. It considers disorder or distress as the genesis to develop interventions that promote good mental and physical health. It is showed that psychological wellbeing is possible via a deliberate attempt to engage in ‘positive interventions’ [11,16]. The most common components in these interventions include the cultivation of positive feelings, behaviors, and/or cognitions, e.g., gratitude visit, savoring, and usage of character strengths [11]. Positive psychological interventions (PPI) had been applied on medical populations such as people with diabetes [17,18] and breast cancer [19]. Evidence showed that these approaches could help reduce negative emotion and relapses, improve medication adherence, and prolong longevity. The effectiveness of PPI on people with neurological disorders was found in a handful of studies in patients with epilepsy, traumatic brain injury, migraine, and patients with neuromuscular disease [8–10,20–22]. The identified techniques included mindfulness-based approaches, counting blessings, and signature strengths. These interventions showed benefits on a wide range of health measures, including psychological wellbeing (e.g., increased positive affect and life satisfaction), illness conditions (e.g., reduced symptoms distress), cognitive functions (e.g., improved attention span and working memory), as well as emotional regulation (e.g., decreased anxiety/depression symptoms). One of the commonly used PPI for PWE was mindfulness-based techniques (MBT). This method involves training on the observation of one's own mental state, using attention control and process-orientated awareness. Findings showed improvement in QOL, and psychological states [8,23,24], although the effect on seizure control was not consistently reported in other studies [9,10]. Malaysia is in a unique position as it serves as a confluence of three Asian cultures (i.e., Malay, Chinese, and the Indian) giving rise to three culturally bound beliefs that may influence the patients' decision to seek psychological treatments. Although the public has free access to the health professionals in Malaysian government hospitals, there are still barriers (e.g., time constraints, illness perceptions) in seeking mental health services. At present, there are no studies exploring treatment barriers to psychological care in PWE in Malaysia. Hence, it is useful to uncover factors that may dissuade them from seeking proper treatments. Many factors could affect the effectiveness of psychological treatments. Among which, the motivation of the participants was one of the most important variables. Low motivation to treatment would lead to dropout and nonadherence to treatment techniques [25]. To boost underutilization of services, it is worthwhile to explore from their perspectives, the design and preferences of psychotherapeutic interventions. To address these issues, the present study aimed to examine the factors associated with self-report willingness to participate PPI among PWE. We hypothesized that the success of PPI depends on the willingness to participate, which can be affected by sociocultural, clinical, and psychological factors. 2. Methods 2.1. Design This study used a cross-sectional design. Participants were required to complete a pen-and-paper needs assessment questionnaire. This study was approved by the University Malaya Medical Center (UMMC) Ethics Committee (MECID.NO: 2016814019). Written informed consent was obtained from each participant.

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2.2. Participants and recruitment A consecutive sampling method was adopted to recruit participants who were attending the clinical consultations at the UMMC neurology clinic. All patients (16 years or older) with a diagnosis of epilepsy by a neurologist who were able to read and write English were recruited. Patients with any of the following criteria were excluded: 1) a diagnosis of severe learning disability or cognitive impairment that affects individuals who are unable to comply with study procedure, 2) substance dependence, 3) suicidality, and 4) limited language proficiency. The screening and assessment on the inclusion and exclusion criteria were based on patient's medical records and the neurologist's (KSL) opinion. 2.3. Procedure All eligible participants were approached in clinic by a research assistant who was a postgraduate health psychologist trainee (STL). The background of the study was explained, and they were given an information sheet that contained details of the study. They were recruited upon written consent. All participants completed the needs assessment questionnaire on the same day of recruitment. The questionnaire comprised the following sections; it required approximately 15 min to complete. 2.3.1. Clinical and sociodemographic information The needs assessment questionnaire included a sociodemographic section inquiring age, sex, education, employment, marital status, and psychiatric comorbidity. Clinical information of epilepsy was obtained from the clinical epilepsy database, namely age at seizure onset, disease duration, seizure types, number of antiepileptic drugs (AEDs), and seizure control. Drug responsiveness was determined based on seizure freedom for at least 1 year with AEDs. 2.3.2. Brief Illness Perception Questionnaire (Brief-IPQ) The Brief-IPQ was used to evaluate individual's perceptions toward epilepsy [26]. It consists of 8 items that assess cognitive- and emotionalillness representations, as well as illness comprehensibility. All items are scored on an 11-point Likert scale with endpoint descriptors. Total scores ranged from 0 to 50. Higher scores represent a more threatening view of the illness. Item-9 is a causal item that requires patients to determine three important perceived causes of epilepsy. This item was excluded due to its qualitative nature. The Brief-IPQ has been validated and translated in our local context for participants above age 18 [27]; it was also reported across studies for having strong internal consistency (Cronbach's α = 0.85) [28]. 2.3.3. Hospital Anxiety and Depression Scale (HADS) To detect states of anxiety and depression, the HADS was used [29] as a screening tool for susceptible clinical conditions. It consists of a total of 14 items measuring anxiety (HAD-A) and depression (HAD-D). Each item scores from 0 to 3, with total scores ranged between 0 and 42. A score of 8 or higher indicates the presence possible state of anxiety and/or depression. Both HAD-A and HAD-D share the same cutoff point for borderline (scores of 8 to 10), and clinical (scores of 11 to 21) levels [30]. The HADS was tested in a Malaysian sample, who aged 18 years and above [31]; high internal consistency has been reported for HAD-A (Cronbach's α = 0.88) and HAD-D (Cronbach's α = 0.82) for a community epilepsy sample [32]. 2.3.4. Willingness to participate With an attempt to minimize question-order bias, participant's willingness to engage in psychological interventions was asked prior to describing the types of PPI to elicit individual's preferences. Participants were required to indicate on a scale of 0 (not at all willing to participate) to 10 (extremely willing to participate) on how willing they are to participate in psychological intervention to improve one's coping with epilepsy

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and wellbeing. Based on the midpoint of the scale, a score of 5 and above was used to indicate stronger willingness to participate.

Table 1 Sociodemographic and clinical characteristics of people with epilepsy (n = 154). Demographics

2.3.5. Preferences of PPI A total of nine PP interventions were selected based on previous study [33], systematic review [19], and meta-analysis [16,34]. They were mindfulness-based techniques [8]; character strengths [21]; blessings exercise [35]; gratitude visit [36]; active-constructive responding exercise [37]; forgiveness exercises [38]; creative expressive therapy [19]; savoring exercise [11]; and life summary [11]. A brief description was provided for each intervention. Participants were asked to indicate their level of interest to take part in each intervention on a 6-point Likert scale from 0 (not at all interested) to 5 (extremely interested). Participants who scored 3 and above were described as having stronger interests in the chosen intervention. 2.3.6. Precedence of intervention design The preference of intervention delivery was examined. Participants were asked to indicate their likelihood to attend the intervention that lasts for 30-, 60-, 90-, and 120-minutes per session on a 4-point Likert scale from 0 (definitely won't attend) to 3 (definitely will attend). Likewise, they also indicated their preference for treatment delivery with options namely individual-treatment, group-treatment, and distant delivery on the same 4-point Likert scale. 2.3.7. Perceived barriers in help seeking behavior Potential concerns affecting help-seeking behaviors were examined. Participants were asked to score from 1 (not a barrier) to 3 (significant barrier) on barriers related to the following: service availability, service location, transportation, companionship, fear of being looked down on, fear of other's perceptions, fear that people would be uncomfortable with my diagnosis, and cost of services. An open question was added to explore additional barriers. Items were deemed as potential barriers when respondents scored 2 to 3 on the following scales. 2.4. Analysis Sample size calculation was based on a response distribution of 50% and at 95% confidence interval (i.e., 5% of margin of error), and the recommended sample size is 132. Statistical analyses were conducted using the International Business Machines Statistical Package for the Social Sciences (SPSS) Statistics 19 software. Correlations between participant's characteristics and willingness to participate in psychological intervention were performed using Pearson correlation analysis. Between-subject group factor was analyzed using one-way analysis of variance (ANOVA). Post-hoc analysis was carried out for significant variables. Partial η2 was used to determine effect sizes, with values of 0.01–0.06 (small), 0.06–0.14 (medium), and N 0.14 (large). 3. Results 3.1. Sociodemographic and clinical characteristics A total of 192 participants who met the inclusion criteria were approached, and the recruitment rate was 80.2% (n = 154), comprising 82 females and 72 males with an age range of 16–86 years (mean, 37.29 years; SD, 15.57). Majority were Chinese (42.9%), followed by Indians (29.2%) and Malay (24.7%). Most of them were single (53.9%), currently employed (55.8%), and received education up to secondary level (35.7%) (Table 1). A total of 38 participants refused to take part for the following reasons: survey fatigue, frustration with long-waiting hours, had next medical appointment, and not interested (Fig. 1). Average age of seizure onset was 21 years old (SD, 15.02 years; age range of (0–70). Most participants were diagnosed to have focal epilepsy (68.2%), and 59.1% were drug-resistant. Majority (89.0%) reported no history of psychiatric illnesses (Table 1).

Clinical characteristics Age at seizure onset (years) Duration of disease (years) Seizure types Focal Generalized Undetermined Antiepileptic drug (AED) treatment Monotherapy Polytherapy Not AED Seizure control Drug-responsive Drug-resistant Sociodemographic Age (years) Gender Male Female Ethnicity Malay Chinese Indian Others Marital status Single Married Separated/divorced Widowed Education levels Primary Secondary Diploma/pre-university Undergraduate Postgraduate Others Employment status No Yes History of psychiatric treatment No Yes Willingness to participate in psychological intervention

N

Mean (SD)

(Range)/percentage

20.74 (15.02) (0–70) 17.61 (13.56) (1–57) 105 41 6

68.2 26.6 3.9

94 54 4

61.0 35.1 2.6

60 92

39.0 59.1 38.36 (15.44) (16–80)

72 82

46.8 53.2

38 66 45 5

24.7 42.9 29.2 3.2

83 57 6 8

53.9 37.0 3.9 5.2

4 55 39 37 16 3

2.6 35.7 25.3 24.0 10.4 1.9

68 86

44.2 55.8

137 17 (Median, 6) 5.79 (2.64)

89.0 11.0 (0–10)

3.2. Willingness in participating in psychological interventions Willingness to engage in psychological interventions was asked from 0 (not at all willing to participate) to 10 (extremely willing to participate), mean score for willingness to participate in PPI was 5.79 (SD, 2.64). Majority (71.4%, n = 110) indicated a strong willingness to participate, with a score of 5 or above. Up to 13.6% (n = 21) indicated a score of 9 or 10, indicating a very strong willingness; although 12 respondents (7.8%) had a score of 0 or 1, indicating a very low interest.

3.2.1. Relationship with demographic characteristics There were no statistically significant differences in the scores between most demographic characteristics and individual's willingness to participate in psychological interventions except employment status. Those who were unemployed was significantly more willing to participant in psychological interventions compared with their counterparts with an employment (mean score, 6.26 vs. 5.42, p = 0.048). As time commitment was found to be a significant barrier to participate in psychological treatments (Table 5), we further analyzed its association between employment statuses using chi-square analysis. The results was not significant (p = 0.225).


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Fig. 1. Recruitment flow chart.

With regard to ethnicity, Malays were most willing to participate in psychological interventions, though not statistically significant. Subsequent post-hoc analysis showed a significant difference between Malays (mean, 6.66; SD, 2.33) and non-Malays (mean, 5.51; SD, 2.69); t(152) = 2.36, p = 0.019 (Table 2). 3.2.2. Relationship with clinical characteristics Clinical factors had no significant relationship with individual's willingness to participate in psychological interventions (Tables 2 and 3). 3.2.3. Relationship with psychological factors Scores in illness perception (r = 0.265, p = 0.001) and anxiety scores in HADS (r = 0.277, p = 0.001) were significantly correlated with willingness to participate in PPI (Table 3). Subgroup analysis showed that those with borderline and clinical levels of anxiety were significantly more willing to participate in PPI, compared with those with normal anxiety level (p b 0.01) (Table 2). There was no significant correlation between depression scores in HADS, prior mental health treatment, and willingness to participate in PPI. 3.3. Preferences on psychological interventions for participants who indicated willingness to participate Out of the nine PPI, up to 82.7% (n = 91) indicated a strong interest (score 3 to 5) in character strengths identification; similar number of patients also indicated strong interest in mindfulness-based therapy (80.9%, n = 89) and expressive-based intervention (78.2%, n = 86). Participants were least interested in gratitude visit and savoring intervention, with up to 20.9% (n = 23) and 23.6% (n = 26) indicated a very low level of interest (score 0 or 1) to participate, respectively. A great likelihood to attend (score 2 or 3) was indicated in 82.7% (n = 91) for group format and 78.2% (n = 86) for individual intervention. Despite these favorable returns, 10 (9.1%) and 14 (12.7%) indicated that they will definitely not attend if the intervention was in group format and individual format, respectively. With respect to the length of sessions,

most participants indicated their preference for sessions that last for 30 min (78.2%, n = 86) while 41.8% (n = 46) indicated that they will definitely not attend if the intervention lasts for 120 min. (Table 4). 3.4. Perceived barriers in participation in psychological interventions Significant proportions (N70%) who indicated strong interests to participate in psychological interventions perceived time commitment as a significant barrier. Those who viewed time as a barrier were less willing to participate in psychological interventions compared with those who perceived otherwise (mean score, 5.45 vs. 6.84, p = 0.004). Majority of them (N 60%) did not consider psychological factors and stigma to be a barrier associated with psychological interventions (Table 5). 4. Discussion This study examined the needs and flexibility of psychological intervention from the perspective of PWE. More than half (71.4%) indicated that they would participate in PPI as a means to cope with their epilepsy. Those who were Malay, unemployed, more anxious, and those who possessed a negative illness perception indicated a higher willingness to receive psychological intervention. Participants indicated greatest interest in character strengths, mindfulness-based and expressive-based interventions. While their preference for group versus individual delivery was not obviously different, most of them preferred shorter intervention sessions (30 min) compared with long sessions (120 min). 4.1. Relationship with psychological factors We found that those who had higher negative illness perception and higher anxiety symptoms were more willing to participate in psychological interventions. Leventhal's SRM model has been applied on patients with epilepsy, findings showed that illness perception was a significant predictor of psychological distress [32]. A recent review [39] on the SRM model also suggested that negative illness perceptions

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Table 2 Subgroup differences on their willingness to participate in psychological interventions (N = 154). Measures

Subgroups

Sociodemographic characteristics Gender Male Female Employment Yes No Ethnicity a. Malay b. Chinese c. Indian d. Others Marital status a. Single b. Married c. Separated/divorced d. Widowed Education levels a. Primary b. Secondary c. Diploma/pre-university d. Undergraduate e. Postgraduate f. Others Clinical characteristicsa Seizure types

AED drug use

Seizure control

a. Focal b. Generalized c. Undetermined a. Monotherapy b. Polytherapy c. No AED Drug-responsive Drug-resistant

Psychological characteristicsc History of psychiatric illnesses Yes No Depression a. Normal b. Borderline c. Clinical b a. Normal Anxiety b. Borderline c. Clinical

N

Mean (SD)

p

72 82 86 68 38 66 45 5 83 57 6 8 4 55 39 37 16 3

5.78 (2.77) 5.80 (2.54) 5.42 (2.79) 6.26 (2.38) 6.66 (2.33) 5.26 (2.70) 5.78 (2.73) 6.40 (2.07) 5.65 (2.66) 5.63 (2.56) 7.17 (3.31) 7.38 (2.20) 4.50 (2.65) 5.78 (2.61) 6.13 (2.41) 6.14 (2.49) 5.00 (2.31) 3.33 (2.31)

0.950

105 41 6 94 54 4 60 92

5.91 (2.56) 5.41 (2.82) 5.33 (3.01) 5.79 (2.69) 5.74 (2.56) 5.25 (3.30) 5.27 (2.51) 6.08 (2.69)

0.547

17 137 93 43 18 73 33 48

6.35 (2.64) 0.355 5.72 (2.64) 5.80 (2.90) 0.827 5.65 (2.20) 6.11 (2.30) 5.07 (2.76)⁎⁎ 0.004⁎ 6.64 (2.23) 6.31 (2.47)

0.048⁎ 0.069

0.176

0.284

4.2. Relationship with sociodemographic characteristics

0.923

0.064

⁎ p b 0.05. ⁎⁎ p b 0.01. a Clinical information was not available in two cases. b Tukey HSD (honest significance difference) tests showed that the following pairs were found to be significantly different (p b 0.05): normal and borderline levels (p = 0.011); normal and clinical levels (p = 0.027) of anxiety. c Willingness to engage in psychological interventions was asked from 0 (not at all willing to participate) to 10 (extremely willing to participate).

were statistically associated with poorer health outcomes (e.g., depression severity) and coping (including treatment seeking and medication adherence). Study conducted by Sperling et al. on the relationship of self-perceived seizure precipitants and health locus of control (LOC) postulated that those with higher levels of anxiety might be more apt

Table 3 Correlation between participant's characteristics and willingness to participate in psychological intervention (N = 154). Measure

Willingness to participate in psychological intervention

Clinical characteristics 1. Current age 2. Age of onset 3. Disease duration 4. Numbers of AEDs

0.069 −0.034 0.116 0.062

Psychological factors 5. IPQ 6. Depression 7. Anxiety

0.265⁎⁎ 0.117 0.277⁎

⁎⁎ p b 0.01. ⁎ p b 0.05.

to seek explanations for events that occur beyond their control. Perceived self-control (PSC) was constructed from the concept of LOC. It refers to individual's beliefs of capacities and actions to change one's situation. Studies found that the degree of PSC determines the adoption of health behavioral changes [40]. As illness perceptions are modifiable, this result pointed to important considerations relevant to screening and intervention approaches that aim to reduce suffering in patients with epilepsy with anxiety who are at risk for impaired QOL. Previous study showed help-seeking intentions to be positively correlated with past use of professional help [41]. In our study, the subgroup with previous psychiatric or psychological treatment has higher willingness to participate in psychological intervention than those without. However, the difference was not statistically significant, possibly due to small sample. Nevertheless, Vogel and Wester reasoned that seeking therapeutic help does not equate to subsequent mental health seeking. Rather, quality of previous experiences was an important predictor for willingness to refer self or others for counseling [42].

4.2.1. Employment When compared with those being employed, unemployed individuals showed significantly higher willingness to participate in psychological treatments. The role of a stable employment on wellbeing had long been recognized. The latent deprivation model suggested by Jahoda stated that being employed brought multidimensional satisfaction including the following: time structure, collective purpose, social contact, status, and activity. Lacking of these often cause distress among the unemployed, predisposing them with a greater risk for mental health problems [43]. This additional stress on being unemployed on top of an epilepsy diagnosis might explain their higher needs and willingness to engage in psychological intervention. 4.2.2. Ethnicity The present findings suggested that Malays were more willing to participate in psychological intervention compared with non-Malays. Findings contrasted earlier research that reported Malays of the healthy population was less likely to be opened to seeking psychological help [44,45]. Malays with medical condition might perceive psychological therapy as part of medical treatment, in order to avoid being stigmatized [46]. Although the term ‘mental illness’ carries a negative connotation among the Malays, there is less stigma if people recognize that the affected individuals experienced emotional distress related to a known organic etiology, like epilepsy [46]. The association of stigma and shame with mental illness is a recurring theme in Chinese culture [47]. Chinese culture particularly stresses family ‘prestige’ or pride. This belief discourages them from expressing negative emotions openly, which often lead to avoidance, denial, and suppression of personal problems and emotional sufferings [47]. This cultural belief might have discouraged Chinese individuals from seeking psychological help. 4.3. Relationship with clinical factors Consistent with previous findings [48,49], the present data demonstrated no association between epilepsy-related variables and willingness to participate in psychological interventions. 4.4. Preferences and barriers in PPI participation It was found that participants' preference on the design of interventions were strong predictor on adherence and treatment efficacy [33]. In our findings, participants were most interested in character strengths, mindfulness-based and expressive-based interventions. They preferred interventions to be delivered in a group or individual setting compared with distance delivery, with sessions lasted no more than 30 min.


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Table 4 Preferences in types of PPI, and intervention format (n = 154). Types of positive psychological intervention

Level of interest to participate (n)

Mindfulness-based therapy Character strengths identification Expressive-based Forgiveness therapy intervention Count one's blessings Life summary Gratitude visit Active constructive activity Savoring Intervention format

Mean (SD)

0

1

2

3

4

5

3.50 (1.32) 3.46 (1.31) 3.50 (1.52) 3.22 (1.51) 3.19 (1.38) 3.05 (1.63) 2.89 (1.57) 2.89 (1.49) 2.79 (1.63)

5 5 7 10 6 14 13 12 15

2 4 8 6 7 8 10 7 11

14 10 9 11 16 9 15 18 12

32 35 22 31 34 31 28 33 35

26 28 27 27 25 23 26 24 18

31 28 37 25 22 25 18 16 19

Likelihood to attend (n) Mean (SD)

0

1

2

3

a. Duration of intervention 30 min 60 min 90 min 120 min

2.06 (0.99) 1.96 (0.96) 1.53 (1.10) 1.23 (1.11)

13 12 27 39

11 17 23 25

43 45 35 28

43 36 25 18

b. Delivery method Group Individual Distance delivery

2.08 (0.89) 1.98 (0.97) 1.48 (1.10)

10 14 31

9 10 16

53 50 42

38 36 21

Note. Range for preferences of each positive psychological interventions was [0 (not at all interested) to 5 (extremely interested)]. Duration and delivery methods of intervention was asked in a range of [0 (definitely won't attend) to 3 (definitely will attend)].

Mindfulness-based training [50,51] was originally designed to prevent recurrent depression, and it requires participants to commit to a 2.5-hour group session, and daily 45–60 min of mindfulness practice for 8 weeks. A recent systematic review [52] on mindfulness-based techniques (MBT) for PWE revealed that group face-to-face MBT that lasted for at least 2.5 h per session brought improvement in anxiety, depression, and QOL. Another study conducted among healthy adults showed that short-term meditation (i.e., 1-hour group session, daily 15-minute mindfulness practice) could lead to more tolerance, and a lower distress of pain and perceived stress [53]. The time required for each session described in various mindfulness protocols seemed substantially longer than the preference showed by our participants. Psychoeducation and mental preparation might be necessary before the intervention for participants to understand a long-session design. Since time commitment was one of the major barriers perceived by our participants, future intervention design should balance the concern of participants against the session hours. Our findings suggest that the main barriers were time constraints, costs, and location of mental health services. Krishnaswamy et al. conducted a population-based study on the utilization of healthcare Table 5 Perceived barriers to participation in psychological intervention. Perceived barriersa

Time commitment Availability of services Location of services No transportation No one whom I know accompany me Fear of being looked down on Fear of what relatives and friends might think Fear that people would be uncomfortable with my diagnosis Cost of services

Willing (n = 110)

Unwilling (n = 44)

N

Percentage N

Percentage

78 60 59 56 40 45 39

70.9% 54.5% 53.6% 50.9% 36.4% 40.9% 35.5%

86.4% 52.3% 54.5% 50.0% 47.7% 43.2% 38.6%

38 23 24 22 21 19 17

p

0.004⁎⁎ 0.816 0.988 0.942 0.592 0.592 0.642

49 44.5%

21 47.7%

0.833

73 66.4%

32 72.7%

0.147

⁎⁎ p b 0.01. a Perceived barriers were asked in a range of 1 (not a barrier) to 3 (significant barrier); scores of 2 to 3 indicated barriers to participation in psychological intervention.

services in Malaysia and found that only 30% had contacts with healthcare professionals [54]. Major factors of the underutilization were lacked/unaware of health facilities, had minimal family support during illnesses, and were from the Chinese ethnic group. Another Malaysian study identified significant key barriers like time (i.e., long waiting time, work/study commitments, traveling time), financial constraints, and negative attitude of healthcare providers which contributed to low usage of healthcare services [55]. Taking into the account of perceived barriers, intervention designs and preferences among PWE, it would inform effective recruitment for practitioners to obtain sufficient power, and possibly more representative sample of patients with epilepsy for future psychosocial study. 5. Limitations This study has several limitations. The single-centered design was conducted in the district with predominantly people of Chinese descent and thus has limited generalizability. This study relied exclusively on self-report to assess participant's psychological state, thus, the conclusion drawn were based on subjective accounts only. Since this study was designed to examine the needs and feasibility from users' perspectives, we believed that the results had accurately reflected the subjective intentions of our participants. Nevertheless, open-ended questions or adopting a qualitative design may uncover more information on personal opinions pertaining to intervention designs. With regard to employment status, we are uncertain whether those unemployed are actively seeking employment or not in need of a job, and thus, have more time for psychological intervention. Noting that no other psychological interventions (e.g., cognitive behavioral therapy) were included, future work could conduct comparative study to explore preferences and efficacy between major psychotherapies, this would widen treatment choice for both patients and health professionals. 6. Conclusions This study revealed that majority of PWE was willing to participate in psychological treatment. The results shed light on future trial designs in terms of the types of intervention and the intervention delivery

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methods. This study also found that clinical characteristics were not core variables that would affect an individuals' willing to take part in psychological interventions. Instead, psychological underpinnings, including subjective level of anxiety and illness perception, might help to identify specific group of individuals with epilepsy who were in need of psychological interventions.

Appendix B. Supplementary data Supplementary data to this article can be found online at https://doi. org/10.1016/j.yebeh.2017.12.019.

References Author contributions ST and KS conceived the project. ST, KS, WY, and VT designed the survey questionnaire. ST, VT, and KS carried out the analysis. ST drafted manuscript. All authors reviewed and revised the manuscript. All authors approved the final manuscript. Funding This study is supported by University of Malaya Postgraduate Research Grant (PG039-2016A). Conflict of interest There is no conflict of interest. Appendix A A.1. Descriptions of positive psychological interventions Mindfulness-based techniques. Techniques involved meditation, consolidating body awareness, cultivation of acceptance, and nonjudgmental attitude. Common beneficial findings include reduced depression and anxiety, as well as increase in attention span. Character strengths. Personal strengths and talents could be discovered and taught to incorporate in daily activities. The application of signature strengths has led to increase in personal discovery and reduced depressive symptoms. Blessings exercise. This count-one's-blessings exercise requires individuals to ponder, reflect, and reason on three good things that went well at the end of each day. Reflecting on grateful moments have shown to increase positive emotions and wellbeing. Gratitude visit. This activity teaches individuals to write a gratitude testimonial to someone whom they have never properly thanked. Previous studies reported this exercise showed heightened sense of happiness, altruism, and gratefulness toward recipients. Active-constructive responding exercise. An active-constructive response includes authentic happiness and enthusiasm via responding to the sharing of good news, or visualizing one's best possible state. Positive event disclosure was shown to improve relationships and life satisfaction. Forgiveness exercises. This activity guides participants to define forgiveness, grieve for unresolved/hurtful events, reframe the situation, and explore empathy. Forgiving thoughts were found to prompt greater perceived control and lowered physiological stress responses. Creative expressive therapy. Various modalities such as music, drawing, poetry, or dance aimed to allow participants to explore the mind–body interaction. Those who participated reported enhancement in self-awareness and problem solving orientation. Savoring exercise. This exercise was included in Seligman's positive psychotherapy. It teaches participants to cultivate and prolong the positive emotions associated with the experience through focused attention on the present moment. Life summary. Included in the handbook of positive psychotherapy, this activity helps to develop essential narrative skills based on one's past successes/meaningful events. Part of the review requires oneself to notice what was missing in life and what changes might be required.

[1] Räty LKA, Söderfeldt BA, Wilde Larsson BM. Daily life in epilepsy: patients' experiences described by emotions. Epilepsy Behav 2007;10:389–96. [2] Jones JE, Hermann BP, Barry JJ, Gilliam FG, Kanner AM, Meador KJ. Rates and risk factors for suicide, suicidal ideation, and suicide attempts in chronic epilepsy. Epilepsy Behav 2003;4(Suppl. 3):S31–8. [3] Lah S, Castles A, Smith ML. Reading in children with temporal lobe epilepsy: a systematic review. Epilepsy Behav 2017;68:84–94. [4] Varekamp I, Verbeek JH, van Dijk FJ. How can we help employees with chronic diseases to stay at work? A review of interventions aimed at job retention and based on an empowerment perspective. Int Arch Occup Environ Health 2006;80: 87–97. [5] Rizou I, De Gucht V, Papavasiliou A, Maes S. Evaluation of a self-regulation based psycho-educational pilot intervention targeting children and adolescents with epilepsy in Greece. Seizure 2017;50:137–43. [6] Macrodimitris S, Wershler J, Hatfield M, Hamilton K, Backs-Dermott B, Mothersill K, et al. Group cognitive-behavioral therapy for patients with epilepsy and comorbid depression and anxiety. Epilepsy Behav 2011;20:83–8. [7] Dilorio C, Henry M. Self-management in persons with epilepsy. J Neurosci Nurs 1995;27:338–43. [8] Tang V, Poon WS, Kwan P. Mindfulness-based therapy for drug-resistant epilepsy. Neurology 2015;85:1100–7. [9] Thompson NJ, Patel AH, Selwa LM, Stoll SC, Begley CE, Johnson EK, et al. Expanding the efficacy of project UPLIFT: distance delivery of mindfulness-based depression prevention to people with epilepsy. J Consult Clin Psychol 2015;83:304–13. [10] Thompson NJ, Walker ER, Obolensky N, Winning A, Barmon C, DiIorio C, et al. Distance delivery of mindfulness-based cognitive therapy for depression: project UPLIFT. Epilepsy Behav 2010;19:247–54. [11] Seligman ME, Rashid T, Parks AC. Positive psychotherapy. Am Psychol 2006;61: 774–88. [12] Michaelis R, Tang V, Wagner JL, Modi AC, LaFrance Jr WC, Goldstein LH, et al. Psychological treatments for people with epilepsy. Cochrane Database Syst Rev 2017;10:Cd012081. [13] Eaton RJ, Bradley G, Morrissey S. Positive predispositions, quality of life and chronic illness. Psychol Health Med 2014;19:473–89. [14] Kotwas I, McGonigal A, Trebuchon A, Bastien-Toniazzo M, Nagai Y, Bartolomei F, et al. Self-control of epileptic seizures by nonpharmacological strategies. Epilepsy Behav 2016;55:157–64. [15] Leventhal H, Diefenbach M, Leventhal EA. Illness cognition: using common sense to understand treatment adherence and affect cognition interactions. Cogn Ther Res 1992;16:143–63. [16] Sin NL, Lyubomirsky S. Enhancing well-being and alleviating depressive symptoms with positive psychology interventions: a practice-friendly meta-analysis. J Clin Psychol 2009;65:467–87. [17] Huffman JC, DuBois CM, Millstein RA, Celano CM, Wexler D. Positive psychological interventions for patients with type 2 diabetes: rationale, theoretical model, and intervention development. J Diabetes Res 2015;2015:428349. [18] Huffman JC, Mastromauro CA, Boehm JK, Seabrook R, Fricchione GL, Denninger JW, et al. Development of a positive psychology intervention for patients with acute cardiovascular disease. Heart Int 2011;6:e14. [19] Casellas-Grau A, Font A, Vives J. Positive psychology interventions in breast cancer. A systematic review. Psychooncology 2014;23:9–19. [20] Emmons RA, McCullough ME. Counting blessings versus burdens: an experimental investigation of gratitude and subjective well-being in daily life. J Pers Soc Psychol 2003;84:377–89. [21] Andrewes HE, Walker V, O'Neill B. Exploring the use of positive psychology interventions in brain injury survivors with challenging behaviour. Brain Inj 2014;28: 965–71. [22] Wells RE, Burch R, Paulsen RH, Wayne PM, Houle TT, Loder E. Meditation for migraines: a pilot randomized controlled trial. Headache 2014;54:1484–95. [23] Lundgren T, Dahl J, Melin L, Kies B. Evaluation of acceptance and commitment therapy for drug refractory epilepsy: a randomized controlled trial in South Africa—a pilot study. Epilepsia 2006;47:2173–9. [24] Lundgren T, Dahl J, Hayes SC. Evaluation of mediators of change in the treatment of epilepsy with acceptance and commitment therapy. J Behav Med 2008;31:225–35. [25] Ryan RM, Deci EL. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol 2000;55:68–78. [26] Broadbent E, Petrie KJ, Main J, Weinman J. The brief illness perception questionnaire. J Psychosom Res 2006;60:631–7. [27] Norfazilah A, Samuel A, Law P, Ainaa A, Nurul A, Syahnaz MH, et al. Illness perception among hypertensive patients in primary care centre UKMMC. Malays Fam Physician 2013;8:19–25. [28] Broadbent E, Wilkes C, Koschwanez H, Weinman J, Norton S, Petrie KJ. A systematic review and meta-analysis of the Brief Illness Perception Questionnaire. Psychol Health 2015;30:1361–85. [29] Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361–70.

S.-T. Lai et al. / Epilepsy & Behavior 80 (2018) 90–97 [30] Hashim Z. Reliability and Validatidity of Hospital Anxiety and Depression Scale (HADS) on breast cancer survivors: Malaysia case study. Asia Pac Environ Occup Health J 2016;2. [31] Kaur S, Zainal NZ, Low WY, Ramasamy R, Sidhu JS. Factor Structure of Hospital Anxiety and Depression Scale in Malaysian patients with coronary artery disease. Asia Pac J Public Health 2015;27:450–60. [32] Goldstein LH, Holland L, Soteriou H, Mellers JD. Illness representations, coping styles and mood in adults with epilepsy. Epilepsy Res 2005;67:1–11. [33] Schueller SM. Preferences for positive psychology exercises. J Posit Psychol 2010;5: 192–203. [34] Bolier L, Haverman M, Westerhof GJ, Riper H, Smit F, Bohlmeijer E. Positive psychology interventions: a meta-analysis of randomized controlled studies. BMC Public Health 2013;13:1–20. [35] Lai ST, O'Carroll RE. ‘The Three Good Things’ - the effects of gratitude practice on wellbeing: a randomised controlled trial. Health Psychol Update 2017;26:10–8. [36] Wood AM, Froh JJ, Geraghty AW. Gratitude and well-being: a review and theoretical integration. Clin Psychol Rev 2010;30:890–905. [37] Gable SL, Gonzaga GC, Strachman A. Will you be there for me when things go right? Supportive responses to positive event disclosures. J Pers Soc Psychol 2006;91: 904–17. [38] vanOyen Witvliet C, Ludwig TE, Vander Laan KL. Granting forgiveness or harboring grudges: implications for emotion, physiology, and health. Psychol Sci 2001;12: 117–23. [39] Baines T, Wittkowski A. A systematic review of the literature exploring illness perceptions in mental health utilising the self-regulation model. J Clin Psychol Med Settings 2013;20:263–74. [40] Sperling MR, Schilling CA, Glosser D, Tracy JI, Asadi-Pooya AA. Self-perception of seizure precipitants and their relation to anxiety level, depression, and health locus of control in epilepsy. Seizure 2008;17:302–7. [41] Mackenzie CS, Gekoski WL, Knox VJ. Age, gender, and the underutilization of mental health services: the influence of help-seeking attitudes. Aging Ment Health 2006;10: 574–82. [42] Vogel DL, Wester SR. To seek help or not to seek help: the risks of self-disclosure. J Couns Psychol 2003;50:351–61.

97

[43] Jahoda M. Impact of unemployment in the 1930s and the 1970s. Bull Br Psychol Soc 1979;32:309–14. [44] Edman JL, Koon TY. Mental illness beliefs in Malaysia: ethnic and intergenerational comparisons. Int J Soc Psychiatry 2000;46:101–9. [45] Picco L, Abdin E, Chong SA, Pang S, Shafie S, Chua BY, et al. Attitudes toward seeking professional psychological help: factor structure and socio-demographic predictors. Front Psychol 2016;7. [46] Razak AA. Cultural construction of psychiatric illness in Malaysia. Malays J Med Sci 2017;24:1–5. [47] Blignault I, Ponzio V, Rong Y, Eisenbruch M. A qualitative study of barriers to mental health services utilisation among migrants from mainland China in south-east Sydney. Int J Soc Psychiatry 2008;54:180–90. [48] Roeder R, Roeder K, Asano E, Chugani HT. Depression and mental health helpseeking behaviors in a predominantly African American population of children and adolescents with epilepsy. Epilepsia 2009;50:1943–52. [49] Oguz A, Kurul S, Dirik E. Relationship of epilepsy-related factors to anxiety and depression scores in epileptic children. J Child Neurol 2002;17:37–40. [50] Shapiro SL. The integration of mindfulness and psychology. J Clin Psychol 2009;65: 555–60. [51] Kabat-Zinn J, Lipworth L, Burney R. The clinical use of mindfulness meditation for the self-regulation of chronic pain. J Behav Med 1985;8:163–90. [52] Wood K, Lawrence M, Jani B, Simpson R, Mercer SW. Mindfulness-based interventions in epilepsy: a systematic review. BMC Neurol 2017;17:52. [53] Pots WT, Meulenbeek PA, Veehof MM, Klungers J, Bohlmeijer ET. The efficacy of mindfulness-based cognitive therapy as a public mental health intervention for adults with mild to moderate depressive symptomatology: a randomized controlled trial. PLoS One 2014;9:e109789. [54] Krishnaswamy S, Subramaniam K, Low WY, Aziz JA, Indran T, Ramachandran P, et al. Factors contributing to utilization of health care services in Malaysia: a populationbased study. Asia Pac J Public Health 2009;21:442–50. [55] Ghafari M, Shamsuddin K, Amiri M. Barriers to utilization of health services: perception of postsecondary school Malaysian urban youth. Int J Prev Med 2014;5:805–6.