Fam Proc 22:53-59, 1983

The Family and the Child with EpilepsyMICHAEL FERRARI, PH.D.a

WENDY S. MATTHEWS, PH.D.b

GABOR BARABAS, M.D.b

aDepartment of Individual and Family Studies, College of Human Resources, University of Delaware, Newark, Delaware 19711.bUniversity of Medicine and Dentistry of New Jersey-Rutgers Medical School.

Reports documenting psychosocial epiphenomena of chronic illness in individuals with that illness have been commonin recent years. Few studies, however, have been concerned with how illness might affect the family. Those that haveappeared in the literature often lack critical controls (i.e., control groups) and often fail to investigate possible linksbetween illness-specific variables (i.e. chronicity, inhibition of mobility) and psychosocial outcomes on the family. Thepresent study of 45 families focused on how children with epilepsy affect their families' functioning relative to familieswith a child with diabetes and families with no chronically ill members. The results suggest several areas of child andfamily adjustment (i.e. child self-concept, family communication, family cohesion) in which the families of epilepticchildren have great difficulty. Implications of these results are discussed with regard to differential influences of variouschronic illnesses on families and family-based preventive and remedial treatment programs.

Many reports of frequent psychosocial complications following the onset of chronic illness in an individual can be foundin the research and clinical literature. Less frequent are reports focusing upon the possible ramifications of the illness onthose associated with the chronically ill person such as the person's family or the wider substructure of friends andacquaintances. Although studies of the impact of illness on the family do exist, many are fraught with methodologicalinadequacies such as a failure to include comparable data from control groups (13). Moreover, a prevailing assumption isfrequently made in these studies that it is the presence of the chronic illness itself that makes a difference in the family'sinteractional patterns (6, 16) rather than the complex relationships between possibly unique physical and psychosocialdimensions of a disorder (e.g., visibility, restriction of social interaction) and the overall adjustment of the ill member andhis or her family.

A survey of the empirical literature reveals a great variability in family adjustment outcomes both within and acrosschronic illnesses of various types. For example, in studies of nonspecific chronically ill children and their families, thenumbers of parents reporting emotional disturbance have been as high as 56 per cent (12) with physically handicappedchildren to an isolated few in a study of parents of mentally retarded youngsters (4). Data on siblings of chronically illchildren have been equally variable, ranging from investigations in which as many as 25 per cent (1) to 64 per cent (2) ofthe sample were rated as having serious psychological or behavioral difficulties to studies reporting behavioral orpsychological problems in only a small percentage of the siblings (3). With respect to specific types of chronic illness, fewempirical studies exist to document claims of illness-specific family adjustment problems.

In some of our own work focusing on a group of epileptic children (11), we hypothesized that specific links would beuncovered between various psychosocial variables and the phenomena of epilepsy. Focusing upon the uniqueunpredictability of a seizure occurrence, we reasoned that epileptic children would be acutely aware of their own lack ofcontrol over their condition, would have special difficulties in developing coping mechanisms that could serve the widerange of circumstances under which their seizures might occur, and would generalize their feelings of helplessness to otheraspects of their lives. The overall findings of this investigation strongly support our hypotheses, demonstrating that epilepticchildren are indeed vulnerable to psychosocial complications unique to their illness. Other factors uncovered in the studysuggest that illness-specific adjustment problems extend beyond the individual ill child into the realm of family interaction.The present paper is a descriptive report of findings on the adjustment of the family of a child with seizures relative tofamilies of children with diabetes and to families in which no chronically ill children are present.

Method

SubjectsForty-five children, aged 6.58 to 12.83 years, and their families were used as the subjects of this study. The total sample

was divided into three groups of equal number: 15 children with diagnosed neuroepileptic disorders; 15 children withdiagnosed diabetes; and 15 children who had no known chronic illness nor daily medication requirement. The rationale fora chronically ill control group was based on the need to rule out the possibility that a chronic physical problem requiring a

_____________________________________________________________________________________________________________

1

daily regimen of medication (and thus serving as a constant reminder to the child and family of the child's illness) couldaccount for the intra-familial psychosocial difficulties.

Each of the three groups was matched as closely as possible on the following variables: chronological age, age at illnessonset (for the diabetic and epileptic groups), sex, socioeconomic status, and academic standing. All subjects with mentalretardation, secondary medical problems, or gross physical impairments were excluded from the study. The averagechronological age of the subjects was 9.96 years for epileptic children, 9.82 years for the diabetics, and 9.87 years for thenonchronically ill children. The mean length of illness was 3.05 years for the children with seizures and 2.86 years for thediabetic youngsters.

Most families in the study were two-parent families. Two sets of parents in the epileptic group were separated, with onepair seeking a divorce. One set of parents in the diabetic group and one set in the nonchronically ill group were also livingseparately at the time of the study. The average family size (including parents) was 4.97. No difference in family size wasfound between the groups.

ProcedureA researcher, blind to the diagnosis of the children prior to his visit, went to the family's homes in the early evening

hours. During the visit the researcher administered several instruments to the child and his or her family'. These instrumentsincluded: the Draw-a-Person test, the Multi-Dimensional Measure of Children's Perceptions of Control (5), and thePiers-Harris Children's Self-Concept Scale (15) given to the chronically ill and healthy control children, and the RochesterAdaptive Behavior Inventory (RABI) given to the two parents. The RABI is a two-to-three hour clinical interviewinstrument in which a child's behavior can be reliably operationalized in terms of being "at risk" or "no risk" for psychelogicmaladjustment. The format of the RABI interview consists of a series of open and closed questions relating to the child'sbehavior and adjustment at home with the family, the child's relationships with family members and peers, and the overallfunctioning of the family unit. The questions are posed to the parents in a conversational manner permitting the parent thefreedom to elaborate on responses as necessary. Parental responses are categorized by the interviewer, not the parent, so asto eliminate potentially tendentious responses (10, 14). To ensure the accuracy of the coding for the RABI form, before theonset of the study the interviewer worked with another researcher regarding the follow-up questioning sometimes necessaryfor the coding of ambiguous parental responses. In addition, a second researcher went along to the homes of two of thesubjects to check for coding reliability. Interrater reliability was high, with exact agreement occurring on 88.35 per cent ofthe items, and the percentage of disagreements of a single point on the five-point RABI scales was 10.4.

ResultsTwo of the four instruments administered, the RABI interview and the Piers-Harris Children's Self-Concept Scale,

yielded data relevant to family function.

Based on 3×2×2 (group × sex × age) Analyses of Variance (ANOVA) for the individual items constituting the RABIinterview instrument, a large number of significant main effects of group were obtained. Posthoc analyses (Duncan'sMultiple Range Test) were conducted to determine the pattern of group differences. The group differences relevant to thechild and his or her family that were obtained on the analysis of the RABI interview instrument are presented in Table I.

Table 1Differences Between Children with Seizures and Two Control Groups as Reported by Their Parents

ITEM GROUPSb SIGNIFICANCE LEVEL

Frequency of assaultive behaviour toward parents E > D & N .05

Closeness of family E < D & N .02

Content of parent-child communications E = specific issues, problems .0003

D & N = more general topics

With other children the same age, is your child a E > D & Na .0001

leader or follower?

Initiating activities within the family E < D & N .02

Frequency of complainteverybody picks on me, E > D & N .003

nobody loves me

Laugh and smile serious events such as death E > D & N .004

or illness or accidents

_____________________________________________________________________________________________________________

2

Likely to act babyish or immature E > D & N .03

Periods of particular emotional upset E > D & N .05a Epileptic children were more often rated as followers than leaders relative to the other two groups.b E = epileptic children, D = diabetic children, and N = nonchronically ill youngsters.

It can be seen from the table that children with seizure disorders are reported by their parents to differ from the other twogroups in a multiplicity of ways. Most closely related to family issues are items dealing with the epileptic child's behaviorwithin the family context, with family closeness, and with family communication. Concerning the first point, children withseizures are reported by their parents to express complaints of personal rejection more frequently ("Everybody picks on me,nobody loves me"), are more likely to act babyish or immature, to have frequent periods of emotional distress, and to have ahistory of assaultive behavior toward the parents. Regarding the issues of family cohesion, families with children who haveepilepsy report themselves to be significantly less close than families in the diabetic and nonchronically ill groups do.Moreover, the content of parent-child communications is reported to differ across groups. Parents of the epileptic childrenreport that communications with their children often concern specific issues or potential problems (e.g., their siblings orfriends telling secrets about them), whereas the parents of both the diabetic and nonchronically ill children report that thecontent of their communications with their children usually involves more general topics (e.g., requests for permission to gosomewhere or reports of what they have done during the day).

Ten of the 80 items contained on the Piers-Harris Children's Self-Concept Scale concern issues related to the family.Based on chi-square analyses, five of the ten items showed a significant difference (all ×2(2) ≥ 5.7, p < .05) betweenchildren with seizures and diabetic and healthy children. In each case, the difference corresponded to a diminishedself-concept among the epileptic children relative to their control group peers. These differences are depicted by frequencyof occurrence in Table II.

Table 2Family-Related Items on the Piers-Harris Children's Self-Concept Scale

Groupa

ITEM NO. SENTENCE

E D N

14 I cause trouble to my family 6 0 2

32 I pick on my brothers and 4 0 0

sisters

35 I am obedient at home 6 3 0

38 My parents expect too much 6 2 1

of me

59 My family is disappointed in 5 0 0

me

Note:a Number of children who responses "Yes" in each group. Group size: N = 15. E = epileptic children, D = diabetic children, andN = nonchronically ill youngsters

An examination of the table reveals the consistency with which epileptic children perceive themselves as beingproblematic with regard to their families. These differences in family-related items were further supported by groupdifferences on the overall Piers-Harris scores F (2, 39) = 11.92, p < .0001. Consistent with the item analysis reported inTable II, the mean self-concept score for the epileptic children was significantly lower (x = 53.2) than in both the childrenwith diabetes (x = 60.3) and the healthy children (x = 67.1).

DiscussionThe contribution of the present study lies in its identification of a number of family-related variables that differentiate two

groups of chronically ill children and healthy controls. These findings support the hypothesis that specific psychosocialcomplications of chronic illness may correlate with specific medical conditions. Having focused on the family and the childwith seizures, our results suggest a significant number of areas in which families with an epileptic child are uniquelyaffected. For example, it would appear that families of epileptic children perceive the child as having behavior that isdevelopmentally immature or resistive to parents and whose interpersonal style is relatively unassertive. Moreover, theparents of children with epilepsy perceive their families as being less close than others and as characteristically showingpoor intrafamilial communication. In addition, children with seizures report lower overall self-concept scores as well as

_____________________________________________________________________________________________________________

3

self-concept regarding a host of family-related variables such as the expectations their parents have of them or therelationships they have with their siblings.

These results attest to the fact that the presence of a chronic illness like epilepsy affecting a young family member placesthe family at risk for problems involving family communication, cohesion, and integration. Our hypothesis of a distinctfamilial adjustment pattern in seizure disorders as compared with the chronic illness of diabetes can be clearly supportedfrom the data. Apparently there is a particular set of characteristics associated with epilepsy that distinguishes it from otherchronic illnesses. One of these characteristics is clearly the unpredictability of seizures. In the abstract, it would seem as ifcharacteristics of specific disorders enter into a complex equation in which the affected child brings to his or her family anumber of unique emotional concomitants with which the family must deal, and to which the family may respond in uniqueand sometimes maladaptive ways (such as psychologically distancing each family member from the other or altering thecontent, context, or style of communication). Clearly, however, the consequences of any such equation will ultimatelyderive, at least in part, from specific features of a chronically ill condition, the society's response to it, and the resources afamily has at hand. This reasoning follows from our data as well as that collected by other investigators (7), although theempirical literature as a whole has not as yet reached the level of sophistication necessary to delineate the specificpsychosocial handicaps that may be associated with different disabilities.

The notion of differential effects associated with different chronic illnesses clearly receives support based on ourcomparisons of the two chronically ill groups reported in this study. Moreover, it is of great interest that the mere presenceof a chronic illness in a family member is not predictive of whether any family disturbance will be observed. For example,the presence of a diabetic child in the family did not seem to differentiate the diabetic child's families from the families withno ill member present on our descriptive measures of family function. In addition, many of our analyses were based onthese comparisons of frequencies and means, and therefore the several cases of favorable family adjustment to an epilepticchild should not go unmentioned.

Although the overall contribution that can be made from a single study is inevitably limited, the findings concerning thedifficulties experienced in family communication and closeness and the high degree of passivity and unassertive behavioron the part of the epileptic children can be supported by other work in the literature. For example, Hartlage, Green, andOffutt (9) reported higher dependency scores on the Children's Dependency Scale (8) for the 51 epileptic children in theirstudy than for control groups of children with cystic fibrosis and tonsilectomy. Similarly, Stores and Piran (18), inattempting to investigate dimensions of dependency in epileptic children according to age, school, type of seizure activity,and type of drug treatment, found epileptic boys to be especially dependent compared with both nonepileptic boys and girlswith epilepsy. In addition, male sex and left temporal lobe dysfunction were found to be associated with various behavioralproblems. Further, Ritchie (17) recently showed a greater tendency toward compliance on the part of epileptic childrenrelative to control children in a videotape study of families in a problem-solving situation.

Collectively, these findings suggest the need for more research on the identification of the specific psychosocialhandicaps for families that may accompany various illnesses. It is clear that a great deal of a person's adjustment to theonset, diagnosis, course, and rehabilitation of an illness depends upon how the person and his family have alwaysresponded to stress and how much interference with normal personal and family function is perceived (whether thisestimate is accurate or not). It is less clear how to facilitate more positive adjustments in those persons who initiallyrespond to their illness onset with attitudes of denial or depression. This illustrates the heretofore under-emphasizedimportance of family-based preventive and remedial treatment research, since for the child, so many of his or her successesor failures in situations outside the home intimately depend upon how they deal with their illness inside the family.

Finally, a word of caution. Although most families included in this study were two-parent families in order to eliminateany interactive effects between risk factors such as illness and one-parent homes, the resulting samples across groups maynot be equally representative of the populations from which they were selected. For example, the lower frequencies ofreported family closeness found in the epileptic-member families may be just a small piece of a proverbial iceberg of highmarital discord in families with epileptic children. Thus, our sample of epileptic-member families may be somewhat abovethe mean on dyadic adjustment. Clearly, a large-scale epidemological study on the incidence of marital discord acrossfamilies with a chronically ill member is indicated. In addition, it behooves us as clinicians, researchers, and educators torecognize that while the present study has explored several dimensions of illness influencing the functioning and shape ofthe family, it has not addressed a most important reciprocal influence, namely, how the shape and functioning of the familyin turn influences the shape of the illness. To date, research along these lines has been scarce and difficult to conduct. Suchresearch is necessary, however, and carries with it a great potential for work in family medicine, parent education, andpreventative care.

REFERENCES

1. Berggreen, S. M., " Study of the Mental Health of the Near Relatives of Twenty Multihandicapped Children," Acta

_____________________________________________________________________________________________________________

4

Paediatrica Scandinavica, Supplement, 215, 1-24, 1971. 2. Binger, C. M., Childhood Leukemia: "motional Impact on Siblings," in E. J. Anthony and C. Koupenik (eds.), The

Child in His Family: The Impact of Disease and Death, New York, Wiley, 1973. 3. Breslau, N., Weitzman, M. and Messenger, K., "Psychologic Functioning of Siblings of Disabled Children,"

Pediatrics, 67, 344-353, 1981. 4. CLeveland, D. W. and Miller, N., "Attitudes and Life Commitments of Older Siblings of Mentally Retarded

Adults," Mental Retardation, 15, 38-43, 1977. 5. Connell, J. P., Multidimensional Measure of Children's Perceptions of Control, Denver, University of Denver

Press, 1980. 6. Featherstone, H., A Difference in the Family: Life with a Disabled Child, New York, Basic Books, 1980. 7. Goldberg, R. T., "Adjustment of Children with Invisible and Visible Handicaps: Congenital Heart Disease and

Facial Burns," J. Counsel. Psychol., 21, 428-432, 1974. 8. Golightly, C., Nelson, D. and Johnson, J., "The Children's Dependency Scale," Develop. Psychol., 3, 114-118,

1970. 9. Hartlage, L. C., Green, J. B. and Offutt, L., "Dependency in Epileptic Children," Epilepsia, 13, 27-30, 1972. 10. Lapouse, R. and Monk, M. A., "Fears and Worries in a Representative Sample of Children," Am. J.

Orthopsychiat., 39, 223-248, 1959. 11. Matthews, W. S., Barabas, G. and Ferrari, M., "Perceived Sources of Control in Childhood Epilepsy," in

preparation. 12. McMichael, J., Handicap: A Study of Physically Handicapped Children and Their Families, London, Staples

Press, 1971. 13. Mulder, H. C. and Suurmeijer, T. P., "Families with a Child with Epilepsy: A Sociological Contribution," J.

Biosoc. Sci., 9, 13-24, 1977. 14. Piers, E. V., "Parent Prediction of Children's Self-Concepts," J. Consult. Clin. Psychol., 38, 428-433, 1972. 15. Piers, E. V. and Harris, D. B., The Piers-Harris Children's Self-Concept Scale, Nashville, Tenn., Counselor

Recordings and Tests, 1969. 16. Pless, I. B. and Pinkerton, P., Chronic Childhood DisorderPromoting Patterns of Adjustment, Chicago, Year

Book Medical, 1975. 17. Ritchie, K., "Interaction in the Families of Epileptic Children," J. Child Psychol. Psychiat., 22, 65-71, 1981. 18. Stores, G. and Piran, N., "Dependency of Different Types in School Children with Epilepsy," Psychol. Med., 8,

441-445, 1978. 19. Yule, W., "Epilepsy: Education and Enigma," Special Ed., 62, 205-218, 1973.

_____________________________________________________________________________________________________________

5