Improving management of posttraumatic epilepsy following brain injury: a psychoeducational program

Michelle L. Bellon, PhD & Roger J. Rees, PhD

Disability Studies Flinders Clinical Effectiveness
School of Medicine
Flinders University
Adelaide, Australia

Purpose

This study examines the effects of a six-month psychoeducational intervention program on psychosocial and cognitive functioning of 16 people with posttraumatic epilepsy (PTE). Methods: Participants were assigned to an intervention group through self-selection (n=8), with a matched, no-treatment control group for comparison (n=8). The intervention program focused on (a) educating participants about their PTE, (b) introducing skill-building exercises and relaxation training, and (c) building social networks with ongoing support. Data were collected through medical and psychological records, interviews, participant observations, diary recordings, and use of questionnaires measuring psychosocial and cognitive functioning (Washington Psychosocial Seizure Inventory, Perceived Wellness Survey and San Diego Questionnaire). Questionnaires were completed independently by participants and a nominated significant other. Data collection occurred at baseline, post-intervention, and at six-month follow-up. Results: Results indicated improved levels of self-awareness by intervention participants, which was not sustained at six-month follow-up. For the control group, established views and behaviours persisted over time with no improvement. Conclusions: The study indicates that a psychoeducational intervention designed for people with brain injury can improve self-awareness and understanding of PTE, and reduce social isolation, such that seizures are better managed, participation in community activities are established, and the rehabilitation process enhanced.

Introduction

Posttraumatic epilepsy (PTE) is a secondary and, in many cases, delayed complication of acquired brain injury (ABI), affecting long term rehabilitation outcome and educational, vocational and personal achievement. The dual diagnosis of ABI and epilepsy adds a dimension that, for many, leads to complex challenges for rehabilitation and effective re-entry into community life (Bellon, 2005).

Posttraumatic epilepsy is defined as recurrent late seizures, not due to any obvious cause other than the brain injury (Yablon, 1996). These seizures create exhaustion, self-doubt, high levels of stress, and social withdrawal. The experience of epilepsy is not only characterized by seizures, but influences all areas of an individual's life. Educational, vocational, social and personal achievement is impacted to varying degrees, with the shadow of stigma a continuous presence (Baker, Brooks, Buck & Jacoby, 1999). Living with stigma becomes a fact of life, fuelling discrimination and isolation (Hills & MacKenzie, 2002). Coupled with the difficulties associated with ABI, this combination has far reaching consequences on a person's psychosocial and cognitive functioning (Armstrong, Sahgal, Block, Armstrong, & Heinemann, 1990).

It is well reported that psychosocial problems associated with epilepsy are often more disabling than seizures themselves (Dodrill & Batzel, 1994). Emotional difficulties seen in this population frequently include anxiety, depression, poor self-esteem, withdrawal from society, and subsequent inability to relate appropriately with others (Helgeson, Mittan, Tan & Chayasirisobhon, 1990). Regardless of the degree of seizure control, fear and uncertainty about the individual's epilepsy may always be present.

Cognitive functioning may also be compromised, not only by the original brain injury itself, but also through the effects of ongoing seizure activity and medications (Schwartz & Marsh, 2000). Difficulties in cognition commonly experienced by people with ABI include poor concentration, attention, memory, word finding, reading, information processing, and executive functioning (Abetz, Jacoby, Baker & McNulty, 2000; Kushner, 1998; van der Naalt, van Zomeren, Sluiter & Minderoud, 1999). In addition, impaired mental performance as a result of medication is listed as one of the most common adverse effects. The injured brain's response to anticonvulsant drugs is such that toxic effects could be more pronounced, with neurological recovery delayed (Schierhout & Roberts, 1998). Difficulties in cognitive functioning often compromise safety, life skills, vocational opportunities, social perceptiveness and the ability to effectively respond in interpersonal situations (Dodrill, 1986; Kushner, 1998).

In order to best combat these difficulties, optimum seizure control, close monitoring, positive rehabilitation experiences and social support help ensure a person's quality of life. Establishing and maintaining quality of life restores confidence, independence and life satisfaction (Man, Tam & Li, 2003; Stephen & Brodie, 2000). Appropriate seizure management minimises socioeconomic costs, both to the individual and the community, ensuring maximum opportunities for individuals to further their rehabilitation and participate in their community.

It is well documented that anticonvulsant drugs, the treatment of choice in western societies, have unusually narrow therapeutic margins, and well-documented toxicity. Between 30-60 per cent of people with epilepsy do not achieve control of their seizures with medication, and side effects are a significant problem (Blum, 1998). In response to these concerns, non-pharmacological approaches in the management of epilepsy have emerged. Such strategies are ideally used in partnership with anticonvulsant treatment to improve seizure management. These include cognitive behavioral therapy (Au et al., 2003; Ramaratnam et al, 2003; Goldstein et al, 2003; Spector, Tranah, Cull & Goldstein, 1999; Tan & Bruni, 1986), psychotherapy (Miller, 1994), avoidance of triggers (Thompson & Baxendale, 1996), self-abatement of seizures (Fenwick, 1992; Wolf, 2002; Spector, Cull & Goldstein, 2000; Buelow, 2000; Szupera et al, 1995), relaxation (Dahl, Melin & Lund, 1987; Puskarich et al, 1992; Rousseau, Hermann & Whitmann, 1985; Whitman et al, 1990), fatigue management (Malow & Vaughn, 2002), diet (Swink et al, 2003; Levy & Cooper, 2003; Maydell et al, 2001; Sirven et al, 1999), exercise (McAuley et al, 2001; Nakken, 1999), and group epilepsy education (Spector et al, 1999; Helde et al, 2003; May & Pfafflin, 2002; Hausman et al, 1996) .

Psychoeducational techniques have received considerable attention over the past 30 years. In the context of brain injury rehabilitation, the underlying principles of increasing knowledge and reducing stigma should play an important role in the rehabilitation and education of people with PTE. A range of psychoeducational interventions exist for people with epilepsy (Thompson & Baxendale, 1996). However, none achieve the sensitivity required, nor address the unique issues associated with learning following acquired brain injury. To date, the tailoring of these techniques to the brain injury population have not been documented. The design and implementation of such an intervention involves flexibility and adaptation. The program must take into consideration issues associated with brain injury such as difficulties in communication, memory, self-awareness, planning, sequencing, initiating, maintaining, problem solving, monitoring behavior, distractibility, fatigue and denial of own difficulties (Rees, 2005; Sohlberg & Mateer, 2001).

In a study by Mazzini, Cossa, Angelino, Campini, Pastore and Monaco (2003), PTE is reported to have a negative influence on rehabilitation following ABI, associated with worse functional outcome and social reintegration at one year post trauma when compared to people with brain injury without epilepsy. The need for increased attention to the management of this issue is imperative. As such, the development of a psychoeducational intervention designed for people with PTE in the community rehabilitation setting has been considered a priority.

Aim

To examine the effects of a psychoeducational intervention program on PTE participants' measured perceptions of psychosocial and cognitive functioning, and identify management and intervention practices for the community rehabilitation setting.

Methods

Ethical approval was granted by the Flinders University Social and Behavioural Research Ethics Committee and the Royal Adelaide Hospital Research Ethics Committee. Informed consent for participation was received from each participant.

Participants

Individuals who satisfied selection criteria (Table 1) were informed of the study, and invited to participate. Participants were involved in rehabilitation programs for people with ABI, affiliated with epilepsy associations, or independently approached by their rehabilitation consultant/doctor who provided information about the study and invited them to participate.

Participants were assigned to the intervention group through self-selection (n=8), with a matched no-treatment control group established for valid comparison (n=8). Each participant nominated a significant other, defined as a family member or friend who could provide information regarding the participant's skills and talents, as well as their difficulties.

Table 1 Subject Selection

Intervention

The key feature of this project was the design and implementation of a psychoeducational intervention program specifically for people with PTE following brain injury. The intervention was a six-month program, focusing on educating participants about their PTE, introducing skill-building exercises to manage psychosocial and physical difficulties, and provision of sustained social support. The contents of these workshops are detailed in Table 2. The eight participants assigned to the intervention group participated in weekly two-hour social and psychoeducational skill development workshops over a six-month period. This intervention was both individualized and group based with a focus on participants' effective management of their epilepsy, and associated participation in community social and recreational activities. The participant's nominated significant other was invited to attend, to provide motivation and support for the participant.

Table 2 Posttraumatic Epilepsy Workshops

A summary of psychoeducational and social methods is detailed below.

a. Medical and Educational Information about PTE

Workshops included general information about brain injury and epilepsy, medication, identifying seizure triggers, learning how to avoid seizures and interrupt them in the early stages of occurrence (e.g., through the use of specific movements or mental activities, Fenwick, 1992), lifestyle changes, attitudes, and the opportunity to share experiences. Similar studies have reported this information giving process to significantly reduce fear of seizures in people with epilepsy (Helgeson, Mittan, & Chayasirisobhon, 1990).

b. Skill Building

Skill building exercises were explored to improve participants' use of cognitive-behavioral techniques in managing depression and anxiety associated with PTE. Techniques included:

• increasing opportunities for rewarding social and recreational activities,
• increasing physical exercise,
• increasing assertiveness,
• identifying self-talk and belief systems,
• self monitoring and thought stopping, and
• increasing opportunities for rewarding cognitive experiences such as effective problem solving (e.g., coping and self-reinforcing statements).

Research by Davis, Armstrong, Donovan and Temkin (1984) has demonstrated that cognitive-behavioral interventions could significantly decrease depression, and improve related areas of psychosocial functioning, over time.

c. Relaxation Training

Workshops teaching progressive muscular relaxation, meditation, yoga, massage, and tai chi were included in the program. Each of these techniques were aimed at relieving stress and tension - frequently reported as precursors of seizures (Whitman, Dell, Legion, Eibhlyn, & Statsinger, 1990) The techniques used are considered to have improved sleep, lessened aggravation and tension during the day, improved feelings of control, and reduced fear of seizures, indicating an overall greater sense of wellbeing (Rosseau et al., 1985).

d. Managing depression

The theme for explaining depression and helping participants manage this condition centered on the exploration that depression is not a mysterious illness which descends on a person, but rather it is something which people create and which they can dismantle (Rowe, 2003).

e. Social Support

Participants were involved in an ongoing social support program to assist in adjustment and promote psychosocial development (Ownsworth, McFarland & Young, 2000; Jones, 1998; Tyerman, 1997). Activities were recreationally and socially oriented (e.g., cafŽ visits, and group outings), with benefits including feedback and social support from others, as well as learning more effective coping strategies, self-regulation, motivation and awareness (Droge, Arntson & Norton, 1986). In addition, individualized support from mentors enhanced this process, linking participants to facilitate social support over the six-month period.

Workshops were characterized by being: (a) non-invasive, (b) inexpensive, (c) easily supported and complimentary to other rehabilitation programs, and (d) used terminology that was shared and understood. Each of these approaches imply that the responsibility is on the participant to take an active role and responsibility in the program, sharing information, using role reversal, and developing dialog and strategies for openness.

A folder/workbook containing each session's reading material, discussion questions and notepaper was brought to every workshop and supplemented by information/resources participants brought to share. The completed folders then formed each participant's own resource on PTE. Participants brought information/resources of their own to the sessions, such as articles, videos, and books, and were encouraged to role-reverse and become the teacher/facilitator. This format acted as a springboard for a variety of different issues, and introduced flexibility in discussion of topics. On occasions, the group suggested the workshops be held in different locations. This included cafŽs and parks in their local communities, which brought a more relaxed and informal atmosphere to the workshops. Informality is perceived as a non-threatening strategy which improves motivation and enhances openness. In this way, the workshops evolved to include opportunities for structured learning, as well as interacting in a more social context in natural environments.

Professionals from psychology, education and complementary therapies were recruited to provide specialist workshops (e.g., managing depression, massage, Tai Chi, and Yoga). In addition, participation and mentor support by postgraduate students added to the diversity and value of this program.

Data collection

Information on all participants was gathered from the following sources:

• medical records and documentation of pre-intervention measures
• informal interviews
• participant observation
• seizure diaries
• questionnaires completed by participants and their nominated significant other:
  • Perceived Wellness Survey (PWS) (Adams, Bezzner & Steinhardt, 1997)
  • Washington Psychosocial Seizure Inventory (WPSI) (Dodrill, Batzel, Queisser & Temkin, 1980)
  • San Diego Questionnaire (SDQ) (Allen & Ruff, 1990).

a. Perceived Wellness Survey

The Perceived Wellness Survey (PWS) measures wellness perception in relation to functional independence in people with ABI. A scale measuring health perceptions is considered both important and relevant to this study, as quality of life as a perceptual or subjective measure is now an important outcome of medical care, and used as an indicator of the effectiveness of rehabilitation (Bezner & Hunter, 2001). However, it has been suggested that due to difficulties with lowered self-awareness as a result of attention, memory and logical thinking difficulties, (or even exaggeration or simulation of difficulties where compensation settlements are pending), people with ABI are unable to reliably complete self-report instruments (Hillier & Metzer, 1997). The PWS was included because people with ABI can provide valuable information that contributes to the understanding of their experience, and it is therefore important to consider each person's ability to provide self-report information individually (Allen & Ruff, 1990; Bergquist, Boll, Corrigan, Harley, Malec & Millis, 1994; Pain, Dunn, Anderson, Darrah & Kratochvil, 1998).

The PWS instrument contains 36 items, with six sub-scales of physical resilience, psychological optimism, emotional centeredness, intellectual stimulation, spiritual life purpose, and social connectedness. Responses to the questions are given on a 6-point likert scale, ranging from very strongly disagree (1) to very strongly agree (6). Scores range from 3 to 29 with higher scores indicating greater 'wellness'.

b. Washington Psychosocial Seizure Inventory (WPSI)

The WPSI is an epilepsy-specific inventory, containing 132 items in a yes/no format. This is a well-known psychosocial inventory for people with epilepsy of its kind, and is documented and published in over 70 studies worldwide. The WPSI provides standardised findings that approximate those that would be gathered from a detailed professional evaluation (Swinkels, Shackleton & Kasteleijn-Nolst Trenite, 2000). Each item is answered according to the usual feelings and actions of the respondent. Areas covered include family background, emotional adjustment, vocational adjustment, financial status, adjustment to seizures, medicine and medical management, and overall psychosocial functioning. This questionnaire contains three validity scales; number of unanswered questions, lie scale and rare items scale.

Areas for specific investigation include; psychiatric issues (e.g., depression and anxiety), isolation, dependency, relationships, roles and responsibilities, employment and education, social activities, self-perception, future plans, financial adjustment, stigma, fears and aggression. Typically 15 to 20 minutes is required for completion of the WPSI, however further time may be required.

Higher scores indicate greater psychosocial difficulty, with four profile levels indicated: (1) no significant problems, (2) possible problems, but of limited significance (3), distinct difficulties, with definite adjustmental significance, and (4) severe problems having a striking impact upon adjustment.

c. San Diego Questionnaire

The San Diego questionnaire is an instrument assessing people's self-ratings of cognitive functioning. The questionnaire consists of 29 items, measuring six aspects of cognitive function (7 sensorimotor, 2 attention, 2 mathematics, 7 language and intelligence, 6 learning and memory, and 5 reasoning). Responses are recorded on a Likert scale, ranging from severe problem (1) to definite strength (7). The overall score falls between 29 and 203, with lower scores indicating greater cognitive difficulty.

Reliability can be tested using Cronbachs alpha for internal consistency. By using an item-to-item correlation, the score must be greater than 0.80 for sufficient reliability. Construct validity can be tested with factor analysis.

The questionnaires were to be kept as short as possible in order to minimise fatigue and loss of motivation (Duncan, Shorvon & Trimble, 1990). All multi-item scales are constructed and scored using Likert-summated ratings. Advantages of this method include its simplicity, as well as providing results that are reproducible without compromising the internal consistency, reliability or validity of the scale.

Data Collection Points

Researchers met with each participant and their nominated significant other prior to commencement of the study at 01 (see Figure 1). The participant wishing to be involved in the study was informed of the aims and purpose of the research, the nature of their involvement, how the data will be used, and their right to withdraw from the study at any time. If agreed to, an informed consent form was then signed. A semi-structured informal interview was held with the participant and their 'significant other', with further information gathered through participant observation and collation of diagnostic and demographic information.

At the second data collection point (02), the researcher demonstrated how to complete the questionnaires, and answered any questions that may be raised. The questionnaires were completed by the participant and the significant other independently. In some cases it was necessary to clarify where items were misunderstood, as well as to debrief and ensure issues raised in the questionnaires did not upset or concern participants.

New questionnaires were presented to the participant and significant other following a 6 month intervention period (03), and again after a 6 month follow-up (04). This provided three data collection points (see Figure 1). Researchers were available at all stages of the study to answer questions, provide feedback, and respond to any concerns.

Figure 1 Time line of data collection

Results

Table 3 presents the demographic and diagnostic data for both intervention and control groups. Psychosocial and cognitive questionnaire results are presented in Table 4a and b, and Figures 2-4, illustrate perceptions of participants' abilities by both the participant and significant other at pre and post intervention.

Table 3 Demographic & diagnostic data for intervention and control group

(* = Severe range)
(** = Moderate disability, work at a lower level of performance)

Table 4a Mean scores (and standard deviations) of intervention group participants and significant others on questionnaires at the three evaluation times

PWS: Perceived Wellness Scale; ps, psychological optimism; ec, emotional centredness; sc, social connectedness; pr, physical resilience; sp, spiritual purpose; is, intellectual stimulation; wm, wellness magnitude; WPSI: Washington Psychosocial Seizure Inventory; fb, family background; ea, emotional adjustment; ia, interpersonal adjustment; va, vocational adjustment; fs, financial status; as, adjustment to seizures; mm, medical management; of, overall functioning; SDQ: San Diego Questionnaire (cognition); s, sensorimotor; a, attention; m, mathematics; li, language and intelligence; lm, language and memory; r, reasoning; om, overall mean.

Table 4b Mean scores (and standard deviations) of control group participants and significant others on questionnaires at two evaluation times.

PWS: Perceived Wellness Scale; ps, psychological optimism; ec, emotional centredness; sc, social connectedness; pr, physical resilience; sp, spiritual purpose; is, intellectual stimulation; wm, wellness magnitude; WPSI: Washington Psychosocial Seizure Inventory; fb, family background; ea, emotional adjustment; ia, interpersonal adjustment; va, vocational adjustment; fs, financial status; as, adjustment to seizures; mm, medical management; of, overall functioning; SDQ: San Diego Questionnaire (cognition); s, sensorimotor; a, attention; m, mathematics; li, language and intelligence; lm, language and memory; r, reasoning; om, overall mean.

Case Study

The following case study was selected to illustrate the effects of ABI on insight and self-awareness, and highlight the features and effects of the PTE workshops for one participant

Adam is a 54 year old man who was injured in a motorbike accident at age 23. He sustained severe left-hemisphere brain injuries with an 8 week coma and GCS of 5. Long term difficulties include poor social awareness and judgment, anger outbursts, and diagnosed posttraumatic epilepsy 15 years post-trauma.

Following rehabilitation, Adam was employed in a variety of different industrial positions. However, due to his seizures, Adam lost his driver's license 6 years before the study, subsequently losing his job. At commencement of the study, he was unemployed. His social contacts were very limited, restricted to his ex-mother-in-law who he calls his 'best friend', and his daughter, who he visits one evening a week. Adam attended monthly epilepsy support group meetings, yet despite routine involvement in this group, had not made significant friendships. This may be due to his difficulties in judgment, self-monitoring and ability to provide rewarding social feedback.

At the beginning of the study, Adam experienced approximately one generalised tonic clonic seizure per month at different times of the day, with no apparent pattern. He reported no warnings before each seizure. Adam also experienced occasional complex partial seizures, lasting a couple of minutes. Adam has tried many different anticonvulsant medications, with limited success. The side effects were intolerable for him, and he made the decision to discontinue his medication without medical supervision. These were replaced with a variety of alternative complementary approaches, including natural herbal remedies.

Despite his uncontrolled seizures, transport was not a problem for him, as he confidently used his bicycle, buses and trains. However, at times Adam occasionally had seizures while on public transport or on his bike, which have caused him much embarrassment, confusion and distress.

Intervention period

Adam was very motivated and attended all workshops promptly and reliably. Each week, he brought information about brain injury and epilepsy from home to share with the group, and openly told of his experiences of seizures. In particular, Adam was very passionate in sharing his views on AEDs and the negative effects he has experienced.

Due to some perseveration, Adam tended to repeat his thoughts and ideas on epilepsy each week. He would clarify his understanding of epilepsy and seizures, explaining how they occur, without noticing other participants' loss of patience in hearing his ideas repeated. Adam would also engage in explanations where he would describe theories and historical facts he had heard on TV which were at times inaccurate. These interactions were one-sided, as he was unable to see another side to the argument. Adam would impatiently wait till one person stopped speaking, then launch on an unrelated subject he was waiting to share. He failed to interact with people, and talked at them. This made social interactions uncomfortable for other participants, and they tended to avoid speaking or responding to him.

Poor self-awareness was a key area of concern. In discussions about dealing with stress, Adam stated:

"Epilepsy is the biggest disaster to happen to me. I can't be employed because I might have a seizure at any time. I'm not able to do anything. I'm bored - what the hell am I going to do?"

However, when discussing sources of stress later in that workshop, Adam was unable to think of any area in his life where he experienced stress. He stated:

"I accept the way things are-- I'm just normal. I don't get depressed. I haven't really worried about anything. I accept things as they are. I don't worry."

Other than monthly support group meetings, the PTE workshops were the only social activities Adam engaged in during the week. He participated fully in all workshop activities and discussions, and seemed to benefit from the relaxation exercises. Adam developed a friendly relationship with another participant who was interested in listening to his stories. Workshops were also an opportunity to raise issues of concern in other areas of his life, and he received feedback on issues such as financial risk, and overseas lottery 'scams'.

Adam continued to experience monthly complex partial and tonic clonic seizures with no known triggers. He didn't experience seizures on the days of the PTE workshops. He changed natural remedies over this time, replacing lecithin with sunflower seeds and garlic. Adam rationalised these remedies by stating "They haven't stopped the seizures, but they're not as bad as when I was on the drugs."

Over this time, reports from Adam's social worker and members of his other epilepsy support group began mentioning a change in Adam's behaviour. His interactions were less aggressive; he would listen respectfully to others' opinions and no longer try to 'dominate' the floor when speaking. Adam routinely reported back to the support group information he had learned from the PTE workshops. This improvement in social behaviour is a positive reflection of developed social and personal awareness.

At the end of the intervention period, plans were put in place to involve Adam in a 'drop-in' style woodwork program for adults with ABI in his local area. Further information was provided regarding work opportunities at a nearby workshop. It was hoped that these opportunities would be maximized, and contribute to reducing his isolation, boredom and increase chances to develop friendships and meaningful daily activities.

The PTE workshops played an important role in providing Adam with the opportunity to discuss issues concerning epilepsy, and 'sound out' his ideas and understandings with others. However, an equally important effect was the structure, support and routine that weekly workshops provided. Adam thrived in an environment where he could talk with others with a similar experience, discuss concerns, and get feedback. In addition to receiving support is the buoying feeling of providing support to others, using your experience to help those in need. This role reversal is a key feature of support groups, and demonstrated to be effective in the PTE workshops.

Nonparametric Data Analysis

Nonparametric statistics apply when a normal distribution cannot be assumed (Weiss, 1999). Since this study deals with small sample sizes in both the intervention and control groups (n=8), a variety of non-parametric statistics were employed. Advantages of these methods are that they are resistant to outliers and extreme values that may become an issue in such a small population, although with the disadvantage that accuracy and power are sacrificed when compared to the use of parametric statistics (Weiss, 1999; Siegel & Castellan, 1988).

In this study, the null hypothesis is that the independent variable (intervention) will have no impact on the dependent variables of seizure frequency, seizure type, and perceptions of psychosocial functioning and cognitive levels of the participant's with PTE. Questionnaire results were analysed using various non-parametric statistics, allowing comparison between (a) intervention and control groups over time from pre-intervention to the 6-month follow-up at data collection points 02, 03 and 04 and (b) differences between perceptions of participants and their significant other over time.

Kruskal-Wallis Test

This test can be used as a non-parametric alternative to ANOVA when the distributions of the variable have the same shape, but are not required to be normal. Additional assumptions include that samples are independent and sizes number 5 or greater (Weiss, 1999). The Kruskal-Wallis Test was used to indicate whether the difference between the means of two or more groups exposed to different experimental treatments (intervention and control) was significant. For this study, a significance level of <0.05 for a one-tailed test was required.

Friedman 2-Way Analysis of Variance by Ranks

This test can be used to test the null hypothesis that three or more matched samples (of at least ordinal data) have been drawn from the same sample (Siegel & Castellan, 1988). Questionnaire results from participants and then their significant other in the intervention group were analysed to determine what differences, if any, were present over the three data collection periods (baseline, post-intervention and follow-up) for each group (participant and significant other). A significance level of <0.05 was required.

Wilcoxon Test for Matched Pairs: Repeated Measures Design

This test provides a method of determining whether a significant difference exists between the medians of two related samples of data, and therefore whether the data are likely to come from the same or different populations (Dyer, 1995). This method is used in this study to determine any treatment program effects from baseline to follow-up. In order to use the Wilcoxon test, the following requirements were satisfied:

• data is on at least the ordinal scale
• data is from two related sets of scores in a repeated measures design
• testing for a significant difference between the medians of two sets of scores in order to determine if there is any significant change over the specified period.
• symmetrical distribution.

A one-tailed test was appropriate, with a significance level of <0.05 required.

Mann-Whitney U-test

The Mann-Whitney U-test is similar to the Wilcoxon test described above, but is used to determine whether two independent groups come from the same population (Siegal & Castellan, 1988). This test was chosen to evaluate two independent samples (participant and significant other perceptions) to determine if they differ and to what extent. Again, a one-tailed test was appropriate, with a significance level of <0.05.

Pearson Product-Moment Correlation Coefficient

An important part of this research is to examine the relationship between different variables. Accordingly, the Pearson Product-Moment Correlation Coefficient was calculated to determine the extent of covariation between (a) seizure type, (b) seizure frequency, (c) PWS results, (d) WPSI results, and (e) SDQ questionnaire results for both intervention and control groups. The significance of correlation and the development of response curve over time were determined. The aim was to measure if the correlation coefficient score reached significance at the p=0.05 or p=0.01 significance level.

It is important to note that the small population sizes in this study limit the scope of statistical analysis. All computations are included, accompanied by an analysis of trends to supplement this design.

Figure 2 Perceived Wellness Survey

Perceived Wellness Survey*

PWS Statistical analysis

Statistically significant differences were noted at the 0.05 level as calculated using the Mann-Whitney U-test (Siegal & Castellan, 1988) between the following PWS group scores:

• perceptions of overall wellness by significant others in the control group from pre-intervention to post-intervention (Table 5). This group reported a small, but statistically meaningful decrease in perceived wellness over time, indicating that participants in the control group did in fact experience slightly poorer wellbeing by the end of the study.
• perceptions of overall wellness between participants and significant others in the intervention group at pre-intervention, and again at post-intervention (Table 5). These two groups differ both graphically and statistically, with strength given to the argument that participants' level of self-awareness is an issue when completing self-report questionnaires. However, unlike the WPSI, an adjustment in perceived wellness can not be seen following the intervention, with differences maintained over time.
• perceptions of overall wellness between participant and significant others in the control group at post-intervention (Table 5). The difference observed between these two groups is significant, and indicates a similar trend to the intervention group.

Table 5 Statistical analysis using Mann-Whitney U-Test

*U= test statistic. This value must be less than 15 to reject the null hypothesis

** The null hypothesis can be rejected for a one-tailed test at the 0.05 significance level

Key
P= Participant
SO = Significant other
Cont = Control group

Figure 3 Washington Psychosocial Seizure Inventory

WPSI Statistical analysis

Statistically significant differences were noted at the 0.05 level between the following WPSI group scores:

• overall psychosocial functioning results by participants in the intervention and control groups at pre-intervention as calculated using the Kruskal-Wallis test (Weiss, 1999) (Table 6). This indicates that the two groups are indeed different, and discussions comparing the two should be undertaken with this in mind.
• participant perceptions of overall psychosocial functioning in the intervention group from pre-intervention to post-intervention as calculated using the Wilcoxon test for matched pairs (Dyer, 1995) (Table 7). This finding facilitates the discussion that the psychoeducatoinal intervention program changed participants' perceptions, improving their self-awareness and thus paving the first step towards improved management of PTE.
• overall psychosocial functioning between participants and significant others in the intervention group at pre-intervention as calculated using the Mann-Whitney U-test (Siegal & Castellan, 1988) (Table 5). The key to interpreting this finding is to look where there were no significant differences in perception. It can therefore be seen that following the intervention, participants adjusted their perceptions, identifying more psychosocial difficulties, with results similar to their significant other. The link to improved self-awareness is central to this interpretation.

Table 6 Statistical analysis using Kruskal-Wallis Test

* H= test statistic. This value must be above 3.841 to reject the null hypothesis
** The null hypothesis can be rejected for a one-tailed test at the 0.05 significance level

Key
P= Participant
Int = Intervention group
Cont = Control group

Table 7 Statistical analysis using Wilcoxon Test for Matched Pairs: Repeated Measures Design

		T* value
Overall Results		Participant	Significant Other
WPSI	Int at 02 & 03	5**	11
	Int at 03 & 04	6	7
	Cont at 02 & 03	9	10
PWS	Int at 02 & 03	10.5	9
	Int at 03 & 04	8.5	14
	Cont at 02 & 03	6	1**
SDQ	Int at 02 & 03	8	7

* T= test statistic.
** The null hypothesis can be rejected for a one-tailed test at the 0.05 significance level

Figure 4 San Diego Questionnaire

SDQ Statistical analysis

Statistically significant differences were noted at the 0.05 level between the following SDQ group scores:

• perceptions of overall cognitive functioning results by significant others in the intervention group over the three data collection points (02, 03 & 04) as calculated using the Friedman two-way analysis of variance by ranks (Siegel & Castellan, 1988) (Table 8). This slight but gradual change reflects an improvement in perception over time, indicating that 'those who know them well' noted positive changes in participants' overall cognitive abilities, possibly as a result of the routine stimulation and interaction initiated by the intervention program.
• perceptions of overall cognitive functioning in the intervention group from post-intervention to follow-up as calculated using the Wilcoxon test for matched pairs (Dyer, 1995) (Table 7). This demonstrates a significant change to pre-intervention levels following the six-month follow-up, indicating that without sustained feedback, realistic self-appraisal is not maintained. However, this change also coincides with higher perceptions by significant others, raising the question that perhaps a slight improvement in overall cognitive ability was made.

Table 8 Statistical analysis using Friedman Two-Way Analysis of Variance by Ranks

Scores from intervention group at pre-intervention (02), post-intervention (03) and follow-up (04)

Fr* value

Overall Results	Participation	Significant Other
WPSI	2.25	0.44
PWS	0.44	0.75
SDQ	2.25	6.25**

* Fr= test statistic. This value must be above 6.25 to reject the null hypothesis

** The null hypothesis can be rejected for a one-tailed test at the 0.05 significance level indicating that a significant difference exists between overall scores over the three data collection points

Seizure Frequency

Five out of eight participants in the intervention group did not experience any seizure activity over the period of the study. This is not surprising considering that each of these participants experience seizures less than or equal to once a year. Their anticonvulsant medication was therapeutic. Only one participant reported a change in seizure frequency. Following her involvement in the intervention program, and a change in medication documented in her case study, her seizures reduced from daily to weekly. This reduction was maintained by the six-month follow-up. No changes in seizure frequency were reported by participants in the control group.

Seizure Type

Two changes were reported by participants in the control group. One control participant continued to experience simple partial seizures daily, however by the second round of data collection (03) he and his wife noticed the complete absence of complex partial and generalized seizures. This good news was attributed to his change in lifestyle with the commencement of a new job and routine daily activity, which were previously lacking. A second change was noted in another control participant. Over the six-month period (03) he did not experience further generalized seizures. Although his simple and complex partial seizures continued monthly, it is considered that his new system of prompts, cues and routine lifestyle played a role in improving medication compliance, avoiding known seizure triggers, and minimizing seizures. Both these cases highlight the importance of structure, routine and positive forward planning in the management of seizures in people with brain injury. This has a carry-over effect to medication compliance, minimizing the risk of further seizure activity, as well as improving a person's sense of control.

Summary of Quantitative Results

A major finding was that perceptions of psychosocial and cognitive functioning differed between participants and their significant other. In all questionnaires, participants identified fewer difficulties across each area than reported by their significant other. This reflects low levels of self-awareness and insight by participants, highlighting the importance of including assessments from 'those that know them well' (Fisher, Gauggel & Treklen, 2004).

Over time, participants in the intervention group illustrated an improvement in their self-assessment, reporting scores in psychosocial and cognitive functioning that more closely approximated perceptions by their significant other. Fischer, Gauggel & Trexler (2004) advise that discrepancies between rating perspectives of people with brain injury and relatives can be considered an indicator of impaired awareness. This trend was not seen in the control group. This led to the conclusion that involvement in the psychoeducational intervention program succeeded in improving participants self-awareness and insight to a level that was comparable to perceptions by their significant other.

Discussion

Quantitative results indicate two common themes. The first is that participants with PTE tended to report fewer psychosocial and cognitive difficulties than their significant other. Issues such as language skills and intelligence, reasoning, emotional and interpersonal adjustment, financial status, adjustment to seizures, medicine and medical management, social connectedness and spiritual purpose are areas that are perceived very differently. The discrepancies between perceptions of psychosocial and cognitive functioning by people with PTE and their significant other illustrate a low level of self-awareness commonly seen following ABI (Hillier & Metzer, 1997).

A 63-item European Brain Injury Questionnaire completed by people with ABI, close relatives and controls revealed similar findings (Martin, Viguier, Deloche, & Dellatolas, 2001). In their study, relatives scored higher than patients in items of identified 'depressive mood', 'cognitive difficulties', and 'difficulties in social interactions', illustrating the level to which participants with ABI under-report difficulties due to poor self-awareness, or seeking to present themselves in a more capable light. As such, the importance of collecting information from people who know the individual well is highlighted. Through the comparison of findings, a measure of reliability can be achieved.

Researchers and society at large perceive that the 'significant other' can provide information and a level of insight that is not provided by the person with PTE (Minnes, Carlson, Mccoll et al 2003). However, such a belief often overlooks the following:

• the significant other is often a carer without extensive knowledge of epilepsy, brain injury and issues such as mental illness and behavioural difficulties
• the significant other is often a nominated person who is separate from and devoid of sustained contact with the person with PTE. This further compounds the issue of isolation, and suggests an isolation index could be appropriately used in such a study. The fact that the significant other nominated was separated geographically and personally on a day-to-day basis is testament to the isolation of the person with PTE
• Some research indicates that family perceptions as measured on awareness ratings do not change, even when the family member with brain injury's self-awareness had improved (Sohlberg, Mateer, Penkman, Glang & Todis, 1998).

In cases where the significant other is genuinely involved with the person with PTE, their closeness, frequency of contact and significant knowledge of the individual builds an important foundation for support. These significant others play an important role in the management of PTE, providing an anchor, motivation, and bridge into the wider community.

Providing support, education, and respite for significant others is essential in their ongoing struggle to cope with the difficulties associated with management of people with brain injury and epilepsy. When the support and rhythm provided by significant others is not available, the individual with PTE becomes more vulnerable to poor self-awareness, isolation and the development of risk-taking behaviours. Each of these issues is a significant concern, and form priorities in any discussion of management of PTE.

The second trend concerns changes in perceptions between participants with PTE and their significant other over time. Participants' mean scores indicated that following the intervention, perceptions were moderated and more closely approximated those recorded by their significant other. By the six month follow-up, this change was maintained in some instances, but reverted back to pre-intervention levels in others. This effect illustrates that participation in the six-month intervention program changed participants' perceptions of their psychosocial and cognitive functioning, improving their self-awareness. On the other hand, results indicate that the intervention did not influence significant others' perceptions of participants' psychosocial and cognitive functioning over time. Their consistent reports illustrate that although psychosocial and cognitive abilities were not measurably enhanced, perceptions by participants themselves became more realistic as they 'dropped' to correlate more strongly with reports by their significant other.

Benefits of Participation in Weekly Intervention Workshops

Through weekly discussions about the effects of epilepsy and brain injury, participants appeared to adjust the way they interacted with others in the group, developed outside contacts, and spoke with more freedom and confidence about the management of their PTE. Participants appeared to benefit from being involved in the psychoeducational workshops by gaining a sense of meaning and empowerment. Folkman (1997) reported that finding meaning in life is associated with positive health and mental health status, with meaninglessness correlated with pathological outcomes.

Developments of routine, structure and plans for the week are essential in compensating for loss following PTE. The program provided; a sense of purpose and direction for participants, opportunities to assist others, and provided a valued role in the group. This valued role is described as someone who actively listens, empathises, and can provide suggestions and helpful strategies for solving problems. Supporting others, in addition to receiving support, is an important issue highlighted by this research. Through role reversal, providing advice, providing information and giving a sympathetic ear, this support is in turn a therapeutic strategy, turning the participant into the helper rather than always the helpee. One participant's desire to meet others with a similar brain injury and resultant epilepsy is indicative of the need to be a helper/therapist rather than a passive helpee. For her, the chance to 'connect with others with similar experiences' and share her story was keenly expressed.

A number of strategies used throughout workshops were observed as beneficial by participants. These are presented in Table 9 below.

Table 9 Workshop Strategies

One statement characterises the benefits of weekly participation in the psychoeducational workshops by people with PTE:

"I've never talked about epilepsy to others before. It's good to talk and listen to others. I was afraid to let it out - feel like a fool. Others feel you're stupid. It's like you've got to hide - not let others know. I feel really guilty [about my epilepsy]. You don't want to talk to others about it. You feel really weird. Weirder than normalÉ These workshops have taught me - helped me not to be ashamed of my epilepsy - to talk about it with other people."

Changes in self-awareness

Lack of awareness of difficulties is a significant obstacle to successful rehabilitation, and often associated with poor self-monitoring, self-regulation and social cognition (Stuss & Levine, 2002). Low levels of self-awareness can negatively influence rehabilitation outcome, as participants do not acknowledge changes in their functioning, appreciate the need for treatment, or set realistic goals (Fischer et al, 2004; Ghika-Schmid & Bogousslavsky, 2000; Sohlberg et al., 1998). Poor self-awareness, over-estimation and denial are similarly often associated with bipolar disorder, in particular associated hypermanic behaviour. A number of participants involved in both the intervention and control group experienced hypermanic behaviours and self-denial, with statements and beliefs such as "I am cured of my brain injury/epilepsy". These are dangerous over-estimations, equivalent to a lack of reality, and indicative of a severe if not chronic misperception. These misperceptions are often more powerful in influencing their lifestyle than the brain injury and epilepsy itself.

Many participants entered the intervention period with a highly defensive approach and behaviours, high levels of isolation and depression, compromised cognitive functioning, and indifferent seizure management. Through the intervention, participants were encouraged to think about their thought processes and behaviours. Issues concerning how they interact with others, find support and other social opportunities were raised. An improvement in self-awareness resulted, as seen through the questionnaire results. Table 10 presents reasons for demonstrated improvement in self-awareness by participants in the intervention group.

Table 10 Improvements in self-awareness by participants

The psychoeducational intervention provided a sense of purpose, meaning, activity, and positive focus. Without a positive focus, the participants with PTE tended to lose direction and fall back in to periods of depression, isolation, and self-delusional behaviour. Facilitating greater openness to affective and cognitive stimuli requires strategies to help manage this newfound awareness. Evidence indicates that higher awareness of difficulties following closed head injury is often accompanied by emotional distress (Gasquoine, 1992). As such, the support required following improvements in self-awareness includes ongoing counselling, and positive forward planning.

Factors which influence the success of the intervention

The following features were observed to influence participant engagement in, and benefits gained through the intervention program:

(a) Safe environment

According to Diller and Ben-Yishay (2003), the setting is the most important part of treatment. It must be safe, regulated and predictable in order to encourage openness and acceptance of difficulties, and encourage non-defensive interaction. "A major problem for people who sustain severe disabilities is that of no longer feeling 'helpful'" (Diller & Ben-Yishay, 2003, p298). Through creating a supportive and open environment, the setting can provide opportunities for participants to act helpfully to each other. By interacting in helpful ways and developing mutual trust, participants can develop effective strategies to deal with complex issues. An accepting environment is particularly reinforcing, and takes time to generate. As a rule, many people with brain injury and epilepsy do not often find acceptance. Rejection leads to stress, which further places them at risk of depressive behaviours and ultimately further isolation.

Rewards and a sense of belonging to a group are powerful. While transport in itself is an important factor (particularly when motivation and personal resources are limited), it is marginal in comparison to the influence of a sense of belonging. An example of this concept is Adam's involvement in every workshop, regardless of his geographical distance, reliance on two forms of public transport and risk of generalised seizures in public.

(b) Structure and routine in workshops

Holding workshops at set times, in a set location, and with a set pattern provided a level of structure and routine to which the participants responded well (Rees, 2005). Participants knew 'what to expect next', and could anticipate the events. Any change to this routine was kept to a minimum.

(c) Support networks

The development of support networks is crucial to the success of such an intervention. Over time, the instructor, mentors and participants with PTE form a support network where participants feel safe in an accepting environment where questions are encouraged and respect and dignity upheld. In this study, these support networks involved participation in activities such as providing transport (participants/mentors/instructor who provided transport for others who relied on buses/trains/taxis), social events (such as lunches, visiting participants in their home), and acting in advocacy roles (assisting in talks with potential employers, linking participants into new activities in the community).

(d) Opportunity to communicate change, verbally and in writing

During workshops, participants had the opportunity to share personal experiences by talking with the group, and writing down events/feelings/behaviours in their workbook. At times, this included examples of successful interactions with family members, neighbours, and strangers with whom they had negative experiences in the past. Other examples include sharing how they were able to 'interrupt a seizure' by changing their behaviour, or a shift in perception about their PTE. This process turns a concept into something much more concrete.

(e) Being a valued group member whose contributions are valued

A person-centered therapy approach was adopted in the workshops. The instructor aimed to develop genuine regard through empathy, in order to facilitate awareness, development of self-concept, an internal locus of evaluation (less dependent on others for their values and standards), and a shift to a more open and flexible mode of experiencing self and the world (Raskin & Rogers, 1995). Communication with others plays an important role in developing awareness and decreasing stigma. A similar study looking at psychoeducational techniques in epilepsy reported that interactive aspects of the program were important in providing opportunities to discuss issues and support emotional adaptation (May & Pfafflin, 2002). Workshops aimed to use this information in order to increase a sense of mastery and control, reduce concern and worry over seizures and other issues, improve self-esteem, reduce anxiety and helplessness (Amir et. al., 1999).

Barriers to Successful Involvement in Workshops

According to Umphred, Byl, Lazaro, and Roller (2001), barriers to successful involvement in rehabilitation programs include: the person is unconvinced that the treatment will be successful; lack of motivation allied with lack of experience of rewards for compliant behaviour; and neurological damage resulting in cognitive difficulties, emotional lability and poor motivation lead to difficulties in participating in meaningful, goal-directed, positively rewarding behaviour.

Observations of participants with PTE in this study revealed a number of issues that limited successful involvement in the program:

(a) Fatigue

A number of statements by participants with PTE illustrate the effects and causes of fatigue in this population.

• "I'm tired all the time - I don't feel alert because of the drugs."
• "I get tired very easily because I take so many drugs"
• "I know that I'm at times a bit slow or dopey. But I don't know if that's a cause of the drug or if it's the head injury effects. I don't know. I suspect some part of it must be partly from the drugs."

Fatigue as a result of AEDs has the potential to limit the participation and benefits gained from rehabilitation and social activities. Feeling 'tired', 'sluggish', 'slow' and 'dopey' restricts ability to attend to stimuli, respond appropriately, and interact with others in a positively rewarding way. Similarly, memory and recall are affected, limiting the individual's ability to store new information and link previously learnt data to current discussions (Rees, 2005). The issue of fatigue should be kept in mind with people with brain injury, and particularly those with PTE. Intervention sessions should be kept short, with breaks and chances to rest between sessions.

(b) Transport

Isolation due to lack of transport is a common problem for many participants. Transport issues are heightened in the PTE population as many have lost driving licences due to uncontrolled seizures. Difficulties with executive functioning (e.g., planning), motivation and memory all contribute to exacerbate the problem. People with PTE living with carers who provide regular transport may still be isolated by lack of transport options. As stated by one participant's mother: "I find it hard to get (participant) to these kinds of things (workshops) because I work". An effective community based rehabilitation program must address these issues, to ensure participants are able to get there. It is the role of the mentor to support the use of public transport if appropriate, or organize a transport roster/bus.

(c) Discrimination and stigma towards disability

Discrimination was observed as being seen as 'one of them'. One participant chose not to socialise or spend time with others with a disability which limited his opportunity to participate and benefit from the intervention group. This can be interpreted as a desire to be seen as 'further down the road of recovery', and unease with any association or labelling as 'one of them'. This discrimination has strong links to stigma, with a need to place distance between himself and what he saw as the label of disability.

(d) Depressive behaviours

Feelings of depression were reported due to; disappearance of friends, family members and support, loss of previous life, independence and roles, reliance on long term medications, and inability to find and sustain meaningful employment. The following statements illustrate these feelings:

• "I get frustrated and depressed when I can't hear conversations."
• "Being alone causes depression."
• "Epilepsy is the biggest disaster to happen to me. I can't be employed because I might have a seizure at any time. I'm not able to do anything. I'm bored. What the hell am I going to do?"
• "This [PTE] is the biggest curse I've been under for all my life."
• "I've just been so depressed. I've not been seeing anyone."
• "It's been a hell on earth. Another trip to hell!"

Depression and anxiety are common co-morbidities identified in the epilepsy literature, which are commonly under-recognised and under-treated (Gilliam & Kanner, 2002; Piazzini, Canevini, Maggiori & Canger, 2001). As addressed by Sohlberg and Mateer (1998), depression and anxiety are similarly common effects of ABI. Difficulties in these areas often result from cognitive impairments and losses, which further erode cognitive abilities, decreasing motivation and contributing to hopelessness, despair, and isolation. Over time, these patterns of mood state and behaviour limit personal and social adjustment with negative implications for community reintegration.

(e) Memory difficulties

Difficulties in memory are common following generalized lesions (Winkler, 2001). These difficulties have been observed to be further augmented by (a) ongoing experience of seizures and (b) the effects of AEDs in this population. Of particular concern in regards to management of PTE is that memory difficulties adversely affect consistent medication compliance (forgetting when the last tablet was taken and over/under-dosing), maintenance of a healthy diet (forgetting to eat routine meals to assist with maintaining medication blood levels), and attendance at medical/rehabilitation appointments and social events. These issues are more of a concern for individuals who live alone, without routine carers or family to assist with prompting. For such a population, the presence of a holistic community rehabilitation program, which works as a team to ensure regular routine reminders and involves the person in routine activities, is imperative to ensure the individual does not 'slip through the cracks'.

(f) Stress

Stress can have significant inhibitory effects on response and rehabilitation (Jackson, 2001). The relationship between stress and seizures has been documented by a number of researchers (Haut, Vouyiouklis & Shinnar, 2003; Neufeld, Sadeh, Cohn & Korezyn, 1994; Temkin & Davis, 1984). In cases where a person has difficulty with stressful situations (e.g., lifestyle changes following ABI, loss of significant relationships, frustration and anger etc), stress can act as a seizure precipitant. As one participant identified "You get so damned mentally stressed that you can't sleep", stress and fatigue work together to create a potential seizure trigger. It is important to note that rehabilitation must identify the type, number and severity of the individual's stressors, and thereby identify who is at greatest risk of psychological and emotional exhaustion. As with the elderly population, people with dual diagnosis of PTE, with numerous psychosocial and disability concerns, are at considerable risk of such exhaustion, with the potential to trigger further seizures and associated psychopathology (Jackson, 2001). Jackson continues to state that "any action that modifies stress so that a deterioration of intellectual function is stopped or reversed is an efficient and cost-effective part of the total rehabilitation effort." (p797).

Adjustment to disability

The stress and coping model presented by Lazarus and Folkman (1984) is particularly relevant to the issue of management of posttraumatic epilepsy. A key concept of this theory is that the individual's judgment of the stressor, together with his or her coping resources and strategies dictate, how the person will respond. This has been applied in Green's study of adjustment to prostate cancer (2003), demonstrating that distress and concerns frequently corresponded more closely to appraisal and coping, than to medical variables such as stage of cancer. People with ABI may become increasingly anxious or depressed as a result of the threat and restrictions posed on their lives by the disability (Dawson & Chipman, 1995; Morton & Wehman, 1995). When the additional restrictions associated with epilepsy are added, adjustment may take considerable time. This process can be aided through group and individual psychoeducational programs, in the context of a holistic community rehabilitation model.

However, observing the impact and role of such a program demonstrates that interventions need to be sustained. The six-month program of psychoeducational workshops revealed an improvement in self-awareness of psychosocial and cognitive abilities by participants with PTE. However, as demonstrated by the questionnaire results, these improvements are not sustained unless the intervention is maintained. Group support must be ongoing, and provided in a variety of different forms that are appropriate to the individual. As time passes, these needs change, and must be reflected in the nature of the support provided. Examples include changes in daily activities (eg commencement/loss of work), change in seizure activity (eg increased seizure frequency or new seizure type), change in mood state (eg depression/mania/buoyancy), and changes in support structure (eg loss of family support or development of new relationships).

Recommendations for Effective Management of PTE

This study has highlighted the following key elements for effective management of PTE in the community rehabilitation setting:

Psychoeducational approaches

• available ongoing psychoeducational workshops that provide opportunities for mutual support, sharing and education both individually and in groups
• appropriate counselling to facilitate communication, address issues of self-awareness and denial, establish a reality based understanding of self and events, explore options, and plan for positive future events
• education and support to achieve a positive lifestyle which includes appropriate diet, regular exercise and sleeping patterns, routine medication compliance, planned social activities, and pre-vocational opportunities.

Social support

• nominating, planning and negotiating the development of a wide social network to provide support (including family, mentors, neighbours, rehabilitation/ medical professionals, employers)
• planned social and recreational activities on a weekly, if not daily basis, which reduce isolation, verify the person and contribute to the development of positive self-esteem.

Professional support

• sustained regular contact with professionals and mentors who are well informed of the risks that people with PTE face, along with advocacy of interventions that can improve management of PTE
• regular appointments with the general practitioner and neurologist to check the effectiveness of medications. Regular appointments need to be part of a person's accepted lifestyle so that difficulties (e.g., recurrent seizures that become overwhelming, hypermanic behaviours, substance abuse, non-epileptic seizures) can be anticipated and forestalled
• creating opportunities for active involvement in pre-vocational/vocational activities in order to gain skills and increase self-esteem, develop social networks, facilitate community integration, and reduce the strain and burn-out of care givers.

Problem-solving

• modelling of constructive problem solving in relation to the therapeutic management of PTE. This involves close and functional contact with significant persons (e.g., the mentor, chemist, GP, employer) to solve priority issues such as medication compliance and lifestyle patterns
• acknowledgment and understanding of changes following PTE. This includes developing a long term view of emotional mood change by learning to cope with the highs as well as the lows.
• modelling and encouraging personal flexibility which is aided by helping people with PTE to be more open than defensive.

Limitations of Study

Evaluation of this research indicates the following limitations.

• Participant numbers (n=8 in intervention and n=8 in control group) are, through the nature of the study, relatively small. The sample size in this study was chosen to allow for individual case work and qualitative data collection and analysis. In order to facilitate effective use of parametric statistics in future studies, each group population size would need to increase to at least 20 participants.
• The six-month intervention period was selected to facilitate ongoing weekly participation, and accommodate the time constraints of a three year research study. In any future replication of this study, further detailed results would be possible in a study of longer duration, such as an intervention sustained over one year.
• A range of different types of PTE, including aetiology of brain injury, seizure type and seizure frequency were gathered from the 16 participants. Use of a wider sample would provide a greater range of variables, and potentially reveal important trends and issues regarding effective individual management.
• Small studies of this type create the potential for bias. The possibility that participants with particular characteristics volunteered or were referred to this study cannot be excluded. Thus, the research findings should be interpreted with this caveat in mind.
• Generalisation of findings need to be treated carefully in view of the sample size.
• Difficulties in communication, memory and self-awareness have the potential to limit the ability of the participant with PTE to accurately identify, record and report seizure activity and its effects. In this population, communicating details regarding their seizure type and frequency represents a significant problem. In turn, these problems can lead to difficulties in diagnosis and ongoing management of epilepsy for the medical profession. In 'real world' conditions without the presence of diagnostic equipment such as EEG monitoring, identification of seizure activity can often be inaccurate. This study has identified cases where seizures may have been 'missed' due to memory difficulties (inability to remember events due to organic brain damage or post-ictal confusion), difficulty describing the seizure (again due to communication difficulties associated with the brain injury or epilepsy), and inability to identify or link an event or behaviour with seizure activity (e.g., recognise simple partial seizures).
• The question must be raised as to whether the results from the intervention group are due to the treatment effect. In order to establish this in future studies, multiple testing prior to intervention would ensure that self-reporting was stable and accurate prior to treatment. However, asking people with PTE to complete multiple questionnaires at baseline to ensure reliable data is often considered impractical and unnecessarily time consuming (Wilson, 1997).
• Was the intervention group just responding to the increased attention? This issue of the Hawthorne effect (Grbich, 1999) is one that must always be considered, particularly in a group that has been historically and geographically isolated and excluded. An alternative approach would be to involve the control group in a social program, and the treatment group in the combined social and educational program in order to determine whether the results follow from the educational program alone. This was not possible for this study. Difficulty in recruiting participants for a control group meant that there was a wide geographical spread of volunteers. Participants lived in Queensland, New South Wales, Victoria and South Australia, restricting the feasibility of group work.

Conclusion

This study highlights the positive effects of sustained, routine involvement in a psychoeducational program adapted for people with brain injury in facilitating effective management of PTE. Such a program can be used in a variety of settings including rehabilitation programs, epilepsy support groups, and community education. Findings indicate that isolation and lack of understanding and support are key areas of concern that place many people with PTE at risk of poor management, continued seizures, and reduced opportunities in rehabilitation and community reintegration.

PTE is a serious complication of acquired brain injury, affecting long-term rehabilitation outcome, and educational, vocational and personal achievement (Armstrong et al, 1990; Hernandez & Naritoku, 1997). Developing personal, educational and vocational skills alongside effective management of PTE requires careful nurturing of participants allied to sensitivity to their needs. This builds self-awareness and confidence such that seizures are better managed, participation in community activities is established, and the rehabilitation process is enhanced. Optimum seizure control, close monitoring and continuous social support helps to ensure the highest quality of life for people with PTE, restoring confidence and independence (Stephen & Brodie, 2000).

Significant outcomes of this study include the identification of distinct features of seizure management, and evaluation of intervention practices for the community rehabilitation setting. This program can be used in a variety of settings, including rehabilitation programs, epilepsy support groups and community education.

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Acknowledgements:

This research was conducted during the tenure of a research scholarship from the Epilepsy Association, Australia. Support also gratefully received from the Community Re-entry Program, Brain Injury Association of NSW, Epilepsy Association of South Australia and Northern Territory, and Epilepsy Australia

Contributors:

Michelle L Bellon, PhD & Roger J Rees, PhD
Disability Studies Flinders Clinical Effectiveness
School of Medicine
Flinders University, Adelaide, Australia

Email: Michelle.Bellon@flinders.edu.au http://som.flinders.edu.au/FUSA/disabstud/
Phone: (08) 8201 3645
Fax: (08) 8201 3646

International Journal of Disability, Community & Rehabilitation
Volume 8, No. 1
www.ijdcr.ca
ISSN 1703-3381