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The benevolent overreaction: nursing assessment and intervention in families coping with seizure disorder.

Introduction

Epilepsy is a chronic brain disorder characterized by recurrent seizures. There are approximately 125,000 new cases of epilepsy diagnosed yearly. The majority of these new cases occur in children under the age of two years, or adults older than 65 years.[9] About 1% of the general population will be diagnosed with a seizure disorder by the age of twenty years. To date, there are approximately two million persons with epilepsy in the United States; about 300,000 are school aged children and another 27,000 are preschool children.

This preliminary investigation was an attempt to describe and plan nursing interventions for a phenomenon that, although previously identified, had not been consistently identified on the nursing unit. A number of common patient and family member behaviors were being discussed by the unit nursing staff. The staff identified the parents' overprotective, indulgent and permissive behaviors and the children's dependent behaviors, as problematic.

The Benevolent Overreaction

A review of the literature produced a description of the phenomenon termed as "the benevolent overreaction" (BOR). The BOR was defined as the "cluster of parental actions which includes overprotection, overindulgence, and permissiveness, commonly referred to as `spoiling' by the layman" (p.268).[5] They go on to state that the term "spoiling" gives the "connotation of harmlessness" to a phenomenon that is both prevalent and emotionally debilitating. The initial phase of the BOR is seen when the child's significant caregivers take action in response to their identification of the child's handicap. The BOR refers only to those protective and loving behaviors that, while self-serving, are generally not seen by the caregiver as detrimental to the child's emotional welfare. Unfortunately, the effect is detrimental, and the emotional damage to the child is often manifested as low self-esteem, lack of initiative and decreased self-control. In addition, the deprivation of experiences inherent to this phenomenon can result in emotional, social and intellectual handicaps more deleterious than the original chronic disorder. An example seen on the inpatient Diagnostic and Treatment Unit (DTU) was reported as a 19 year-old woman who was verbally abusive to her mother.

Questions or comments about this article may be directed to: James A Murray RN, MSN 749-A Mountainwood Road, Charlottesville, Virginia 22903. He is a Clinician III at the University of Virginia Health Science Center, Comprehensive Epilepsy Unit in Charlottesville, Virginia.

Mallie P. Haynes RN, is the utilization management coordinator for neurology at the University of Virginia Health Science Center in Charlottesville, Virginia. The mother was seldom away from the young woman who was described by the hospital staff as intelligent but immature. The mother accepted the abuse without protest. After assessment of both women it was determined that the daughter had few responsibilities at home, was not employed and could not identify any independence-related goals for her future.

It is possible that up to 15% of children below the age of 18 years have some chronic illness or conclusion.[14] Their psychosocial adjustment has be-en defined in various ways. Adjustment has been viewed as fewer behavioral problems, personality functioning or social competence, or as positive self-esteem.[14] It was also found that the incidence of social competence difficulties in chronically ill children is twice that of healthy children.[7] Successful peer relationships, control of aggression and role-taking, independence, school achievement and participation in normalization activities are seen as indicators of positive coping with chronic illness in school-aged children.[18] Other researchers found that children with neurological disorders like epilepsy, or any chronic disorder where exacerbations and remissions lack predictability are at increased risk for adjustment problems.[2,14] Several studies found that children with epilepsy have an increased incidence of emotional problems.[3,4] In another study it was found that 28.6% of children with epilepsy show some psychiatric problems.[17] This was compared with 11.6% incidence in children with other chronic illnesses, and 6.6% in the general population. However, with the diagnosis of the chronic illness or condition, it is important to realize that the child is not alone; that the entire family is affected. Negative impact on the family is often seen on the inpatient DTU. In many cases depression is identified in family members In one such case a mother discussed her suicidal ideations candidly with the nursing staff. Along with intractable seizures, her daughter had numerous cognitive and physical handicaps Many times parents express feelings of entrapment, despair, frustration and anger They often identify a lack of available support services for their children, and are overwhelmed by the task of locating services within the complexities of the health care system.

Adaptation to chronic illness is seen as a major problem in children with epilepsy In a study of children aged 8 through 12 years with either epilepsy or asthma, poor adaptation was seen in 28% of the children with epilepsy as opposed to 11% of children with asthma.[1] Similar findings with adequate coping were seen in only 48% of children with epilepsy versus 56% of children with asthma. One model of family adaptation to chronic illness differentiates two major processes as response to life stress and change: adjustment and adaptation.[11] The adjustment phase is the natural and persistent reaction by the family system to life's current and prior stressors, beliefs about the seriousness of the stressors and the existing resources available to cope with these stressors. Hardships and change are viewed as natural parts of life. Families develop strategies in response to these life events that promote growth and protect the family from crisis. Protective strengths that encourage family adjustment are the positive result of current and prior stressors.[12] A state of crisis is reached when the family is no longer able to adjust due to the accumulation of stressors, their perceived seriousness, and the lack of adequate support systems.

At this time of crisis, the family changes from adjustment to adaptation as it attempts to achieve balance and control in the family system. Families achieve this balance in several major ways to increase family stability and to aid the child's development.[1] One adaptive strategy is the elimination of excessive stressors and demands on the family's resources. Another is to effect a change in the way they perceive the stressors. A third adaptive strategy is to focus on bolstering, or at the least maintaining, the existing resources. Interventions may include fostering effective communications, utilizing community resources, involving extended family members, using specialty organizations, and incorporating many other forms of social support. Good family adaptation is seen as increased strength and better ability to adjust to future crisis. In contrast, poor adaptation perpetuates the crisis and exhausts the family's resources. It has been pointed out that after the diagnosis of a child with chronic illness, the family progresses through a fairly predictable sequence of stages, regardless of the actual nature of the condition.[20] The first of the stages is characterized by intense emotion, shock, disbelief and denial. Typical parental behaviors during this phase may include seeking numerous medical opinions, refusing to believe medical tests, delaying agreement to treatments, not talking about the condition, not asking questions about the diagnosis, treatments, or prognosis and other forms of partial and complete denial. After the initial shock and denial, which may last months, comes feelings of guilt, anxiety, depression and anger in response to the growing understanding that their child has a chronic illness. A third stage represents the first positive steps to actively seek information about the illness. Finally, admission that the condition exists and the beginning of practical problem solving occurs.[1] It is with the end of disbelief, and the beginning of the feeling stage that the potential for the BOR is most readily seen. The cycle of the BOR is driven by alternating sets of feelings in the parents and in the ill child.

A proposed model of parental adaptation to chronic illness building upon Olshansky's chronic sorrow model closely resembles the BOR cycle.[8,13] This model integrates both the time-bound model of stages of adjustment with the cyclical framework of chronic sorrow (Fig 1).

This cycling of intense high and low emotions takes the family through the stages of impact, denial and grief. The acknowledgment and beginning acceptance of the child's handicap and its future consequences start the process of outward focusing and the move towards closure. It is the cycling of the emotions and the revisiting of grief and denial issues that draws a parallel between chronic sorrow and the BOR.

The BOR incorporates the normal grief, guilt and anger felt by many parents with chronically ill children. It is the inability of the family to break the cyclic response pattern and move towards acceptance and closure that evidences a problem with family adaptation. In the BOR, the child's insecurity and focus on the handicap elicts in the parents an increased feeling of guilt, fear, shame, sorrow and low self-esteem. These feelings, among others, drive the parental behaviors of overprotection, overindulgence and permissiveness. As a result of these behaviors, the child is deprived of new learning experiences, discipline. structure and the frustration necessary to promote independence, self-control and initiative. The child remains dependent on the parents. demanding of their attentions and developmentally immature. The parents may well react to this set of behaviors with frustration, resentment, ambivalence, anger and possibly hostility. These emotions are generally expressed covertly. Passive-aggression and self-sacrifice are common in expressing these veiled feelings, but overt aggression may also be seen. Caught in the self-perpetuating cycle of the BOR, these feelings are transmitted to the child who reacts with renewed insecurity and focus on the illness (Fig 2).

Two maladaptive coping styles have been described that are seen in the phenomenon of the BOR. The first, termed "Feels Different and Withdraws" reflects the BOR stage where the child feels negatively about self, restricts his or her activities, focuses on what they cannot do, and are preoccupied with their health condition.[4] Self-consciousness, social isolation, withdrawal, increased stress, anxiety and vulnerability are the characteristics linked with this coping style. The second coping style, termed "Is Irritable, Moody, and Acts Out" describes children who act out their negative feelings and are unable to manage their emotions. These children are characterized as generally unhappy, "resistive to following the usual rules, going to school, and following activity restrictions imposed by the chronic health condition" (p.168).[4] It was also found that children using this coping strategy had "poorer self concepts, more negative attitudes about the illness and more behavior problems at home and school."[4]

"Overprotection is so common a parental reaction that it behooves the nurse to assess for its presence and to begin counseling as soon as possible."[20] Table 1 lists common characteristics of parental overprotection. Although overprotection is a natural consequence of the fears and misbeliefs surrounding epilepsy, it can become a greater handicap than the seizure disorder.[19]

[TABULAR DATA 1 OMITTED]

Counseling is one of the first interventions in the management of seizure disorders. It is emphasized that the parents must allow their children to experience the risks inherent in everyday life. Experiencing the normal daily activities of childhood allows the child to develop normally and avoid the effect of isolation and overprotection on development.[19] At the diagnosis of a seizure disorder, a nursing diagnosis of altered family process can be initiated. This alteration due to situational crisis may have goals which may include assisting family adjustment, promoting understanding of seizure disorders, promoting child care abilities, providing support, promoting positive adaptation to the child and reducing the family's fears and anxiety. In the case of BOR, a nursing diagnosis of altered growth and development related to chronic illness and parental over-benevolence is made. The outcome goal for this diagnosis is to promote achievement of physical, psychosocial and cognitive developmental milestones appropriate to the child's age and abilities.

Interventions appropriate to BOR are based on the concept of normalization. Research suggests that normalization is a process by which the family is able to change their perspective on their life from one of deviance and difficulty to a more normal life story.[16] This change is accomplished through reframing. By maximizing the normal aspects of their life, they can acknowledge the abnormal aspects and relegate them to a subordinate position. In this manner, the life events particular to a child with a seizure disorder would be acted upon as necessary (seizures, medication, side effects, etc), but are not given the primary focus of the family's life. By assisting the reframing process, nurses can help families to develop relatively unencumbered by the chronic illness.

Some of the principles of normalization are preparing the child for the changes that will occur from the illness, allowing the child to participate in the decisions regarding his care, sharing the responsibilities of care in the family, allowing the child to have appropriate control of his care and setting appropriate behavior expectations for the child in accordance with the normal family rules.[6,10] Intervention to break the cycle of the BOR should consider the developmental level of the child and set appropriate expected outcomes. For example, in the case of the toddler, the developmental goal is to promote a sense of autonomy. Assisting the parents to allow the child opportunities for choice, promoting independent functioning [ie, feeding, toileting, dressing), and using appropriate disciplinary strategies are important interventions. Interventions at the preschool level are geared to the development of initiative, purpose and socialization skills. It is important to assess the level of functioning and initiate interventions to promote advancement. For the child with a seizure disorder, interventions include age-appropriate and ability-appropriate epilepsy education. The importance of informing children about their medical condition cannot be over stressed. It has been found that children often have secret fears and feelings of guilt surrounding their chronic illness.[1] Teaching about seizures, first-aid, safety and medications give both parents and children a more realistic view of the illness. Giving the child age appropriate responsibilities, stressing the importance of not varying the family routines any more than necessary, and giving the child control to reduce his insecurity and dependency are important interventions. Applying the same rules to the child as his siblings and peers in regard to discipline, household chores and activities and attending school, are also necessary in promoting normalization.

Methodology

In an attempt to better identify the instances of BOR on the DTU, a chart review and staff interviews were performed. The charts were reviewed for all children from 0 - 18 years of age for the prior year who had been admitted to the inpatient epilepsy DTU at a tertiary care medical center. The children were admitted from a variety of locations, both metropolitan and rural. The dates were inclusive from May 1, 1992 through April 30, 1993. A total of 32 charts were reviewed for documentation of the themes of parental overprotection, including behavior problems, alterations in family process, alteration in growth and development, overindulgence and permissiveness.

Of the 32 charts reviewed, the mean age of the children was 9.16 years of age (SD= 5.01); 17 subjects were male, 15 were female. Of these subjects, 8 (25%) were identified with documentation containing themes of the benevolent overreaction. Four of these were identified as nursing documentation and four were by child and family psychiatric services (CFPS). All four cases of the nursing documentation were in response to some behavior crisis attributed to either the child or the child's family. In only one case did nursing document a care plan to address these behaviors. In the cases where CFPS identified themes of the BOR, parental overprotection was diagnosed in all four cases. Oppositional defiant disorder was diagnosed in one of the cases. Followup counseling was recommended in all four of the CFPS cases, however, no follow up counseling was recommended in those cases with nursing documentation alone.

In the second phase of this survey, nurses on the DTU were interviewed and asked to recall any instances where they had personally observed the phenomenon of the BOR. The nursing staff identified themes of the BOR in large numbers of patients seen on the DTU, and some remarked that they felt that the findings of the chart review were low. They identified ages ranging from toddlers to young adults in their late twenties. Common themes running through the case studies were parental denial of problems, little to no disciplinary action, discipline applied inconsistently, poor follow through with limit setting and many of the characteristics of overprotection listed in Table 1. In several of the case studies, the children were of school age in "home-bound" school, and reported that they had few or no friends. In all cases it was reported that the parents or primary caregiver would perform activities for the child of which he was capable. These included speaking for or answering for the child, assisting with dressing or toileting and assisting with feeding. In many of the cases the nursing staff reported that the children seemed immature for their age. In some cases it was reported that the parent or caregiver was unable to allow the child out of their sight, or in other cases "out of their reach." In the older children and young adults, the assessments indicated that there were very few demands put on the patients by their families. In many cases, incidences of antisocial or hostile behaviors were routinely overlooked by the parents. These included cursing, slapping, hitting and spitting. Poor communication skills between child and family members was also noted in some cases. In some cases it was noted that parent would sleep in the bed with the child, regardless of the child's age. The oldest incidence of this behavior involved a mother and her 19 year old son.

In the case reports showing themes of the BOR it was stated by the nursing staff that active intervention helped to alleviate the problems. In some cases parents were encouraged to leave the unit and participate in activities for themselves. Some parents who did this reported that this was the first time in several years that they had been separated from their child. Most reported this as a scary but positive experience. Nurses reported several reasons for the lack of documentation and their reluctance to intervene. Some stated that they were uncomfortable with challenging the parents regarding parenting skills. Others felt that they were lacking in the intervention skills necessary to confront ineffective coping and adaptation skills. Some felt that inpatient visits were too brief to initiate an effective behavior and coping skills teaching program. All generally agreed that parental overprotection was a problem and that the incidence was high in the families seen on the inpatient unit. Again, some nurses felt that the incidence was actually higher than documented. It is problematic that the incidence of parental overprotection identified by nurses received no documented follow up. It is unknown if this is due to nurses not actively reporting these problems to medicine and psychiatry for follow up, or failure by other team members to follow up nursing observations and concerns.

It is impossible to make generalizations from the small sample of data, the restricted population from which it was drawn and the retrospective interviews with nursing staff. More study is needed into the incidence of the BOR in families of children with intractable epilepsy. Additional study of the themes of the BOR are needed to correlate these maladaptive family-coping strategies with patient outcomes and effective nursing interventions. More can be learned from prospective study into the precursors of the BOR and into the effectiveness of nursing intervention in patients experiencing this phenomenon. This patient survey does seem to support other studies that suggest a great need for ongoing psychosocial intervention in families with chronically ill children. This is especially so in children with chronic neurologic disorders. It also illustrates that there is great potential for nurses to assess, plan and intervene in situations where the child and family development has been arrested by ineffective coping processes. Nursing's focus on preventive health care, health education and other mechanisms for increasing the patient's support network within the family and community, reflect a holistic approach to health care. Promoting adaptive strategies in family and individual development have long been issues important to nursing and have been the subject of much nursing research. With the sweeping changes in health care, and as health care shifts from inpatient/disease-based to outpatient/health-based care, nurses will be a natural choice for community-based family psychosocial treatment.

Discussion

The BOR is a cyclic phenomenon seen in families of children with chronic illness. The incidence of this phenomenon is especially frequent in children with intractable epilepsy. This may be a result of the unpredictability of the seizure episodes.

The BOR begins when parents feelings of guilt and fear leave them unable to look through the illness and see their child's potential for independence. Instead they become trapped in a cycle of indulgence and overprotection, both in times of frequent seizures and in times of being relatively seizure-free. The focus of the family's energies is on the illness, fostering an ever increasing dependence in the child. The psychosocial developmental milestones are left unmet. It is not uncommon to see teenagers and adults experiencing the separation anxiety associated with very young children and their mothers, an inability to conceptualize a life independent of their parents, or the ability to plan realistic goals for their future.

From time to time, parents take glimpses through the illness curtain and are confronted with their feelings of anger, despair, frustration and exhaustion from the role of eternal caregiver. It is during these times when nursing intervention is at its most helpful and parents most receptive to help from others. In many cases they only need a suggestion from a caring professional to allow their child to begin the process of achieving independence. Reassurance that they are doing the right thing and suggestions for coping with the child's increasing demands is a strong starting point.

On the DTU, nursing staff are able to demonstrate to the parents how to begin the shift of responsibility from the caregiver to the child. An example of this is demonstrating how to be consistent in the treatment of the patient and how this consistency conveys to the child your expectations of his or her behavior. In teens and adults, frank discussion about their feelings of helplessness and powerlessness and suggestions of things they can do independently is often a breakthrough point. Referrals to professional counselors, career counselors, and social services agencies are also indicated for teens and adults.

Summary

Education is the key to preventing and breaking the cycle of the BOR. In these days of increasing health care cutbacks, decreasing patient days and greater patient to staff ratios, it is important for nurses as the primary patient educator to find new and innovative ways to convey information to their patients and families. This is especially important where information and counseling are their best hope for greater independence and quality of life.

[Figures 1 to 2 ILLUSTRATIONS OMITTED]

References

[1.] Austin JK: Assessment of coping mechanisms used by parents and children with chronic illness. Matern Child Nurs 1990; 15:98-102. [2.] Austin JK: Family adaptation to a child's chronic illness. Ann Rev Nurs Res 1991; 9:103-120. [3.] Austin JK, McDermott N: Parental attitude and coping behaviors in families of children with epilepsy. J Neurosci Nurs 1988; 20(3):174-179. [4.] Austin JK, Patterson JM, Huberty TJ: Development of the coping health inventory for children. J Pediatr Nurs 1991; 6(3): 166-174. [5.] Boone DR, Hartman BH: The benevolent Overreaction: A well intentioned but malignant influence on the handicapped child. Clin Pediatr 1972, 11(5):268-271. [6.] Bossert E, Holaday B, Harkins A, Turner-Henson A: Strategies of normalization used by parents of chronically ill school age children. Child Adolescent Psychiatr Mental Health Nurs 1990; 3(2):57-61. [7.] Breitmayer BJ, Gallo AM, Knafl KA, Zoeller LH: Social competence of school-aged children with chronic illnesses. J Pediatr Nurs 1992; 7(3):181-188. [8.] Copley MF, Bodensteiner JB: Chronic sorrow in families of disabled children. J Child Neurol 1987; 2:67-70. [9.] Hauser WA, Hesdorffer DC: Epilepsy Frequency Causes, and Consequences Demos, 1990. [10.] Krulik T: Successful "normalizing" tactics of parents of chronically ill children. J Adv Nurs 1980; 5(6):573-578. [11.] McCubbin HI, Patterson JM: Family transitions: Adaptation to stress. Pages 5-25 in: McCubbin HI, Figley CR (editors): Stress and the Family: Coping with Normative Transitions. Vol 1. Brunner/Mazel, 1983. [12.] McCubbin MA, McCubbin HI: Family stress theory and assessment. Pages 2-25 in: McCubbin HI, Thompson Al (editors): Family Assessment Inventories for Research and Practice. University of Wisconsin, Madison, 1987. [13.] Olshansky S: Chronic sorrow: A response to having a mentally defective child. Social Casework 1962; 43:190193. [14.] Perrin EC, Ayoub CC, Willett JB: In the eyes of the beholder: Family and maternal influences on perceptions of adjustment of children with a chronic illness. Devel Behav Pediatr 1993; 14(2):94-105. [15.] Perrin JM: Introduction. Pages 1-10 in: Is-sues in the Case of Children With Chronic Disease, Hobbs N, JM Perrin (editors)Jossey-Bass. 1985. [16.] Robinson CA: Managing life with a chronic condition: The story of normalization. Qual Health Res 1993. 3(1): 6-28. [17.] Rutter M, Graham P, Yule W: A neuropsychiatric study in childhood. Clin Devel Med 1970; 35-36. [18.] Shapiro J: Family reactions and coping strategies in response to the physically ill or handicapped child: A review. Soc Sci Med 1983; 17: 913-931. [19.] Vining EP, Freeman JP: Epilepsy in children. Pages 34-42 in: Hauser, WA (editor), Current Trends in Epilepsy A Self-study Course for Physicians, Vol 3. Epilepsy Foundation of America, 1990. [20.] Whaley LF, Wong DL: Page 927 in: Nursing Care of Infants and Children, 4th ed. CV Mosby Company, 1990.
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Author:Murray, James A.; Haynes, Mallie P.
Publication:Journal of Neuroscience Nursing
Date:Aug 1, 1996
Words:4314
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