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Perceived family reactions and quality of life of adults with epilepsy.

Abstract: This study examined the perceived family reactions and the quality of life in adults with epilepsy in Harare, Zimbabwe. Perceived family reactions refers to behaviors that occur in response to epilepsy. Roy's Adaptation Model was used to conceptualize quality of life in the physiologic, self-concept, interdependence, and role-function modes. Face-to-face interviews were conducted on a convenience sample of 66 adults ages 18-45 years. A three-part structured interview schedule was used to describe demographic data, quality of life (using a modification of the disease-specific Quality of Life in Epilepsy 89 [QOLIE-89] instrument), and perceived family reactions. Quality of life was not adversely affected in the physiologic, self-concept, and interdependence modes but was affected in the role-function mode. Family reactions were positively correlated with the quality of life (r = .39, p = < .01). The effect of the independent variable, perceived family reactions ([R.sup.2] = .15345, F = 11.60132, p = <.01), explained 15% of the variance in quality of life. Adults with epilepsy were uncertain about their families' reactions, such as overprotection, but felt accepted and supported by their families. Fear, isolation of the individual secrecy, and concealment were negative strategies used by families and individuals to manage epilepsy. Roy's Adaptation Model was used to identify family reactions as significant and positively correlated to the quality of life of adults with epilepsy. To enhance the quality of life in adults with epilepsy, nurses need to encourage positive family reactions such as openness, acceptance, and support, while discouraging fear, isolation of the individual, secrecy, concealment, and overprotection.

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Managing a chronic illness involves more than managing medical problems (Smeltzer & Bare, 1996). It also entails managing psychological and social considerations, identity adjustments, role changes, and altered body image or lifestyle. All require physical, social, and emotional adaptations for both the patient and the family. Nurses can fulfill their roles as educator, counselor, and patient advocate by helping patients and families gain insight into the effects of a chronic illness such as epilepsy. Providing relevant information leads to a greater sense of power and control, which are necessary for self-management and optimal quality of life.

Epilepsy is a chronic condition characterized by uncertainty It affects more than 50 million people worldwide and is an important public health problem (World Health Organization, 2004). Some studies in developing countries suggest the prevalence of epilepsy to be more than 10 per 1,000 (World Health Organization, 2001). In Zimbabwe, a country in southern Africa, available estimates show the prevalence at 1%-2% (Epilepsy Support Foundation of Zimbabwe, 1990).

Quality of life may suffer because of the social consequences of epilepsy, which may include active discrimination in employment, reduced participation in community and civic activities, stigma, problems in family relationships. The need for long-term medication to control seizures can create financial burdens, side effects of drugs can disrupt physical and social functioning, and frequent clinic visits can interfere with normal routines (Hartshorn & Byers, 1994; Kleinman et al., 1995; Matuja & Rwiza, 1994). Negative family reactions may be detrimental to the quality of life of adults with epilepsy (Levin, Banks, & Berg, 1988). No other condition has been so carefully concealed within families (Phipps, Sands, & Marek, 1999). Devlieger, Piachaud, Leung, and George (1994) found that the ability to communicate with family members helped to relieve stress and enhanced positive feelings about oneself. Hartshorn and Byers reported that adults with epilepsy would like to be treated as normal people in an open, caring, and accepting environment in which seizures are talked about openly.

In Zimbabwe, very little has been documented regarding the relationship of perceived family reactions and the quality of life of adults with epilepsy. Quality of life has been approached from a medical-sociological perspective rather than from a nursing perspective. The purpose of this descriptive correlational study was to examine and describe the relationship of perceived family reactions and the quality of life of adults with epilepsy. The preferences of clients and families noted in this study may guide nurses toward developing strategies for enhancing the quality of life of adults living with epilepsy.

Literature Review

The lack of a clear conceptual definition of quality of life (Bertero & Ek, 1993; Farquhar, 1995; Holmes, 1989; Katz, 1987; Suurmeijer, Reuvekamp, & Aldenkamp, 2001) is generally conceded. The lack of a common definition leads to an imperfect measurement of quality of life (Ferrans & Powers, 1985; Jacoby, 1992). Quality of life means different things to different people in different places and at different times (Katz). Perceived variations in quality of life may also arise from differences between disciplines, diseases, or conditions (Bertero & Ek). Farquhar classified quality of life using a taxonomy with definitions incorporating ideas of satisfaction--dissatisfaction and happiness--unhappiness. These subjective indicators are based on an individual's evaluation of life experiences. Farquhar's is the approach taken in this study. Holmes classified quality of life using an adaptation model. The adaptation level affects a person's appraisal of quality of life by influencing the degree to which positive experiences contribute to life satisfaction and negative experiences contribute to distress. Holmes' view supports Roy's Adaptation Model.

Objective indicators of quality of life have been identified with regard to housing conditions, rates of employment, income, number of children, seizure control, and marriage (Hanested, 1990; Meeberg, 1993). Adults with epilepsy have lower marriage rates than other adults (Baker, Jacoby, Buck, Stalgis, & Monnet, 1997; Choi-Kwon et al., 2003; Jacoby, 1992; Mrabet, Mrabet, Zouari, & Ghachem, 2004). Underemployment and unemployment have been identified as two of the most serious problems adults with epilepsy encounter (Baker et al.; Kleinman et al., 1995; Suurmeijer et al., 2001). The employment rates among participants with controlled seizures were comparable to those of the general population (Jacoby). Choi-Kwon et al. reported high rates of full-time employment (66%) and self-employment (21%), probably due to their participants' high levels of education (more than half had 12 years of formal education).

Perceived family reactions refers to family behaviors that occur in response to epilepsy. The influence of this factor should not be underestimated. Epilepsy may create a family tragedy in which the burden is different for different family members (Kleinman et al., 1995). The influence of epilepsy on the family as a whole is a neglected topic (Hartshorn & Byers, 1994). Families use secrecy and concealment (Butau & Piachaud, 1993; Ju, Chang, Chen, Huang, & Tsai, 1990; Raty, Hamrin, & Soderfeldt, 1999; Scambler & Hopkins, 1990), overprotection (Butau & Piachaud; Kleinman et al.; Scambler & Hopkins), and acceptance and support (Hartshorn & Byers) as responses to epilepsy. Secrecy and concealment cause families to deprive themselves of information that could help them cope with epilepsy. Overprotection instills insecurity and overdependence, often confining the person with epilepsy to the home. Positive experiences include receiving emotional support from family members and being treated as normal people (Hartshorn & Byers).

Theoretical Framework

Roy's Adaptation Model guided the conceptualization of this study. Andrews and Roy (1991) viewed the person as an adaptive system in constant interaction with the environment; health as a state and process of being and becoming an integrated, whole person; and the goal of nursing as the promotion of adaptation in each of the four adaptive modes (i.e., physiologic, self-concept, interdependence, and role-function), each of which contributes to the person's health, quality of life, and death with dignity. In this study, quality of life was operationalized using indicators representing physiological integrity (seizure activity and side effects of drugs), psychological integrity (health perceptions and feelings) in the self-concept mode, social integrity (ability to perform job roles, family roles, and social activities) in the role-function mode, and relationships with friends and family in the interdependence mode. Perceived family reactions were operationalized as environmental stimuli. Roy's Adaptation Model assisted in the identification of positive stimuli that can be used by nurses in counseling adults with epilepsy for an optimal quality of life.

Methods

This descriptive correlational study was part of a larger study that sought to describe and examine the relationship of perceived family reactions, personal beliefs, and coping to the quality of life of adults with epilepsy in Harare, Zimbabwe. Only the section dealing with the relationship of perceived family reactions to quality of life is described here.

Sample

Sixty-six adults with generalized seizures were interviewed as they reported for their monthly follow-up appointments. According to the World Health Organization (2004), the majority of reported cases of epilepsy in Africa involve generalized seizures that are relatively spectacular and easy to diagnose. Partial seizures may not be closely aligned with the epilepsy stereotype and may not be detected by untrained observers.

To be included in the study, a participant had to meet the following criteria: be diagnosed with generalized seizures, be taking medication (verified by medical records), be 18-45 years of age, had had seizures for 3 or more years, be Shona- or English-speaking, and be able to participate in verbal interviews.

Procedure

A convenience sample was used for the study, and an interview schedule was chosen because of the study's subjective nature. Precoded and open questions were used to elicit information on demographics, quality of life, and perceived family reactions. Demographic data encompassed gender, marital and employment status, monthly income, religion, duration of epilepsy, and the number of drugs taken per day.

The Quality of Life in Epilepsy 89 (QOLIE-89) patient inventory (Devinsky et al., 1993) was used. The instrument is disease specific for epilepsy and has an established internal consistency reliability range of r = .78 to r = .92. Twelve items were adapted for local use and to fit into Roy's adaptive modes. Open-ended questions were derived from Frank's (1988) study on adaptation to dialysis. Open-ended questions and those requiring a yes or no response were categorized into groupings that were used for descriptive purposes. To arrive at a total score for each mode, the numerical values on the Likert scales were summed.

The physiologic mode contained three items. Item 1 required a yes or no response as to the occurrence of seizures within the last 4 weeks. Item 2 was a 5-point Likert scale; scores ranged from 1 for yes, extremely bothered to 5 for no, not at all bothered for memory difficulties, sleepiness during the day, tiredness, difficulty in thinking clearly, and fits or seizures. The range of scores for the physiologic mode was 5-25; a score of 12.5 or above indicated a more favorable quality of life. Item 3 was an open-ended question to elicit information on any non-drug treatment used.

The self-concept mode was a 5-point Likert scale consisting of six positive or negative statements on health perceptions and emotional well-being. Participants were required to select one option indicating how true or false each statement was for them. A score of 1 represented definitely true and 5 represented definitely false for negative statements, and vice versa for positive statements. The range of scores was 6-30; a score of 15 or higher indicated a more favorable quality of life.

The interdependence mode contained five items on a 5-point Likert scale. For items 1 and 2, participants were required to select an option that indicated how their relationships with family and friends had been affected by their condition. The scale ranged from 1 for yes, affected a great deal to 5 for no, not at all affected. For items 3 and 4 participants rated the amount of togetherness with family and friends on a scale ranging from 1 for poor to 5 for excellent. In item 5, participants selected an option that indicated how often family or close friends allowed them to do things for themselves, using a scale ranging from I for none of the time to 5 for all of the time. The range was 5-25; a score of 12.5 or higher indicated a more favorable quality of life.

The role-function mode contained two items. Item 1 was open-ended to elicit information on ways in which job or school roles had changed since the onset of epilepsy. Item 2 was a 4-point Likert scale ranging from 1 for not at all to 4 for more than 12 times to indicate the frequency with which participants had been involved in social activities such as visiting friends, going to church, visiting social clubs, attending a sports event, or going to a cinema during the last 3 months. The range was 5-20; a score of 10 or higher indicated a more favorable quality of life.

The perceived family reactions instrument was developed by the authors based on the literature (Butau & Piachaud, 1993) and on items 86 and 88 on QOLIE-89 (Devinsky et al., 1993). Ten items were developed into a 5-point Likert scale to assess secrecy, overprotection, fear of seizures, level of support, and degree of isolation. Participants were requested to choose one option for each item to indicate what they thought happened in their family. The scale ranged from 1 for all the time to 5 for none of the time for the negative items (1, 4, 5, 7, and 10) and vice versa for the positive items (2, 3, 6, 8, and 9). The range of total scores was 10-50; a score of 25 or higher indicated positive family reactions.

The interview schedule was translated from English to Shona by the Department of African Languages at the University of Zimbabwe. Bilingual translators checked for consistency in meaning and maintained cultural content. Participants responded in their language of choice. During the face-to-face interviews, questions were further prompted to clarify information that was not clear. Pretesting of the interview schedule was carried out to assess its reliability and validity and to evaluate its effectiveness, clarity, and cultural relevance.

Five city health clinics were selected. Each of them had many patients, offered similar primary healthcare services, and represented lower income urban areas. (Most patients from higher income urban areas are seen in doctors' private clinics. Different settings enhance generalizability, but the conditions under which data are collected are not similar and responses may be influenced by differences in income and educational levels.) Monthly follow-up dates were noted in advance, and the primary investigator visited the clinic on those dates. Explanations offered through verbal or written informed consent ensured that the required number of participants was obtained. Interviews lasting 30-50 minutes were conducted privately before the patient's consultation. Signed consent forms were not attached to the instruments to ensure anonymity. Completed questionnaires were placed in a locked cabinet to ensure confidentiality.

Data Analysis

The first research question--"What is the quality of life of adults with epilepsy?"--was analyzed using descriptive statistics to determine the percentage of adults with epilepsy who experienced satisfactory function in each mode. The second research question--"What are the perceived family reactions of adults with epilepsy?'--was analyzed using descriptive statistics to determine the use of overprotection, secrecy, concealment, or acceptance as strategies by which families and individuals managed epilepsy. The third research question--"Is there a relationship between perceived family reactions and quality of life of adults with epilepsy?"--was analyzed using the Pearson product--moment correlation test. Regression analysis was used to examine the strength of the relationship, at a significance level of .05. The Statistical Package for the Social Sciences was used for the analyses.

Findings

Demographic and Clinical Characteristics

Some of the demographic and clinical characteristics of the participants are presented in Table 1. The sample (N = 66) was predominantly male and single, with a mean age of 31 years. Only 8 were permanently employed; most were either self-employed or unemployed. Monthly income for the majority (41) ranged from 0 to 500 Zimbabwean dollars. Only six did not belong to any church. Twenty-three had lived with epilepsy for more than 20 years. Most took one antiepileptic drug per day (mostly phenobarbitone).

Quality of Life

The highest possible score for the physiologic mode was 25. The majority had a total score above 12.5, indicating a more favorable quality of life. Seizure frequency, the side effects of drugs, and the type of treatment used are presented in Table 2. Forty-eight participants had been seizure free during the last 4 weeks. The majority had experienced various side effects of drugs, such as forgetting, sleepiness during the day, tiredness, and difficulty in thinking clearly. Forty-nine participants used only drugs to prevent seizures, eight used prayer, five used medicines from traditional healers, and four used snuff in addition to drugs.

The highest possible score for the self-concept mode was 30. Most participants had a positive self-concept, as indicated by a total score of 15 or above. Perceived health state and feelings are provided in Table 3. Twenty-six denied getting sicker sooner than other people, but 27 agreed with the statement; this is an indication that views on the perceived health state varied among the participants. Forty-five believed they were as healthy as anybody else, and 40 felt good about themselves. Twenty-seven (41%) did not expect their health to get worse, 20 (30%) were not sure, and 19 (29%) expected their health to get worse. Many appraised themselves as having a nervous disposition (32, 49%), 22 (33%) indicated otherwise, and 12 (18%) were not sure. Thirty-five (53%) felt downhearted all the time, with 24 (36%) disagreeing and seven (11%) not sure.

The highest possible score for the interdependence mode was 25; the majority (60, 91%) had a total score of 12.5 or higher, indicating a more favorable quality of life. Relationships with family and friends were affected in varying degrees, while togetherness with family and friends was rated as good to excellent by most (Table 4). Fifty-one were allowed to do things for themselves in varying degrees, with only 15 never being allowed to do things for themselves. This is an indication that overprotection was minimal.

The highest possible score for the role-function mode was 20. The majority had a total score of 10 or below; this indicates that their quality of life was low in the role-function mode. Most participants had stopped working, stopped schooling, or changed jobs due to seizures (Table 5). Forty-six cited visiting friends as the most popular activity, and 44 cited going to church; the cinema was the least popular for 59, primarily because participants tended to watch television.

Perceived Family Reactions

The highest possible score for perceived family reactions was 50. Family reactions were perceived positively; the majority (62, 94%) had a total score of 25 or higher. However, only 18 perceived their families as never frightened by their seizures. Only 12 (18%) perceived their families as talking openly about their epilepsy all the time, and five (8%) perceived their families as talking to outsiders about their epilepsy all the time (Table 6). This result suggests that secrecy was a strategy families used to manage epilepsy.

Participants were uncertain about their families' overprotection. Only 14 considered that they were not kept under constant watch by the family, and 38 had been stopped in varying degrees from going to school or work until seizures were under control. In contrast, only two were never allowed to do things for themselves, and 34 were never prevented from going out alone. Participants felt accepted and supported by their families; only five indicated that they were never treated like others in the family. Fifty-eight indicated in varying degrees that there was always someone available in the family to help when help was needed. However, 35 (53%) indicated that they felt isolated from others in the family to varying degrees.

Relationship Between Perceived Family Reactions and Quality of Life

The Pearson product-moment correlation test showed that family reactions were positively correlated and significant to quality of life (r = .39, p = <.01; Table 7). This finding supports a linear relationship. As positive family reactions increase, quality of life increases. Table 8 shows that the effect of the independent variable--perceived family reactions--is indicated by significant [R.sup.2] = .15345 (F = 11.60132, p = <.01). This means that perceived family reactions explain 15% of the variance in quality of life. Regression analysis of coefficients ([beta]) of the independent variable was significant (p = <.01). Therefore, the regression coefficient [beta] (1.047854) represents a change in the quality of life for a unit change in perceived family reactions. The conclusion is that perceived family reactions have a positive influence on quality of life.

Discussion

Data analysis indicates that epilepsy did not adversely affect quality of life in the physiologic, self-concept, or interdependence mode but did affect quality of life in the role-function mode. With regard to the physiologic mode, epilepsy was mostly well controlled; the majority had been seizure free during the last 4 weeks and took one antiepileptic drug per day. This is consistent with Jacoby's (1992) finding that clients with controlled seizures were well adjusted and that epilepsy did not profoundly reduce quality of life. Likewise, Leidy, Elixhauser, Vickrey, Means, and Willian (1999) and Mrabet et al. (2004) established that seizure-free adults can have health-related quality-of-life levels comparable to those of the general population and those of the control group, respectively.

Study findings indicate that participants had a positive self-concept. The relationship between self-concept and well-being has been well documented. Collings (1995) reported that self-concept seemed to be the best overall indicator of well-being (p = <.0001) when compared with populations without epilepsy. Smith, Baker, Dewey, Jacoby, and Chadwick (1991) also found that seizure severity was the most significant indicator of self-esteem (p = <.0005). This finding reflects the interrelatedness of the adaptive modes and may explain why adults with epilepsy have a positive self-concept--because their epilepsy is mostly well controlled. Thus, the importance of optimizing seizure control cannot be overemphasized.

Quality of life was not adversely affected in the interdependence mode. However, the fact that more than half of the adults were single implies an altered interdependence mode and reinforces Matuja and Rwiza's (1994) finding that 80.5% of the clients in their Tanzanian study would not marry anyone with epilepsy. Jacoby (1992) found that 35% of adults with epilepsy were single and attributed this status to social isolation and overprotection that may limit the chances of meeting prospective partners. In contrast, Kleinman et al.'s (1995) study indicated that 74% of Chinese adults with epilepsy were married; these were arranged marriages for which parents had disguised epilepsy or made promises of a job or money. The consequences of disguise may include tensions that must be negotiated over the long term; these are factors that should be stressed to families. Persons with epilepsy need to be encouraged to feel that their marriage prospects are as good as those of anyone else.

Quality of life was adversely affected in the role-function mode. Demographic data showed that only 26% had permanent employment or temporary employment; 34.8% were unemployed, and 39.4% were self-employed. The percentage of employed and self-employed workers was lower than for the general population (39% and 45%, respectively), while the percentage of unemployed workers (excluding communal farm workers) was much higher than for the general population (6%; Central Statistical Office, 2004). These findings correspond with those of previous studies, in which underemployment and unemployment were identified as two of the most serious problems encountered by adults with epilepsy (Baker et al., 1997; Kleinman et al., 1995; Suurmeijer et al., 2001).

The fact that most adults were self-employed, primarily in self-help projects near their homes, may reflect their fear of injury, job loss, or embarrassment from public seizures. In Zimbabwe, home-based projects in residential areas have been legally promoted as part of the informal economy since 1994. Analysis of employment type according to seizure frequency might have helped identify whether the self-employed had more frequent seizures than those employed outside the home, as reported by Choi-Kwon et al. (2003). Self-help activities identified in this study included selling sweets or vegetables, carpentry, dressmaking, crocheting, sculpture, welding, plumbing, and making toy cars for sale. Nurses should encourage community support for the financing of these self-help projects to economically empower adults with epilepsy.

As Jacoby (1992) also found, visiting friends was the most popular activity for adults with epilepsy. The second most popular activity was going to church (67%); in Jacoby's study, going to church was the least popular activity (17%). This finding may not be surprising, because religion plays a major role in the lives of most adults in Zimbabwe. Mrabet et al. (2004) proposed Tunisian religious beliefs as influencing factors to explain cross-cultural differences. It would seem logical to target churches in Zimbabwe for health education programs. Nurse practitioners working collaboratively with religious organizations might be effective in improving the quality of life of adults with epilepsy.

Family reactions were perceived positively by the majority. Most felt accepted and supported by their families. They indicated that they were not treated differently and that help from the family was always available when needed. The finding that only 6.1% of adults with epilepsy lived alone reflects a high level of acceptance that may be explained by the supportive, extended family concept in Zimbabwe. Mrabet et al. (2004) reported that patients in African countries are not alone when faced with a chronic illness because family closeness and support does not substantially weaken in adulthood.

Adults with epilepsy were uncertain about their families' reactions with regard to overprotection; they were allowed to do things for themselves in varying degrees while being kept under constant watch. This supports Butau and Piachaud's (1993) finding of mixed reactions about being treated normally but also needing constant supervision. Scambler and Hopkins (1990) identified overprotection as the most common source of anger and resentment against family members. Therefore, family members need to understand that overprotection may make adults with epilepsy feel worthless and dependent, as noted by Hartshorn and Byers (1994).

Fear of seizures, isolation of the individual, secrecy, and concealment were the negative strategies used by families and individuals to manage epilepsy. Similar findings were reported in previous research. Hartshorn and Byers (1994) identified fear and rejection as the worst attitudes experienced from family members. Ju et al. (1990) found that 80% of parents concealed the illness for fear of social prejudice. Several parents in Scambler and Hopkins' (1990) study banned the use of the word epilepsy inside and outside the home, with siblings kept in the dark. Yet participants in Hartshorn and Byers' study verbalized a need to be treated normally within an open, caring, and accepting environment in which seizures are talked about openly. Moreover, secrecy limits the use of social support systems that could enable families to adjust positively to living with epilepsy.

Family reactions were significant and positively correlated to the quality of life of adults with epilepsy. Collings (1995) confirmed the importance of the family to attaining a good quality of life for patients with epilepsy. A supportive environment has been identified as the second major determinant of the psychosocial status of the patient, after the disease process itself (Suurmeijer et al., 2001).

Recommendations

Further studies need to be conducted to determine how supportive families ensure that someone is always available for assistance; how individual members in supportive families communicate with the person with epilepsy and with other family members to alleviate stressful situations; and whether the social obligations of caregiving are the same for older, unmarried people as for younger, single people with epilepsy. The information may be incorporated into family counseling.

Additional research may be required to assess whether differences exist between caregivers' perceptions and those of adults with epilepsy. Findings would shed more light on the extent of isolation, overprotection, secrecy, and concealment and would provide information that could be used when teaching clients and their families about living with epilepsy.

The study ought to be expanded to include multiple seizure types. Baker et al. (1997), in their study of the impact of frequent seizures on cost of illness, quality of life, and mortality, found that participants having frequent seizures or a mixture of seizures were relatively more affected. Future studies may assess whether persons with epilepsy who go to a place of worship are less demanding or more accepting of their condition than those who do not (Mrabet et al., 2004). Further research also might be conducted to assess the knowledge of first aid measures for seizures among family members and other persons.

Limitations

Care should be taken in generalizing the study findings to all adults with epilepsy due to nonprobability sampling, a focus on generalized seizures, and a lack of reliability coefficients for the modified instruments in this study. The findings may also not reflect the views of all adults with epilepsy because those from higher income urban areas or rural populations and those who did not come for treatment at city health clinics were not represented. Some participants responded in English, while others responded in Shona; that factor may have affected their understanding. Evaluation of seizure frequency based on a patient's self-report was a further limitation; frequent seizures have been reported to particularly affect physical, role-functioning, and general health perceptions (Leidy et al., 1999). Despite these limitations, the study provides insight into ways in which the quality of life of adults with epilepsy can be improved by stressing effective control of seizures, encouraging positive family reactions, and providing financial support for self-help projects.

Summary

The findings indicate that epilepsy did not adversely affect the quality of life in Roy's physiologic, self-concept, and interdependence modes but did negatively affect the role-function mode. The study confirms earlier findings that achieving better control of seizures enhances quality of life. Fear, isolation of the individual, secrecy, concealment, and overprotection were identified as the negative strategies used by families and individuals to manage epilepsy. The use of Roy's Adaptation Model helped identify family reactions as significant and positively correlated to the quality of life of adults with epilepsy The findings underscore the importance of encouraging positive family reactions such as openness, acceptance, and support to enhance the quality of life of adults with epilepsy.

Acknowledgments

Thanks am accorded to the staff at RAND Distribution Services, Santa Monica, CA, for mailing (gratis) the QOLIE-89 instrument; the staff at the Epilepsy Support Foundation of Zimbabwe for their comments and for some of the literature; and to our children for their assistance.

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Questions or comments about this article may be directed to G. L. Saburi, MSN RN, at glsab@yahoo.co.uk or PO Box A178, Avondale, Harare, Zimbabwe. She is a lecturer and primary investigator in the Department of Nursing Science, College of Health Sciences, University of Zimbabwe, Avondale, Harare, Zimbabwe.

K. G. Mapanga, PhD RN, is a lecturer in and the chair of the Department of Nursing Science, College of Health Services, University of Zimbabwe.

M. B. Mapanga, PhD RN, is a lecturer in the Department of Nursing Science, College of Health Sciences, University of Zimbabwe.
Table 1. Demographic Characteristics of the Participants
(N = 66)

 n %

Gender
 Male 40 60.6
 Female 26 39.4
Marital status
 Single 38 57.6
 Married 20 30.3
 Divorced 5 7.6
 Widowed 3 4.5
Employment status
 Self-employed 26 39.4
 Unemployed 23 34.8
 Temporarily employed 9 13.6
 Permanently employed 8 12.1
Monthly income (Zimbabwean dollars)
 0-500 41 62.1
 501-1,000 15 22.7
 1,001-2,000 8 12.1
 2,001-3,000 1 1.5
 3,001 or more 1 1.5
Religious affiliation
 Roman Catholic 20 30.3
 Apostolic 13 19.7
 Methodist 5 7.6
 None 6 9.1
 Other 22 33.3
Duration of epilepsy (years)
 3-9 22 33.3
 10-14 16 24.2
 15-19 5 7.6
 More than 20 23 34.8
Drugs taken per day
 1 48 72.7
 2 18 27.3

Table 2. Quality of Life: Physiologic Mode

Factor n %

Seizure within last 4 weeks
 Yes 18 27.3
 No 48 72.7
Forgetting
 Yes, extremely bothered 6 9.1
 Yes, a lot bothered 4 6.1
 Yes, somewhat bothered 10 15.2
 Only a little bothered 21 31.8
 No, not at all bothered 25 37.8
Sleepiness during the day
 Yes, extremely bothered 7 10.6
 Yes, a lot bothered 1 1.5
 Yes, somewhat bothered 10 15.2
 Only a little bothered 18 27.3
 No, not at all bothered 30 45.5
Tiredness
 Yes, extremely bothered 5 7.6
 Yes, a lot bothered 9 13.6
 Yes, somewhat bothered 5 7.6
 Only a little bothered 17 25.8
 No, not at all bothered 30 45.5
Difficulty in thinking clearly
 Yes, extremely bothered 7 10.6
 Yes, a lot bothered 8 12.1
 Yes, somewhat bothered 9 13.6
 Only a little bothered 12 18.2
 No, not at all bothered 30 45.5
Nondrug treatment used
 None 49 74.2
 Prayer 8 12.1
 Traditional medicine 5 7.6
 Snuff 4 6.1

Table 3. Quality of Life: Self-Concept Mode

Factor n %

I seem to get sick a little easier than other
people.
 Definitely true 15 22.7
 Mostly true 12 18.2
 Not sure 13 19.7
 Mostly false 7 10.6
 Definitely false 19 28.8
I am as healthy as anybody I know.
 Definitely false 7 10.6
 Mostly false 4 6.1
 Not sure 10 15.2
 Mostly true 19 28.8
 Definitely true 26 39.4
I feel good about myself.
 Definitely false 13 19.7
 Mostly false 5 7.6
 Not sure 8 12.1
 Mostly true 12 18.2
 Definitely true 28 42.4
I expect my health to get worse.
 Definitely true 9 13.6
 Mostly true 10 15.2
 Not sure 20 30.3
 Mostly false 6 9.1
 Definitely false 21 31.8
I am a very nervous person.
 Definitely true 15 22.7
 Mostly true 17 25.8
 Not sure 12 18.2
 Mostly false 8 12.1
 Definitely false 14 21.2
I feel downhearted all the time.
 Definitely true 22 33.3
 Mostly true 13 19.7
 Not sure 7 10.6
 Mostly false 8 12.1
 Definitely false 16 24.2

Table 4. Quality of Life: Interdependence Mode

Factor n %

Relationships with family
 Affected a great deal 8 12.1
 Affected a lot 6 9.1
 Somewhat affected 6 9.1
 A little affected 17 25.8
 Not at all affected 29 43.9
Relationships with friends
 Affected a great deal 6 9.1
 Affected a lot 2 3.0
 Somewhat affected 7 10.6
 A little affected 21 31.8
 Not at all affected 30 45.5
Togetherness with family
 Poor 4 6.1
 Fair 13 19.7
 Good 25 37.9
 Very good 7 10.6
 Excellent 17 25.8
Togetherness with friends
 Poor 3 4.5
 Fair 16 24.2
 Good 27 40.9
 Very good 6 9.1
 Excellent 14 21.2
Allowed to do things for self
 None of the time 15 22.7
 A little of the time 7 10.6
 Some of the time 14 21.2
 Most of the time 17 25.8
 All of the time 13 19.7

Table 5. Quality of Life: Role-Function Mode

Factor n %

Job or school role changes
 No change 29 43.9
 Stopped job due to fits 17 25.8
 Schooling disturbed due to fits 15 22.7
 Changed job due to fits 5 7.6
Visits to friends
 Not at all 20 30.3
 1-2 times 17 25.8
 3-12 times 13 19.7
 More than 12 times 16 24.2
Church attendance
 Not at all 22 33.3
 1-2 times 6 9.1
 3-12 times 21 31.8
 More than 12 times 17 25.8
Visits to social club
 Not at all 54 81.8
 1-2 times 5 7.6
 3-12 times 5 7.6
 More than 12 times 2 3.0
Sports event attendance
 Not at all 43 65.2
 1-2 times 12 18.2
 3-12 times 6 9.1
 More than 12 times 5 7.6
Cinema attendance
 Not at all 59 89.4
 1-2 times 5 7.6
 3-12 times 1 1.5
 More than 12 times 1 1.5

Table 6. Perceived Family Reactions (N = 66)

 n %

My family is frightened by my fits.
 All the time 10 15.2
 Most of the time 16 24.2
 Some of the time 14 21.2
 A little of the time 8 12.1
 None of the time 18 27.3
My family talks openly about my epilepsy.
 None of the time 25 37.9
 A little of the time 10 15.2
 Some of the time 11 16.7
 Most of the time 8 12.1
 All the time 12 18.2
My family talks to outsiders about my epilepsy.
 None of the time 38 57.6
 A little of the time 8 12.1
 Some of the time 9 13.6
 Most of the time 6 9.1
 All the time 5 7.6
My family constantly watches me.
 All the time 28 42.4
 Most of the time 16 24.2
 Some of the time 5 7.6
 A little of the time 3 4.5
 None of the time 14 21.2
My family prevents me from going to school
or work.
 All the time 15 22.7
 Most of the time 5 7.6
 Some of the time 15 22.7
 A little of the time 3 4.5
 None of the time 28 42.4
My family allows me to do things for myself.
 None of the time 2 3.0
 A little of the time 10 15.2
 Some of the time 9 13.6
 Most of the time 24 36.4
 All the time 21 31.8
My family never allows me to go out alone.
 All the time 9 13.6
 Most of the time 6 9.1
 Some of the time 10 15.2
 A little of the time 7 10.6
 None of the time 34 51.5
My family treats me like others in the family.
 None of the time 5 7.6
 A little of the time 3 4.5
 Some of the time 6 9.1
 Most of the time 14 21.2
 All the time 38 57.6
There is always someone available to help.
 None of the time 8 12.1
 A little of the time 11 16.7
 Some of the time 10 15.2
 Most of the time 16 24.2
 All the time 21 31.8
A always feel isolated from others in the family.
 All the time 6 91
 Most of the time 10 15.2
 Some of the time 12 18.2
 A little of the time 7 10.6
 None of the time 31 47.0

Table 7. Correlational Analysis

 Quality of Perceived Family
Variable Life Reactions

Quality of life 1.00 .39 *
Perceived family reactions .39 * 1.00

* p = < .01.

Table 8. Regression Analysis of Quality of Life

Variable [beta] SE [beta] [beta] Significant t

Perceived family 1.047854 * .307643 .391732 * .001
 reactions
Constant 31.362526 10.026367 .0026

Note. [R.sup.2] = .15345, F = 11.60132.

* p = < .01.
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Title Annotation:neuroscience nursing research; Harare, Zimbabwe; includes statistical tables
Author:Saburi, G.L.; Mapanga, K.G.; Mapanga, M.B.
Publication:Journal of Neuroscience Nursing
Geographic Code:6ZIMB
Date:Jun 1, 2006
Words:7229
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