Journal of Neuroscience Nursing:
Chronic Sorrow and Coping in Families of Children with Epilepsy
Hobdell, Elizabeth F.; Grant, Mitzie L.; Valencia, Ignacio; Mare, Jane; Kothare, Sanjeev V.; Legido, Agustin; Khurana, Divya S.
Questions or comments about this article may be directed to Elizabeth F. Hobdell, PhD CRNP CNRN, at Elizabeth.Hobdell@tenethealth.com. She is a nurse practitioner in child neurology at St. Christopher's Hospital for Children, Philadelphia, PA.
Mitzie L. Grant, PhD, is a neuropsychologist in child neurology at St. Christopher's Hospital for Children, Philadelphia, PA.
Ignacio Valencia, MD, is a child neurologist at St. Christopher's Hospital for Children, Philadelphia, PA.
Jane Mare is an epilepsy counselor at St. Christopher's Hospital, Philadelphia, PA.
Sanjeev V. Kothare, MD, is a child neurologist at St. Christopher's Hospital, Philadelphia, PA.
Agustin Legido, MD PhD, is chief of child neurology at St. Christopher's Hospital, Philadelphia, PA.
Divya S. Khurana, MD, is a child neurologist at St. Christopher's Hospital, Philadelphia, PA.
Epilepsy, a common problem in child neurology, affects the entire family. There is a potential for such psychosocial consequences as parental chronic sorrow and alterations in coping. In this study, 67 parents completed brief questionnaires about their sorrow and coping styles. Results demonstrated chronic sorrow as measured by the Adapted Burke Questionnaire (10.45±7.9). Interestingly, the total score was not significantly different between parents of children with refractory and nonrefractory epilepsy or parents of children with comorbid or without comorbid conditions. Selection of the individual item disbelief, however, was significantly increased in parents of children with nonrefractory epilepsy, and selection of the item anger was significantly increased in parents of children with comorbid conditions. Parental coping styles were similar to those reported in the normative data for the instrument used, the Coping Health Inventory for Parents (CHIP). The correlation between chronic sorrow and coping was significant between the grief component of sorrow and Coping Pattern II of the CHIP. Implications for practice include earlier identification of parental feelings of sorrow and coping styles, which may contribute to a positive outcome.
Epilepsy is one of the most common problems encountered in child neurology (Hauser, Annegers, & Rocca, 1996). Seizure disorders have a variable age of onset and multiple etiologies. Because epilepsy usually begins in childhood, it affects the entire family (Hartshorn & Byers, 1994). The course of a child's seizures, potential complications, and long‐term prognosis are often unknown. The subsequent uncertainty resulting from these factors, coupled with the unavoidable stigma attached to the diagnosis of epilepsy, results in anticipated and unanticipated psychosocial consequences for parents and children. Some of these consequences may be influenced by individual perceptions.
Parents' perceptions of their children are often based on images of the ideal child formulated during pregnancy. That image of an ideal child may be lost when a child is diagnosed with epilepsy. In part, this loss may result from the continued stigma associated with this diagnosis (Pal, 2003). Parental stress and feelings of sorrow and grief may result. Contending with the diagnosis of epilepsy and acting to overcome the inherent problems associated with this medical condition form the basis for a parent's ability to cope with the care of a child with epilepsy. However, psychological factors (e.g., sorrow) may either foster or inhibit an accurate perception of an event or situation (Kruglanski, 1989). Maladaptive perceptions may then develop in response to a medical condition such as epilepsy based on parents' cognitive and psychosocial resources, and these maladaptive perceptions may then impact the patient's outcome. This study was designed to compare parental coping and chronic sorrow in parents of children with epilepsy.
King (1981) described individuals as personal systems who interact in a variety of transactions with other individuals. Self and perception are two facets of the personal system. In this study, self is represented by the parents while perception is represented by chronic sorrow and coping.
The inevitable loss of the image of an ideal child, intensified by the diagnosis of a child with epilepsy, may initiate a mourning process that varies in intensity, rate, and duration (Dyson & Fewell, 1986; Phillips, 1991; Zamerowski, 1982). Kennedy (1970) suggests that grief lasting longer than 2‐3 months constitutes chronic sorrow. Chronic sorrow, which was first described by Olshansky (1962), is the cyclical, recurring grief or sadness of parents and caregivers that occurs with different degrees of intensity at various times during the lifetime of an individual with a serious or chronic condition. Terms such as chronic grief are also used to describe this phenomenon (Hummel & Eastman, 1991).
Components of chronic sorrow have been documented in parents of children with mental retardation (Wikler, Wasow, & Hatfield, 1981), developmental disability (Mallow & Bechtel, 1999), prematurity (Fraley, 1996; Hummel & Eastman, 1991), Down syndrome (Damrosch & Perry, 1989), neural tube defects (Burke, 1989; Hobdell, 2004; Hobdell & Deatrick, 1996), and chronic illnesses (Gravelle, 1997; Johnsonius, 1996; Lownes & Lyne, 2000; Northington, 2000; Teel, 1993). The components have also been documented in caregivers of adults with Parkinson's disease (Hainsworth, Eakes, & Burke, 1994; Lindgren, 1996), multiple sclerosis (Hainsworth, 1995, 1996), chronic mental disability (Hainsworth, Busch, Eakes, & Burke, 1995), and cancer (Hainsworth et al., 1994). Regardless of onset, patient age, or circumstances involved, chronic sorrow is an important variable to consider. To our knowledge the presence and incidence of chronic sorrow has not been investigated in parents of children with epilepsy.
Concurrent with parental sorrow is the need to cope with the care of the child with epilepsy. Coping has been defined as dealing with and attempting to overcome difficulties (Merriam‐Webster, 1986). Various components of coping may include problem‐focused strategies and cognitive‐ and emotion‐focused solutions, including wishful thinking and avoidance (Miller, Gordon, Daniele, & Diller, 1992). The former are deemed more positive, while the latter are felt to be more negative or unhelpful.
Coping with the care of a child with a chronic health condition occurs as parents must cognitively and behaviorally manage the stress of comprehending the medical condition, adjusting to the diagnosis, and providing appropriate care to meet the needs of the child and family. Miller and associates (1992) evaluated maternal stress and types of coping and found increased distress in mothers of children with a disability. Increased distress was associated with emotion‐focused coping strategies, while less distress was associated with problem‐focused coping strategies. One study has specifically focused on coping in parents of epileptic children. Austin and McDermott (1988) correlated several components of coping with parental attitude. They found a positive relationship among such factors as the ability to maintain family integration, optimistic definition of a situation, social support, self esteem, and psychological stability.
Ryan, Speechley, Levin, and Stewart (2003) noted that in addition to seizure control, families who used effective adaptive strategies, such as methods to reduce the burden of illness, had a better quality of life. Additional research has also examined adaptation, burden of care, and stigma as variables impacting stress and the ability to cope with the diagnosis of epilepsy. For example, Strang (1990) identified the increased burdens for individuals with epilepsy, such as concomitant cognitive impairments, which impede age‐appropriate adaptation. Austin, MacLeod, Dunn, Shen, and Perkins (2004) noted that negative attitudes about epilepsy and perception of stigma contributed to poor adaptation to epilepsy. Austin and associates also suggested that family adjustment is more strongly related to parental perception than to actual seizure control. However, Shore, Austin, and Dunn (2004) indicated that mothers of children with epilepsy reported more stress than mothers of children with other chronic illnesses. They concluded that adaptation is complex for parents of children with epilepsy.
Concurrent with parental sorrow is the need to cope with the care of the child with epilepsy.
Coping with chronic sorrow is described in several studies. Damrosch and Perry (1989) noted that mothers scored higher on the coping subscales for expression of negative affect, self‐blaming, special feelings, and communication of feelings than fathers. They also noted that as sorrow increased, coping behaviors increased. Hainsworth et al. (1994), Hainsworth (1996), Eakes (1995), Hainsworth et al. (1995), and Lindgren (1996) reported on the use of action, cognitive, interpersonal, and emotional coping methods in their studies. Plowey, Mossey, Villanueva, Livingston, and Legido (2000) used the Coping Health Inventory for Parents to assess the effectiveness of coping behaviors in the Hispanic population. In this study, parents of children with epilepsy demonstrated an increased use of all coping patterns when compared to the national sample. No correlation between coping and chronic sorrow has been reported in parents of children with epilepsy.
This study was designed to use brief, simple report measures to investigate the presence of chronic sorrow in parents of children with epilepsy; to identify potential coping strategies that these parents may be using; and to determine whether there is a relationship between coping and chronic sorrow in these parents. This sample included parents of the following: children with refractory epilepsy; children with well‐controlled epilepsy; children with comorbid conditions; and children without comorbid conditions. We also analyzed the data to determine differences in coping and chronic sorrow depending on whether the diagnosis was made long ago or more recently (fewer than 2.5 years).
Methods and Materials
Parents of children with epilepsy who attended the outpatient neurology clinic at St. Christopher's Hospital for Children from March 2003 to April 2004 were invited to participate. Approval was obtained from the hospital's institutional review board. This study included children between 2 and 18 years of age who were diagnosed with epilepsy (occurrence of at least two unprovoked seizures) for at least 3 months. Parents were asked to participate in the study during a scheduled office visit. After obtaining informed consent, the instruments described below were administered. Whenever possible, instrument measures were completed during the office visit; however, parents were also permitted to complete the materials at home and return them by mail when there were time constraints. Information regarding the child's seizure frequency, epilepsy syndrome, length of time since diagnosis, medications, and presence of comorbid conditions were obtained for each subject.
The Coping Health Inventory for Parents (CHIP) developed by McCubbin, McCubbin, Nevin, and Cauble in 1981 was used to measure parental coping strategies. This validated instrument is designed to assess parents' appraisal of behaviors currently in use to manage family life when they have a seriously ill or chronically ill child. The CHIP is a parental self‐report instrument consisting of a checklist of 45 specific behaviors. Parents were asked to indicate the presence of a behavior and how helpful the behavior is in their particular family situation (0 = not helpful, 1 = minimally helpful, 2 = moderately helpful, and 3 = extremely helpful). Parents also had the option of indicating whether they do not cope in this manner because they either choose not to or because it is not possible. The CHIP has three subscales that represent different positive coping patterns. The higher the coping score, the increased use of coping. Increased use of coping is interpreted as indicative of increased stress. The following is a description of each of the three coping patterns:
* Coping Pattern I—previously identified as Maintaining Family Integration, Cooperation, and an Optimistic Definition of the Situation—is made up of 19 items reflecting behaviors that focus on the family and the parent's view on life and the child's illness. The range of scores for this pattern is 0‐57. Items assess parental perceptions of the importance of keeping the family together, encouraging cooperation, involvement in their children's lives, and fostering independence in family members.
* Coping Pattern II—identified as Maintaining Social Support, Self Esteem, and Psychological Stability—is composed of 18 items reflecting parental efforts to have a personal sense of wellbeing by obtaining social support from others, maintaining feelings of self‐esteem, and dealing with psychological tensions and strains. The range of scores for this pattern is 0‐54.
* Coping Pattern III—identified as Understanding the Medical Situation through Communication with Other Parents and Consultation with Medical Staff—is composed of eight coping behaviors focusing on the interface between parents and healthcare personnel, as well as other parents in a similar situation. The range of scores for this pattern is 0‐24. The behaviors reflect parental efforts to understand and master health information needed to cope with the illness.
Parents received scores for the three coping patterns from the CHIP. Items were summed and divided by the number of items in each subscale. With regard to reliability, McCubbin et al. (1981) previously reported Cronbach's alpha of 0.79 for Coping Patterns I and II and 0.71 for Coping Pattern III. In our study, a Cronbach's alpha of 0.922 was obtained for the entire instrument.
The Adapted Burke Questionnaire (ABQ) was used to assess the presence of chronic sorrow in the parents of children with epilepsy recruited for this study. The ABQ was adapted from Burke's (1989) Chronic Sorrow Questionnaire (CSQ) and consists of two components. This study reports only the first component, which includes a grid of the eight most frequently reported mood states from the CSQ (grief, shock, anger, disbelief, sadness, hopelessness, fear, and guilt). On the ABQ, parents are asked to indicate the intensity of these mood states on a 4‐point Likert scale (3 = most intense to 0 = not intense). The range of scores for the ABQ is 0‐24. A higher score indicates increased sorrow. Content validity has been previously determined. Previous reliability has demonstrated a Cronbach's alpha of 0.90 for parents, 0.89 for fathers, and 0.91 for mothers (Hobdell, 2004). The Cronbach's alpha for this study was 0.935 for parents. Measures of difference and correlation were performed with Statistical Package for the Social Sciences (SPSS, Inc., Chicago, IL).
Informed consent was obtained from 97 parents of children with epilepsy. Of these, 67 completed all instruments.
Characteristics of the Children
The mean age of children with epilepsy was 9.7 years (range = 3 months to 18 years). Forty‐six percent (31) were female and 54% (36) were male. Ninety‐four percent (63) spoke English as their primary language, while 4.5% (3) had Spanish as their primary language. English questionnaires were used for all parents.
The mean age of seizure onset was 4 years. Fortyfour of 67 children (66%) had nonrefractory epilepsy, 20 of 67 had refractory epilepsy (30%), and 3 of 67 (4%) had newly diagnosed epilepsy (less than 6 months since diagnosis). Forty‐four children had been diagnosed with epilepsy for 2.5 years or longer (range = 2.6‐18 years), and 17 children had been diagnosed between 6 months and 2.5 years. The three newly diagnosed subjects were not included in inferential statistics. Refractory epilepsy was defined as failure to control seizures with at least two appropriate antiepileptic drugs (AEDs; Kwan & Brodie, 2000).
The average number of previously prescribed AEDs for the entire group was 3.1, while the number of AEDs currently in use was 1.3. For children with refractory epilepsy, a total of 6.2 AEDs had been used in the past, while children with nonrefractory epilepsy had used a mean of 1.9 AEDs. The number of AEDs currently used was 2.2 for the children with refractory epilepsy and 1.0 for children with nonrefractory epilepsy.
The mean number of seizures per month was 42 (range = 0‐200) for children with refractory epilepsy and 1.3 (range = 0‐30) for children with nonrefractory seizures. The time since diagnosis was significantly different (t = −3.02, p = .004), with the refractory epilepsy patients having a longer time since diagnosis.
Comorbid diagnoses included the presence of cerebral palsy, attention deficit hyperactivity disorder, learning disabilities, global developmental delay, mental retardation, and psychiatric conditions (e.g., depression or aggressive behaviors). Thirty‐four percent of the children (23 of 67) had no comorbid diagnosis, while 22% had one, 39% had two, and one patient had three comorbid diagnoses. Twenty of 44 (46%) children with comorbid diagnoses were in the refractory epilepsy group. All patients without comorbid diagnoses had nonrefractory epilepsy.
Chronic Sorrow Results
A moderate amount of chronic sorrow was present in parents of children with epilepsy, as measured by the total ABQ score, which yielded a mean score of 10.45 (the maximum score of 24 reflects the most intense sorrow) and a standard deviation of 7.9. The total score from the ABQ, reflecting the moodstate component of chronic sorrow, was not significantly different between parents of children with refractory epilepsy and parents of children with nonrefractory epilepsy (t = .90, p = ns). However, analysis of the eight individual items of the ABQ revealed a statistically significant difference in disbelief (reluctance to believe) between the parents of children with refractory and nonrefractory epilepsy, with greater disbelief reported in the group dealing with nonrefractory epilepsy (t = 2.36, p = .022; see Table 1).
For parents of children with and without comorbid conditions, there was no significant difference on the total ABQ score (t = 0.76, p = ns). However, as all children with refractory epilepsy included in this sample also had one or more comorbid conditions, the data were further analyzed using three groups:
1. parents of children with refractory epilepsy (n = 20)
2. parents of children with nonrefractory epilepsy with comorbid conditions (n = 23)
3. parents of children with nonrefractory epilepsy only (n = 20).
There was a significant difference in feelings of disbelief between the three groups (f = 4.23, p = .019), although there were no significant group differences for the total ABQ score (f = 1.78, p = .17). Parents of children with nonrefractory epilepsy and comorbid diagnoses had greater disbelief than parents of children with refractory epilepsy (t = 1.017, p = .18). The parents of children with nonrefractory epilepsy, with and without comorbid disorders, did not differ significantly from each other. The data also revealed a difference that approached clinical significance between the groups with regard to feelings of anger (f = 3.037, p = .056), with parents of children with nonrefractory epilepsy and comorbid diagnoses reporting much greater anger than parents of children with epilepsy only (t = .89, p = .057). The parents of children with comorbid diagnoses (whether with refractory or nonrefractory epilepsy) did not differ significantly from each other.
Results of an analysis of variance did not reveal any significant differences in the ABQ variables as a result of time since diagnosis (<2.5 years versus >2.5 years). In addition, correlational analyses did not reveal any significant relationship between age at time of diagnosis and the ABQ variables.
In analyzing the entire sample of parents of children with epilepsy, there was a significant positive correlation between the total ABQ score (used to measure chronic sorrow) and one of the three parental coping patterns of the CHIP, namely, the one identified as Coping Pattern II: Maintaining Social Support, Self‐Esteem, and Psychological Stability (Coping Pattern I: r = .19, p = .09; Coping Pattern II: r = .24, p = .04; and Coping Pattern III: r = .08, p = .5). Of the eight ABQ items, grief (r = .28, p = .03) was most highly correlated with this coping pattern in the total sample. Further analysis comparing parents of children with and without comorbid diagnoses revealed a similar correlation between Coping Pattern II and grief (r = .35, p = .02) in parents of children with comorbid diagnoses.
The means and standard deviations for the three different coping patterns of the CHIP completed by the parents in this study were as follows: Coping I, 37.4 ± 9.7; Coping II, 34.96 ± 9.95; Coping III, 19.9 ± 5.8. These values are very similar to the normative data obtained from parents of other chronically ill children (McCubbin et al., 1981). Statistical analysis did not reveal any significant differences in coping patterns between parents of children with or without refractory epilepsy or parents of children with or without comorbid diagnoses, nor was there a significant difference based upon length of time since diagnosis (diagnosed <2.5 years [n = 17] or >2.5 years [n = 44]).
In this study, a moderate degree of chronic sorrow was identified in parents of children diagnosed with epilepsy for 1 year or more. Interestingly, the severity of epilepsy did not significantly alter feelings of chronic sorrow: results were similar in parents of children with refractory epilepsy and parents of children with fairly well controlled, nonrefractory seizures. It is noted that the total scores on the ABQ test measure obtained in our sample of parents of children with epilepsy were higher than those reported in a previous study of parents of children with congenital neural tube defects, where the mean score reported by fathers was 4.69 and by mothers was 7.07 (Hobdell, 2004). Reported feelings of chronic sorrow were very similar when we compared parents of children who were diagnosed fairly recently (< 2.5 years) to parents of children who had been diagnosed for much longer periods of time (2.5‐18 years since seizure onset). There was no difference in parental sorrow based upon the child's age at the time of diagnosis. Our results would imply, therefore, that the intensity of chronic sorrow is not dependent on disease severity. We speculate it may depend on the mere presence of the disorder itself.
In terms of chronic sorrow, the parents in our study reported similar feelings of sadness, grief, helplessness, guilt, fear, and shock. Interestingly, there was a significant difference in feelings of disbelief, with parents of children with well‐controlled seizures who also had concomitant or comorbid disorders reporting much stronger feelings of disbelief than parents of children with intractable seizures who also had additional concomitant disorders. In addition, the same group of parents reported more intense feelings of anger, particularly in contrast to parents of children with well‐controlled seizures without other medical conditions. Parents of children with comorbid conditions did not differ significantly, regardless of their child's degree of seizure control. The specific reasons for increased feelings of anger and disbelief in this particular group are unclear and could not be attributed to individual variables, such as the age at which the child was diagnosed nor the time since diagnosis, because these variables did not differ significantly between the groups.
We hypothesize that the differences in components of sorrow between our three groups of parents are likely multifactorial and reflect continuous stress associated with various inherent uncertainties faced by families of individuals with epilepsy, such as the inability to anticipate seizures, variability of seizures, unwanted side effects of medications, and uncertain prognosis. Our results suggest that the multifactorial character of sorrow is particularly true for parents of children who also have other concerns, such as learning problems, developmental delays, and emotional or behavioral issues. These emotions are not dissimilar to those identified not only in parents of children with severe disabilities, but also in a subgroup of parents of children with diabetes, in which children appear well but have potential for life‐threatening situations (Lownes & Lyne, 2000).
The current data from the CHIP, on awareness and use of various coping strategies and patterns among parents of children with epilepsy, is very similar to previously published data from parents with other chronically ill children. In our sample, we did not identify significant differences in coping patterns used by parents of children with refractory epilepsy compared to those used by parents of children with well‐controlled seizures, nor was there a difference in parental use of these coping strategies based upon the presence or absence of comorbid disorders or time since diagnosis.
However, we did identify a significant relationship between the occurrence of chronic sorrow—specifically, feelings of grief—and the use of Coping Pattern II from the CHIP. This result indicates that parents of children with epilepsy who are experiencing more intense grief and sorrow are more likely to report the frequent use of a specific group of coping strategies. These strategies include seeking and obtaining social support from others, making attempts to deal with psychological tensions and strains, and attempting to maintain feelings of self‐esteem. This result is similar to that of a previous study comparing coping patterns in families of children with cerebral palsy, which concluded that from a theoretical perspective coping behaviors are developed in response to stressful situations and, consequently, one would expect parents in high‐conflict families to record greater use of coping behaviors (McCubbin et al., 1981).
We anticipated that a higher degree of chronic sorrow in parents would result in more frequent use of coping behaviors because this correlation is perceived to reflect an active effort to adjust and adapt to one's situation. In our sample, the specific coping pattern (II) indicates that at times of increased sorrow, parents of children with comorbid diagnoses seek external sources of support. These results are similar to those reported by Damrosch and Perry (1989), who note an increase in coping with an increase in sorrow. Austin and McDermott (1988), in a study comparing coping (as measured by the CHIP) to parental attitude, noted that improved attitude resulted in increased use of Coping Patterns I and II. They suggested that the increased use of Coping Pattern II strategies reflected a positive attitude of sharing feelings with others.
Use of coping strategies in families of children with cystic fibrosis, also as measured by the CHIP (McCubbin, Thompson, & McCubbin, 2001), indicated that parental use of Coping Patterns II and III was associated with gains in a child's height and weight index and with improvement in the pulmonary function index. This observation leads us to hypothesize that specific interventions to alter coping strategies (such as Coping Pattern III) might subsequently decrease feelings of grief and sorrow, assist with adjustment, and thus improve parental perceptions.
Implications for Practice
Results indicate that brief, easy‐to‐use pen‐andpaper report measures appear to be very useful clinical screening tools. These report measures effectively identify issues of concern in families of children with epilepsy, including potential feelings of distress and sorrow in caregivers and their awareness and use of various coping and adjustment strategies. The ability to quickly and easily obtain this information may help healthcare providers identify families in need and implement appropriate interventions, with the anticipation of contributing to a more positive outcome for families of children with epilepsy.
This study was limited by the inability to evaluate coping in the Spanish‐speaking population and compare results to previous results from Plowey et al. (1999). It also would have been helpful to differentiate mothers and fathers in the comparisons. Previous research has demonstrated gender differences in chronic sorrow between mothers and fathers (Hobdell, 2004). A larger sample size might have provided more information about the specific components of sorrow.
Additional research is needed to determine whether there is a critical time period following diagnosis in which appropriate educational and supportive interventions may positively impact individual and family adjustment and potentially alter not only parental perceptions about epilepsy, but also the subsequent quality of life for children and their families.
This study identified the presence of moderately intense feelings of chronic sorrow in parents of children with epilepsy, both nonrefractory and refractory. It is important for healthcare providers to recognize that this emotional response may negatively impact parental, child, or family adjustment and adaptation, as well as their ability to effectively identify and implement coping strategies necessary for maintaining or improving quality of life.
This study was supported by a grant from the St. Christopher's Foundation: Grant No. 139. We are grateful to Dr. M. Heverly for assistance with statistical analyses.
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