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Parental anxiety and quality of life in children with epilepsy
Epilepsy & Behavior Epilepsy & Behavior 4 (2003) 483–486 www.elsevier.com/locate/yebeh
Parental anxiety and quality of life in children with epilepsy Jane Williams,* Chris Steel, Gregory B. Sharp, Emily DelosReyes, Tonya Phillips, Stephen Bates, Bernadette Lange, and May L. Griebel Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AK, USA Received 21 May 2003; revised 27 June 2003; accepted 28 June 2003
Abstract Parental beliefs and attitudes concerning epilepsy may significantly impact adjustment and quality of life for both the child and family. The purpose of the present study was to examine the relationship between parental anxiety and quality of life in pediatric patients with ongoing epilepsy. Subjects were parents (n ¼ 200) of children between the ages of 6 and 16 years who had been diagnosed and treated for epilepsy for at least 1 year. Parents were given quality of life and anxiety questionnaires during the childÕs clinic visit. A stepwise regression analysis suggested that severity of comorbid conditions, parental anxiety, seizure control, and number of medications were significantly associated with quality of life for these children. Parents with increased anxiety whose children had poorly controlled seizures and a comorbid disability were found to have diminished quality of life. Ó 2003 Elsevier Inc. All rights reserved. Keywords: Pediatric; Epilepsy; Parental anxiety; Quality of life
1. Introduction There has been increasing interest in the assessment of quality of life in children with chronic illnesses, as many of these conditions have a significant impact on both the physical and psychosocial functioning of the child and family. One such medical condition is epilepsy, whose nature and course tend to be highly unpredictable [1]. Studies have demonstrated that the health-related quality of life in children with epilepsy compared with healthy controls is diminished in both psychosocial and physical domains [2]. Some specific variables, such as severity of illness and intellectual disability, have been shown to independently compromise the quality of life in children with refractory epilepsy [3,4]. Additionally, parental adjustment has been negatively related to severity of the childÕs epilepsy [5]. Parental beliefs and attitudes concerning epilepsy significantly impact adjustment and quality of life for * Corresponding author. Present address: Wake Forest University for Medical Sciences, NWAHEC, One Medical Center Boulevard, Winston-Salem, NC 27157-1060, USA. E-mail address: [email protected] (J. Williams).
1525-5050/$ - see front matter Ó 2003 Elsevier Inc. All rights reserved. doi:10.1016/S1525-5050(03)00159-8
both the child and family. Parents often worry that their child will die when a seizure occurs, that seizures and anticonvulsants result in a loss of intelligence, and that their child has a brain tumor [6,7]. Frequently these beliefs result in overprotection and limitations imposed on the childÕs activities [6]. Parental anxiety, which may result in restriction of activities, has been hypothesized to be associated with decreased quality of life for both the child and family. The purpose of the present study was to examine the relationship between parental anxiety and quality of life in pediatric patients with ongoing epilepsy.
2. Methods 2.1. Subjects Subjects were parents (n ¼ 200) of children between the ages of 6 and 16 years (mean ¼ 10.3 years) who had been diagnosed and treated for epilepsy for at least 1 year. Informants included 179 mothers and 21 fathers. Ethnicity was 77% Caucasian, 22% African-American, and 1% Hispanic or Asian. Socioeconomic status (SES) was determined by the Hollingshead Four Factor Index
484
J. Williams et al. / Epilepsy & Behavior 4 (2003) 483–486
of Social Status [8]. Based on educational and occupational levels of the parents, mean SES was within the middle range (mean ¼ 34.3, range 13–63) and reflective of skilled craftsmen, clerical workers, and salespersons. Parents were consecutively recruited at the time of their childÕs visit to outpatient neurology clinics at a universityaffiliated childrenÕs hospital. There were no exclusions from the study. Of the children whose parents were included in the study, there were 98 females and 102 males. The mean time since diagnosis was 5 years, 4 months (range ¼ 1–15 years). Seizure types included 64% with complex partial seizures, 13% with generalized tonic– clonic seizures, 20% with absence seizures, and 3% with mixed seizure types, primarily with a diagnosis of Lennox–Gestaut. Of the 149 children who had had brain MRI, 54% had normal scans and 46% had abnormal scans. One hundred thirty-nine of the children were on one antiepileptic drug (AED), 48 were on 2 AEDs, 12 were on 3 AEDs, and 1 child was on 4 AEDs. Based on parent report, 68% of the children were perceived to have good control of their seizures (i.e., no seizures or no more than one seizure per month), 12% were perceived to have moderate control (i.e., no more than two or three seizures a month), and 20% were perceived to have uncontrolled seizures (i.e., daily or weekly seizures). 2.2. Procedure The study was approved by the Human Research Advisory Committee at the University of Arkansas for Medical Sciences. Written permission for participation was obtained from the parent, and only one parent refused to participate. At the time of the neurology clinic visit, demographic and seizure severity information was collected, as were data concerning comorbid learning, emotional, or behavioral disorders. The parent was administered two questionnaires including the Impact of Childhood Illness Scale [9] and the State–Trait Anxiety Inventory for Adults [10]. 2.3. Instruments The Impact of Childhood Illness Scale is a 30-item questionnaire that assesses quality of life in children with a chronic illness. It has been shown to discriminate between children with epilepsy and those with diabetes, with more negative effects on quality of life for children with epilepsy. Factor analysis suggests that more than a third of the variance results from the impact of epilepsy on the parents and family. Two other factors involve the impact on development and the impact on health [3]. The scaleÕs 30 items can be rated by the parent on two dimensions—frequency and importance. For the present study, only the frequency dimension was employed. On this dimension, each question is rated by the parent as ‘‘never or rarely true,’’ ‘‘sometimes true,’’ or ‘‘often or
really true.’’ This subscale was chosen because it reflects whether the parent believes statements such as ‘‘my child is more moody because of his/her illness’’ and how prevalent they are for their child. The responses are scored 0, 1, or 2, with a range of scores from 0 to 60. Higher scores are associated with decreased quality of life. The mean total frequency score was 19.82 for children with comparable seizure characteristics who had been treated for an average of 4 years [3]. The State–Trait Anxiety Inventory for Adults (STAI) is a 20-item questionnaire that assesses parental anxiety. Each statement has four possible responses from ‘‘almost never’’ to ‘‘almost always.’’ Scores range from 20 to 80. Higher scores are associated with increased anxiety. Only the Trait Anxiety Scale was administered as it focuses on more general and longstanding anxiety. Mean scores for working adults are 34.89 (SD ¼ 9.2) for males and 34.79 (SD ¼ 9.2) for females. 2.4. Covariates In addition to the parental score on the STAI, other covariates included: severity of comorbid conditions, seizure control, SES, years since diagnosis, number of medications, MRI, ethnicity, gender, and age of the child. Severity of comorbid conditions was based on four categories including: children with no other diagnosed conditions, children diagnosed with mild learning and/or behavioral problems, children with moderate learning and behavioral problems who required significant interventions within the school setting, and children with severe disabilities that significantly interfered with ambulation, communication, and learning. 2.5. Statistics Correlation coefficients were employed to determine the strength of association between the total frequency score on the Impact of Childhood Illness Scale and the covariates. t tests and one-way ANOVAs were used to examine differences in quality of life scores and anxiety. TukeyÕs HSD was used to explore any differences based on multiple comparisons. A regression analysis was performed with the dependent variable consisting of the total mean score on the Impact of Childhood Illness Scale and predictor variables consisting of all of the covariates.
3. Results Total frequency score from the Impact of Childhood Illness Scale was 18.45 (SD ¼ 13.0, range 0–56). Correlations between total frequency score and other variables are found in Table 1.
J. Williams et al. / Epilepsy & Behavior 4 (2003) 483–486 Table 1 Correlations between total frequency scores on the Impact of Childhood Illness Scale and the covariates
485
Table 3 Differences in quality of life based on severity of comorbid conditions, level of parental anxiety, and seizure control
Impact of Childhood Illness Scale 0.48a 0.63a 0.42a )0.16b 0.31a 0.45a )0.02 )0.06 )0.05 )0.08
Parental anxiety Severity of comorbid conditions Seizure control Socioeconomic status Years since diagnosis Number of AEDs MRI Ethnicity Gender Age
Severity of comorbid conditions No other comorbid conditions (n ¼ 59) Mild learning/behavior problems (n ¼ 49) Moderate learning/behavior problems (n ¼ 57) Severe disabilities (n ¼ 35)
Correlation is significant at the 0.01 level. b Correlation is significant at the 0.05 level.
Table 2 Results from stepwise regression analysis concerning variables associated with quality of life in children with epilepsy
Severity of comorbid conditions Parental anxiety Seizure control Number of AEDs
8.53 15.98 22.75 31.63
a
a
Predictor
Impact of Childhood Illness score
Impact of childhood illness R2
t
P
0.39 0.50 0.55 0.57
8.1 6.8 3.4 3.1
<0.01 <0.01 <0.01 <0.01
The stepwise regression analysis suggested that severity of comorbid conditions, parental anxiety, seizure control, and number of medications were significantly associated with quality of life for these children (Table 2). The model accounted for 57% of the variance. A t test did not indicate significant differences (t ¼ 0:74, P > :46) in quality of life between males (mean ¼ 17.8) and females (19.14). One-way ANOVAs indicated that quality of life significantly decreased with increasing severity of comorbid conditions, increased level of parental anxiety, and decreased level of seizure control (Table 3). There were no differences between seizure types and quality of life with the exception of the mixed seizure type, which was associated with significantly diminished quality of life. The mean level of parental anxiety was 38.58 (SD ¼ 10.7, range ¼ 20–72) which falls within the normal range. Parental anxiety did not differ by seizure type or by level of seizure control. Anxiety of parents whose children had no comorbid conditions was significantly lower than that of parents whose children had mild, moderate, or severe disabilities.
4. Discussion Overall quality of life scores for children with chronic epilepsy were similar to previous findings involving use of the Impact of Childhood Illness Scale [3]. Like
Level of parental anxiety STAI score 6 32 (n ¼ 76) STAI score 33–43 (n ¼ 57) STAI score P 44 (n ¼ 67)
12.01 18.93 25.34
Seizure control Good Moderate Poor
14.99 21.25 28.53
a Parent scores were divided based on normative data. Group 1 ( 6 32) comprised scores below the mean; Group 2 (33–43), scores at the approximate mean and within one standard deviation above; and Group 3 ( P 44), scores at least one standard deviation above the mean.
previous studies, both condition severity, involving the presence of other disabilities, and poor seizure control were associated with decreased quality of life. Consistency of these findings would suggest that measurement of quality of life and targeted interventions are most useful and appropriate for families whose children have uncontrolled epilepsy and comorbid disabilities. In addition to severity of condition and illness variables, parental anxiety was found to be significantly associated with decreased quality of life. The relationship between parental anxiety and quality of life is not clearly understood. Highly anxious parents may be more likely to perceive higher risks for their children and misinterpret information about their childÕs condition. Previous findings suggest that parental anxiety may have an impact on parenting behaviors. In a study of children with epilepsy versus those with diabetes, changes to more dependent sleeping arrangements were found in children with epilepsy whose parents were worried over nocturnal seizure occurrence. Although it was unknown whether the changes in sleeping arrangements might have resulted in better health protection for the child, transmission of parental anxiety to the child concerning health status was postulated to be a psychological risk of this behavioral change [11]. Further research is needed to determine whether behavioral changes associated with parental anxiety interfere with the process of parent–child separation and independence. Findings from the present study suggest that families most vulnerable to reduced quality of life are those in which a child has poorly controlled epilepsy, comorbid
486
J. Williams et al. / Epilepsy & Behavior 4 (2003) 483–486
disabilities, and increased parental anxiety. Targeted interventions and support may be critical for these families. In a pilot study, parental anxiety was significantly decreased after exposure to a family-oriented program involving both education and counseling [12]. Respite care, parent support groups, increased education about seizure risks and psychosocial development, and greater access to mental health services may be beneficial.
References [1] Baker G. Assessment of quality of life in people with epilepsy: some practical implications. Epilepsia 2001;42:66–9. [2] Miller V, Palermo TM, Grewe S. Health-related quality of life in children with epilepsy. Presented at the 8th Florida Conference on Child Health Psychology, Gainesville, FL, 2001. [3] Hoare P, Mann H, Dunn S. Parental perception of the quality of life among children with epilepsy or diabetes with a new assessment questionnaire. Qual Life Res 2000;9:637–44.
[4] Sabaz M, Cairns DR, Lawson JA, Bleasel AF, Bye AME. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia 2001;42:621–8. [5] Pal DK, Chaudhury G, Das T, Sengupta S. Predictors of parental adjustment to childrenÕs epilepsy in rural India. Child Care Health Dev 2002;28:295–300. [6] Coulter DL. The psychosocial impact of epilepsy in childhood. Child Health Care 1982;11:48–53. [7] Shore C, Justin J, Musick B, Dunn D, McBride A, Creasy K. Psychosocial care needs of parents of children with new-onset seizures. J Neurosci Nurs 1998;30:169–74. [8] Hollingshead AB. Four Factor Index of Social Status, Author, New Haven, CT, 1975. [9] Hoare P, Russell M. The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Dev Med Child Neurol 1995;37:689–96. [10] Spielberger C, Gorsuch R, Lushene R. STAI Manual. Palo Alto, CA: Consulting Psychologist Press; 1970. [11] Williams J, Lange B, Sharp G, et al. Altered sleeping arrangements in pediatric patients with epilepsy. Clin Pediatr 2000;39:635–42. [12] Lewis MA, Hatton CL, Salas I, Chiofalo N. Impact of the childrenÕs epilepsy program on parents. Epilepsia 1991;32:365–74.
Parental anxiety and quality of life in children with epilepsy Jane Williams,* Chris Steel, Gregory B. Sharp, Emily DelosReyes, Tonya Phillips, Stephen Bates, Bernadette Lange, and May L. Griebel Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AK, USA Received 21 May 2003; revised 27 June 2003; accepted 28 June 2003
Abstract Parental beliefs and attitudes concerning epilepsy may significantly impact adjustment and quality of life for both the child and family. The purpose of the present study was to examine the relationship between parental anxiety and quality of life in pediatric patients with ongoing epilepsy. Subjects were parents (n ¼ 200) of children between the ages of 6 and 16 years who had been diagnosed and treated for epilepsy for at least 1 year. Parents were given quality of life and anxiety questionnaires during the childÕs clinic visit. A stepwise regression analysis suggested that severity of comorbid conditions, parental anxiety, seizure control, and number of medications were significantly associated with quality of life for these children. Parents with increased anxiety whose children had poorly controlled seizures and a comorbid disability were found to have diminished quality of life. Ó 2003 Elsevier Inc. All rights reserved. Keywords: Pediatric; Epilepsy; Parental anxiety; Quality of life
1. Introduction There has been increasing interest in the assessment of quality of life in children with chronic illnesses, as many of these conditions have a significant impact on both the physical and psychosocial functioning of the child and family. One such medical condition is epilepsy, whose nature and course tend to be highly unpredictable [1]. Studies have demonstrated that the health-related quality of life in children with epilepsy compared with healthy controls is diminished in both psychosocial and physical domains [2]. Some specific variables, such as severity of illness and intellectual disability, have been shown to independently compromise the quality of life in children with refractory epilepsy [3,4]. Additionally, parental adjustment has been negatively related to severity of the childÕs epilepsy [5]. Parental beliefs and attitudes concerning epilepsy significantly impact adjustment and quality of life for * Corresponding author. Present address: Wake Forest University for Medical Sciences, NWAHEC, One Medical Center Boulevard, Winston-Salem, NC 27157-1060, USA. E-mail address: [email protected] (J. Williams).
1525-5050/$ - see front matter Ó 2003 Elsevier Inc. All rights reserved. doi:10.1016/S1525-5050(03)00159-8
both the child and family. Parents often worry that their child will die when a seizure occurs, that seizures and anticonvulsants result in a loss of intelligence, and that their child has a brain tumor [6,7]. Frequently these beliefs result in overprotection and limitations imposed on the childÕs activities [6]. Parental anxiety, which may result in restriction of activities, has been hypothesized to be associated with decreased quality of life for both the child and family. The purpose of the present study was to examine the relationship between parental anxiety and quality of life in pediatric patients with ongoing epilepsy.
2. Methods 2.1. Subjects Subjects were parents (n ¼ 200) of children between the ages of 6 and 16 years (mean ¼ 10.3 years) who had been diagnosed and treated for epilepsy for at least 1 year. Informants included 179 mothers and 21 fathers. Ethnicity was 77% Caucasian, 22% African-American, and 1% Hispanic or Asian. Socioeconomic status (SES) was determined by the Hollingshead Four Factor Index
484
J. Williams et al. / Epilepsy & Behavior 4 (2003) 483–486
of Social Status [8]. Based on educational and occupational levels of the parents, mean SES was within the middle range (mean ¼ 34.3, range 13–63) and reflective of skilled craftsmen, clerical workers, and salespersons. Parents were consecutively recruited at the time of their childÕs visit to outpatient neurology clinics at a universityaffiliated childrenÕs hospital. There were no exclusions from the study. Of the children whose parents were included in the study, there were 98 females and 102 males. The mean time since diagnosis was 5 years, 4 months (range ¼ 1–15 years). Seizure types included 64% with complex partial seizures, 13% with generalized tonic– clonic seizures, 20% with absence seizures, and 3% with mixed seizure types, primarily with a diagnosis of Lennox–Gestaut. Of the 149 children who had had brain MRI, 54% had normal scans and 46% had abnormal scans. One hundred thirty-nine of the children were on one antiepileptic drug (AED), 48 were on 2 AEDs, 12 were on 3 AEDs, and 1 child was on 4 AEDs. Based on parent report, 68% of the children were perceived to have good control of their seizures (i.e., no seizures or no more than one seizure per month), 12% were perceived to have moderate control (i.e., no more than two or three seizures a month), and 20% were perceived to have uncontrolled seizures (i.e., daily or weekly seizures). 2.2. Procedure The study was approved by the Human Research Advisory Committee at the University of Arkansas for Medical Sciences. Written permission for participation was obtained from the parent, and only one parent refused to participate. At the time of the neurology clinic visit, demographic and seizure severity information was collected, as were data concerning comorbid learning, emotional, or behavioral disorders. The parent was administered two questionnaires including the Impact of Childhood Illness Scale [9] and the State–Trait Anxiety Inventory for Adults [10]. 2.3. Instruments The Impact of Childhood Illness Scale is a 30-item questionnaire that assesses quality of life in children with a chronic illness. It has been shown to discriminate between children with epilepsy and those with diabetes, with more negative effects on quality of life for children with epilepsy. Factor analysis suggests that more than a third of the variance results from the impact of epilepsy on the parents and family. Two other factors involve the impact on development and the impact on health [3]. The scaleÕs 30 items can be rated by the parent on two dimensions—frequency and importance. For the present study, only the frequency dimension was employed. On this dimension, each question is rated by the parent as ‘‘never or rarely true,’’ ‘‘sometimes true,’’ or ‘‘often or
really true.’’ This subscale was chosen because it reflects whether the parent believes statements such as ‘‘my child is more moody because of his/her illness’’ and how prevalent they are for their child. The responses are scored 0, 1, or 2, with a range of scores from 0 to 60. Higher scores are associated with decreased quality of life. The mean total frequency score was 19.82 for children with comparable seizure characteristics who had been treated for an average of 4 years [3]. The State–Trait Anxiety Inventory for Adults (STAI) is a 20-item questionnaire that assesses parental anxiety. Each statement has four possible responses from ‘‘almost never’’ to ‘‘almost always.’’ Scores range from 20 to 80. Higher scores are associated with increased anxiety. Only the Trait Anxiety Scale was administered as it focuses on more general and longstanding anxiety. Mean scores for working adults are 34.89 (SD ¼ 9.2) for males and 34.79 (SD ¼ 9.2) for females. 2.4. Covariates In addition to the parental score on the STAI, other covariates included: severity of comorbid conditions, seizure control, SES, years since diagnosis, number of medications, MRI, ethnicity, gender, and age of the child. Severity of comorbid conditions was based on four categories including: children with no other diagnosed conditions, children diagnosed with mild learning and/or behavioral problems, children with moderate learning and behavioral problems who required significant interventions within the school setting, and children with severe disabilities that significantly interfered with ambulation, communication, and learning. 2.5. Statistics Correlation coefficients were employed to determine the strength of association between the total frequency score on the Impact of Childhood Illness Scale and the covariates. t tests and one-way ANOVAs were used to examine differences in quality of life scores and anxiety. TukeyÕs HSD was used to explore any differences based on multiple comparisons. A regression analysis was performed with the dependent variable consisting of the total mean score on the Impact of Childhood Illness Scale and predictor variables consisting of all of the covariates.
3. Results Total frequency score from the Impact of Childhood Illness Scale was 18.45 (SD ¼ 13.0, range 0–56). Correlations between total frequency score and other variables are found in Table 1.
J. Williams et al. / Epilepsy & Behavior 4 (2003) 483–486 Table 1 Correlations between total frequency scores on the Impact of Childhood Illness Scale and the covariates
485
Table 3 Differences in quality of life based on severity of comorbid conditions, level of parental anxiety, and seizure control
Impact of Childhood Illness Scale 0.48a 0.63a 0.42a )0.16b 0.31a 0.45a )0.02 )0.06 )0.05 )0.08
Parental anxiety Severity of comorbid conditions Seizure control Socioeconomic status Years since diagnosis Number of AEDs MRI Ethnicity Gender Age
Severity of comorbid conditions No other comorbid conditions (n ¼ 59) Mild learning/behavior problems (n ¼ 49) Moderate learning/behavior problems (n ¼ 57) Severe disabilities (n ¼ 35)
Correlation is significant at the 0.01 level. b Correlation is significant at the 0.05 level.
Table 2 Results from stepwise regression analysis concerning variables associated with quality of life in children with epilepsy
Severity of comorbid conditions Parental anxiety Seizure control Number of AEDs
8.53 15.98 22.75 31.63
a
a
Predictor
Impact of Childhood Illness score
Impact of childhood illness R2
t
P
0.39 0.50 0.55 0.57
8.1 6.8 3.4 3.1
<0.01 <0.01 <0.01 <0.01
The stepwise regression analysis suggested that severity of comorbid conditions, parental anxiety, seizure control, and number of medications were significantly associated with quality of life for these children (Table 2). The model accounted for 57% of the variance. A t test did not indicate significant differences (t ¼ 0:74, P > :46) in quality of life between males (mean ¼ 17.8) and females (19.14). One-way ANOVAs indicated that quality of life significantly decreased with increasing severity of comorbid conditions, increased level of parental anxiety, and decreased level of seizure control (Table 3). There were no differences between seizure types and quality of life with the exception of the mixed seizure type, which was associated with significantly diminished quality of life. The mean level of parental anxiety was 38.58 (SD ¼ 10.7, range ¼ 20–72) which falls within the normal range. Parental anxiety did not differ by seizure type or by level of seizure control. Anxiety of parents whose children had no comorbid conditions was significantly lower than that of parents whose children had mild, moderate, or severe disabilities.
4. Discussion Overall quality of life scores for children with chronic epilepsy were similar to previous findings involving use of the Impact of Childhood Illness Scale [3]. Like
Level of parental anxiety STAI score 6 32 (n ¼ 76) STAI score 33–43 (n ¼ 57) STAI score P 44 (n ¼ 67)
12.01 18.93 25.34
Seizure control Good Moderate Poor
14.99 21.25 28.53
a Parent scores were divided based on normative data. Group 1 ( 6 32) comprised scores below the mean; Group 2 (33–43), scores at the approximate mean and within one standard deviation above; and Group 3 ( P 44), scores at least one standard deviation above the mean.
previous studies, both condition severity, involving the presence of other disabilities, and poor seizure control were associated with decreased quality of life. Consistency of these findings would suggest that measurement of quality of life and targeted interventions are most useful and appropriate for families whose children have uncontrolled epilepsy and comorbid disabilities. In addition to severity of condition and illness variables, parental anxiety was found to be significantly associated with decreased quality of life. The relationship between parental anxiety and quality of life is not clearly understood. Highly anxious parents may be more likely to perceive higher risks for their children and misinterpret information about their childÕs condition. Previous findings suggest that parental anxiety may have an impact on parenting behaviors. In a study of children with epilepsy versus those with diabetes, changes to more dependent sleeping arrangements were found in children with epilepsy whose parents were worried over nocturnal seizure occurrence. Although it was unknown whether the changes in sleeping arrangements might have resulted in better health protection for the child, transmission of parental anxiety to the child concerning health status was postulated to be a psychological risk of this behavioral change [11]. Further research is needed to determine whether behavioral changes associated with parental anxiety interfere with the process of parent–child separation and independence. Findings from the present study suggest that families most vulnerable to reduced quality of life are those in which a child has poorly controlled epilepsy, comorbid
486
J. Williams et al. / Epilepsy & Behavior 4 (2003) 483–486
disabilities, and increased parental anxiety. Targeted interventions and support may be critical for these families. In a pilot study, parental anxiety was significantly decreased after exposure to a family-oriented program involving both education and counseling [12]. Respite care, parent support groups, increased education about seizure risks and psychosocial development, and greater access to mental health services may be beneficial.
References [1] Baker G. Assessment of quality of life in people with epilepsy: some practical implications. Epilepsia 2001;42:66–9. [2] Miller V, Palermo TM, Grewe S. Health-related quality of life in children with epilepsy. Presented at the 8th Florida Conference on Child Health Psychology, Gainesville, FL, 2001. [3] Hoare P, Mann H, Dunn S. Parental perception of the quality of life among children with epilepsy or diabetes with a new assessment questionnaire. Qual Life Res 2000;9:637–44.
[4] Sabaz M, Cairns DR, Lawson JA, Bleasel AF, Bye AME. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia 2001;42:621–8. [5] Pal DK, Chaudhury G, Das T, Sengupta S. Predictors of parental adjustment to childrenÕs epilepsy in rural India. Child Care Health Dev 2002;28:295–300. [6] Coulter DL. The psychosocial impact of epilepsy in childhood. Child Health Care 1982;11:48–53. [7] Shore C, Justin J, Musick B, Dunn D, McBride A, Creasy K. Psychosocial care needs of parents of children with new-onset seizures. J Neurosci Nurs 1998;30:169–74. [8] Hollingshead AB. Four Factor Index of Social Status, Author, New Haven, CT, 1975. [9] Hoare P, Russell M. The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Dev Med Child Neurol 1995;37:689–96. [10] Spielberger C, Gorsuch R, Lushene R. STAI Manual. Palo Alto, CA: Consulting Psychologist Press; 1970. [11] Williams J, Lange B, Sharp G, et al. Altered sleeping arrangements in pediatric patients with epilepsy. Clin Pediatr 2000;39:635–42. [12] Lewis MA, Hatton CL, Salas I, Chiofalo N. Impact of the childrenÕs epilepsy program on parents. Epilepsia 1991;32:365–74.