Stressors of parents of children with epilepsy and intellectual disability.
Abstract: Past research suggested that parents of children who have both epilepsy epilepsy, a chronic disorder of cerebral function characterized by periodic convulsive seizures. There are many conditions that have epileptic seizures. Sudden discharge of excess electrical activity, which can be either generalized (involving many areas of cells in and intellectual disability are at risk for increased stress, but the specific causes of stress have not been studied. Descriptions of the specific stressors are needed before effective interventions can be designed. The purpose of this study was to identify and explore these sources of stress. We invited parents of children with a diagnosis of both epilepsy and mild intellectual disability (i.e., estimated IQ of 55-75) to participate in one open-ended interview that was tape recorded and transcribed verbatim ver·ba·tim
Using exactly the same words; corresponding word for word: a verbatim report of the conversation.
adv. . Data analyses revealed five categories of sources of stress: concern about the child, communication with healthcare providers, changes in family relationships, interactions with the school, and support within the community. This study is a first step in developing a more thorough understanding of sources of stress for parents of children with epilepsy and intellectual disability. The identification of stressors provided a foundation for an assessment checklist and suggested avenues for future intervention.
Parents of children with epilepsy are known to experience stress related to their child's condition, which is compounded when the child also has mild intellectual disability (Hoare & Kerley, 1991). Our recent research shows that children with both epilepsy and intellectual disability have a poorer quality of life and more mental health problems than children with epilepsy alone (Buelow et al., 2003). However, little is known about the particular sources of stress that might be experienced by parents of these children, including their unmet psychosocial psychosocial /psy·cho·so·cial/ (si?ko-so´shul) pertaining to or involving both psychic and social aspects.
Involving aspects of both social and psychological behavior. care needs (i.e., need for information or support).
In the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area. , epilepsy affects approximately 326,000 school-aged children; 45,000 new cases are diagnosed every year. Of these children 10%-20% may also have a diagnosis of intellectual disability or mental retardation mental retardation, below average level of intellectual functioning, usually defined by an IQ of below 70 to 75, combined with limitations in the skills necessary for daily living. (Epilepsy Foundation, 2003; Forsgren, Edvinsson, Blomquist, Heijbel, & Sidenvall, 1990; Sillanpaa, 1992). These numbers are even higher when children with serious learning problems but without a diagnosis of intellectual disability are included (Dodson, 2001). Family problems such as parental stress remain understudied despite the large number of children affected by both disorders. Most past research has focused on parents of children with either intellectual disability or epilepsy and normal IQ but not on parents of children with both conditions. The purpose of this study was to identify sources of stress for parents of children with both epilepsy and serious learning problems.
Review of Relevant Literature
Multiple studies have shown that families of children with chronic conditions (including intellectual disability) experience more stress than families of children without chronic conditions (Abbeduto et al., 2004; Dyson, 1991, 1996; Saloviita, Italinna, & Leinonen, 2003; Wallander & Varni, 1989; Weiss, 1991). Moreover, increased family stress is associated with child behavioral problems, less parental confidence in parents' ability to manage their child's behavior, and problematic mother-child interactions (Emerson, 2003; Feldman, Hancock, Reilly, Minnes, & Cairns Cairns, city (1991 pop. 64,463), Queensland, NE Australia, on Trinity Bay. It is a principal sugar port of Australia; lumber and other agricultural products are also exported. The city's proximity to the Great Barrier Reef has made it a tourist center. , 2000; Hauser-Cram et al., 2001; McIntyre, Blacher, & Baker, 2002; Raina et al., 2004; Shore, Austin, Huster, & Dunn, 2002; Snowdon, Cameron, & Dunham, 1994; Weiss, 1991). There are similar findings for children with epilepsy, increased family stress, lower socioeconomic status, and fewer family adaptive resources (e.g., extended family support, family mastery) have been associated with a higher incidence of behavioral problems in children with epilepsy (Austin, Dunn, Johnson, & Perkins, 2004; Carlton-Ford, Miller, Nealeigh, & Sanchez, 1997).
Ineffective parental responses or negative parental attitudes toward the child's condition can increase family stress, in a longitudinal study longitudinal study
a chronological study in epidemiology which attempts to establish a relationship between an antecedent cause and a subsequent effect. See also cohort study. of 224 children with new-onset epilepsy (Austin et al., 2004), low family mastery (i.e., sense of control, family organization, level of cooperation, family emotion) and low parental confidence in the ability to manage the child's behaviors were associated with increased child behavioral problems. in another study, parents of children with severe epilepsy reported more stigma stigma: see pistil.
mark of Cain
God’s mark on Cain, a sign of his shame for fratricide. [O. T.: Genesis 4:15]
scarlet letter and more negative attitudes toward their child's epilepsy than did parents of children with less severe seizure conditions, in the latter study, negative perceptions were associated with more behavioral problems (Carlton-Ford et al., 1997).
As the number of stressors increases, family functioning (e.g., family organization, communication) worsens (Dyson, 1991; Failla & Jones, 1991; Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001; Trute & Hiebert-Murphy, 2002; Wallander & Varni, 1989). Families of children with both epilepsy and intellectual disability probably experience more stressors than families of children who have only one of these conditions. Understanding how the family environment is associated with the child's behavior is important, because the family environment may be amenable AMENABLE. Responsible; subject to answer in a court of justice liable to punishment. to nursing interventions.
In summary, both parents of children with epilepsy and parents of children with intellectual disability experience stress, and parental stress is associated with negative child outcomes. Some parental stressors (e.g., behavioral disruptions) are associated with all chronic childhood conditions (Dyson, 1993; Feldman et al., 2000; Hauser-Cram et al., 2001; Hoare & Kerley, 1991; Weiss, 1991), but behavioral problems occur more frequently among children with neurological conditions Neurological conditions
A condition that has its origin in some part of the patient's nervous system.
Mentioned in: Pervasive Developmental Disorders than among children with other types of disorders (Howe, Feinstein, Reiss, Molock, & Berger, 1993). Furthermore, parents of children with epilepsy might experience additional sources of stress because of the episodic episodic
sporadic; occurring in episodes. e. falling a paroxymal disorder described in Cavalier King Charles spaniels in which affected dogs, starting at an early age, experience episodes of extensor rigidity, possibly brought on by stress. e. nature of epilepsy and the stigma associated with it (Carlton-Ford et al., 1997; Hoare & Kerley). Prior research has focused mainly on children with epilepsy and normal IQ or on children with chronic conditions, including intellectual disability. Families of children with both epilepsy and serious learning problems, including those with intellectual disability, are understudied. Examining this unique population Ls important in order to provide direction for the development of family interventions.
We used semistructured interviews with open-ended questions to identify and explore the sources of stress and psychosocial care needs of parents of children with both epilepsy and intellectual disability. This study was part of a larger study to identify mental health and quality-of-life problems in children with both epilepsy and serious learning problems or mild intellectual disability as well as to determine the effect of these conditions on their parents.
Primary caregivers of children with epilepsy and intellectual disability were recruited from outpatient pediatric pediatric /pe·di·at·ric/ (pe?de-at´rik) pertaining to the health of children.
Of or relating to pediatrics. neurology neurology (nrŏl`əjē, ny–), study of the morphology, physiology, and pathology of the human nervous system. and epilepsy clinics, a pediatric neurologist Neurologist
A doctor who specializes in disorders of the brain and central nervous system.
Mentioned in: Cervical Disk Disease
a specialist in neurology. in private practice, and school nurses. Twenty parents including 18 mothers, one father, and one mother-stepfather dyad dyad /dy·ad/ (di´ad) a double chromosome resulting from the halving of a tetrad.
1. Two individuals or units regarded as a pair, such as a mother and a daughter.
2. , were studied. Their children ranged in age from 9 years to 16 years, with a mean age of 12.2 years (SD = 2.5 years). Seven children were male, and 13 were female. All children were at least one grade level behind their peers at school, and all parents reported that their children had significant learning problems and had been diagnosed as being mildly mentally handicapped. Eighteen children were in classrooms for students with special needs. Two were in regular classes but received additional classroom assistance.
All had a definite diagnosis of epilepsy and had been treated with medication. Two children had been diagnosed with epilepsy at birth due to birth trauma and subsequent seizures. Two children had been diagnosed with epilepsy at older ages (8 and 14 years). The remaining 16 children had been diagnosed with epilepsy in early childhood (i.e., ages 2-6 years). Learning problems had been diagnosed before seizures occurred in only two children.
Three parents were divorced, one mother was separated from the father, and one mother had never been married. In three other families, the biological parents were divorced and the mother had remarried. Family income ranged from less than $10,000 per year to more than $80,000 per year. Six families reported incomes of less than $20,000 per year. Sixteen families had children in addition to the affected child.
The study was approved by the university institutional review board. After obtaining informed consent, the first author interviewed participating parents using an open-ended interview guide. Face-to-face interviews, lasting approximately 1 hr, were tape recorded. A review of the literature, along with the clinical experience of the first author, provided a foundation for the development of the starter questions. Parents were asked to talk about their problems and concerns regarding the child's classroom behavior, other school behavior, and interactions with teachers. The interview guide included questions about the family's leisure activities and the support parents would like to have from friends, extended family, and the healthcare system. As new topics emerged, they were explored in depth. The questions asked were not limited to those in the interview guide.
Each interview was transcribed verbatim. The first author and a coauthor analyzed the transcriptions based on a list of a priori a priori
In epistemology, knowledge that is independent of all particular experiences, as opposed to a posteriori (or empirical) knowledge, which derives from experience. codes (i.e., school, community, home, medical care) corresponding to the interview questions (Miles & Huberman, 1994). Descriptive codes were then grouped into broader conceptual categories and subcategories. To ensure auditability, the first author kept a decision trail of notes regarding coding and identification of categories and subcategories. The investigators independently placed data into the categories. They then met to compare findings and to identify new categories and subcategories. This process continued until total agreement between researchers was reached. A summary grid for each category and subject was prepared to assist in the identification of patterns and themes (Knafl & Howard, 1984).
Five categories of sources of stress were identified: concern about the child, communication with healthcare providers, changes in family relationships, interactions with the school, and support within the community (Table 1). Each category is described in detail below. Unmet psychosocial care needs are integrated into these categories because conceptually they can be viewed as sources of stress.
Concern About the Child
The concerns fell into three specific areas: the child's future and transition issues, behavioral problems, and consequences of seizures (e.g., injury, death, decreased cognitive status).
Child's future and transition issues. All of the parents interviewed were concerned about what would happen to their child in the future. Parents were afraid that the child would always have to live with them because the child would not have the skills to live independently. They worried that the child's quality of life would suffer because of the disorders. One mother said, "I tell him he can do whatever he wants to do in life. I just support him." But when asked how she would help with that, she said, "I don't see him going to college. I'm having a hard time just getting him through grade school."
Despite these pressing worries, only three parents talked about actual plans to help their child make the transition to adulthood. One stated, "I would love to have her live with me forever, but that wouldn't be fair to her. I want her prepared. We really see her being able to live on her own, ideally with a roommate. We felt that we had to make sure her bases were covered." Throughout the interview, this mother described a process of goal setting and intervening to meet the goals.
Behavioral problems. Nineteen of the twenty parents discussed their child's behavior and their own difficulties in managing problem behaviors, which ranged from inattention in·at·ten·tion
Lack of attention, notice, or regard.
Noun 1. inattention - lack of attention
basic cognitive process - cognitive processes involved in obtaining and storing knowledge to combativeness com·bat·ive
Eager or disposed to fight; belligerent. See Synonyms at argumentative.
com·bative·ly adv. . Four parents described aggressive physical behavior that interfered with all activities outside the home. One child had been removed from school for assaulting a teacher. Other parents described behaviors that were socially problematic (e.g., inappropriate vocalizations or conversations) and made the child stand out. One mother said, "Everybody knows when he comes into a room."
Parents were concerned about their children's poor self-esteem and frustration. One mother said, "She is very quiet and compliant because her self-esteem is so low. She wants to please others but then has rages." Another believed that her son's anger stemmed from frustration but said, "I think it's wrong of him to sit there and get so darned darned
Adj. 1. darned - expletives used informally as intensifiers; "he's a blasted idiot"; "it's a blamed shame"; "a blame cold winter"; "not a blessed dime"; "I'll be damned (or blessed or darned or frustrated frus·trate
tr.v. frus·trat·ed, frus·trat·ing, frus·trates
a. To prevent from accomplishing a purpose or fulfilling a desire; thwart: , because I feel like he is making choices and I can't understand why he keeps making those choices."
Although most parents discussed issues related to their child's behavior, few directly expressed a need for help with behavior management behavior management Psychology Any nonpharmacologic maneuver–eg contingency reinforcement–that is intended to correct behavioral problems in a child with a mental disorder–eg, ADHD. See Attention-deficit-hyperactivity syndrome. . One mother did complain that when she discussed behavior with her physician, he did not want to deal with the issue. Only one mother discussed a behavior-management plan that involved working with the school.
Consequences of seizures. Eight parents discussed the potential consequences of seizures, including injury, death, and cognitive decline. One mother said, "I am constantly afraid that she will be injured in·jure
tr.v. in·jured, in·jur·ing, in·jures
1. To cause physical harm to; hurt.
2. To cause damage to; impair.
3. when I am not there." Another mother was afraid that her child would die during a seizure. Many parents expressed a fear that their child would continue to experience cognitive decline related to ongoing seizures. One mother said, "I would like to be able to differentiate behavior from seizures, and I want to know what it will do to her brain. Is there deterioration?" The fear of seizures affected parents continually. As one mother put it, "I've never not been on high alert since she started having seizures."
Communication with Healthcare Providers
This category encompassed all matters concerning health care and healthcare providers. Although most of the parents seemed fairly happy with their children's healthcare providers, they did discuss concerns about medications and a lack of information regarding their child's illness. Several parents told stories about the problems they had experienced in obtaining a diagnosis.
Medication problems. The most commonly mentioned problem related to medication for seizures. Parents generally thought that the doctor's primary concern was medication management and that doctors often ignored what parents believed were significant side effects Side effects
Effects of a proposed project on other parts of the firm. of medication. One mother stated, "When I call and tell them my son had another seizure, all they ever want to do is increase medications. They don't try to get to the bottom of the problem." Although they complained about medications and side effects, parents did not have suggestions as to actions their healthcare provider might be able to take regarding seizure treatment. When asked what she would like to see her healthcare provider do for her and her daughter, one mother stated, "Find a cure."
Need for information. Parents commonly expressed the need for more information about their child's condition, including its future course and situations about which they should be concerned. Some parents commented that seizure count was the only important fact for their physician. They wanted help with some of the issues related to their child's condition, such as school problems and troublesome behavior. They also expressed a need for information related to medications, particularly side effects.
Time to diagnosis. Nine parents complained about the length of time it had taken for the epilepsy to be diagnosed. The children who were diagnosed early had experienced a major event such as birth trauma or meningitis meningitis (mĕnĭnjī`tĭs) or cerebrospinal meningitis (sĕr'əbrōspī`nəl), acute inflammation of the meninges, the membranes that cover and protect the brain and spinal cord. or they had had a generalized tonic-clonic seizure generalized tonic-clonic seizure
See grand mal seizure.
generalized tonic-clonic seizure Generalized seizure, grand mal seizure, tonic-clonic seizure Neurology A seizure of the entire body, characterized by muscle . More subtle seizures often had gone unrecognized for years. One mother explained, "I would talk to her, and she couldn't respond ... and she was gone again. I didn't say anything to [the doctor] at that point, you know, because I'll just be a hysterical hysterical Pop psychology adjective Referring to a state of extreme agitation Vox populi Laugh, laugh, much, much; hilarious; jocular mother or it's just a behavior problem. Everything was a behavior problem. I got so sick and tired of it." In this particular situation, a teacher noted that the child was having staring spells; only then was a diagnosis finally made. Another mother said, "He just shakes. My sister even asked me why he did that, but I talked to the doctors and they never even suspected."
Changes in Family Relationships
Most parents discussed concerns related to relationships among family members (e.g., between father and mother, parent and child, child and siblings) and the overall effect of the child's problems on the family.
Marital relationship Noun 1. marital relationship - the relationship between wife and husband
family relationship, kinship, relationship - (anthropology) relatedness or connection by blood or marriage or adoption . In some families, the marital relationship served as a source of support in managing the child. Other families reported that communication within the family was poor because all of their energy was directed toward managing the child. For example, one mother stated that, although they remained married, she and her husband rarely communicated. She attributed the poor marital situation to their child's continuing problems.
Only one of the divorced parents believed that the divorce had been directly related to the child's problems. In most of the divorced families, communication was not good. In the three families in which the mother had remarried, the stepfather had an active role in raising the child. One stepfather did not work outside the home so that he could stay home to care for his stepson step·son
A spouse's son by a previous union.
a son of one's husband or wife by an earlier relationship
Noun 1. and to be available if the child was sent home from school.
Sibling sibling /sib·ling/ (sib´ling) any of two or more offspring of the same parents; a brother or sister.
n. relationships. Of the 16 families with multiple children, six parents reported that, because of their child's condition, the affected child and the siblings did not get along, one mother stated that because her son had been ill for so long, her other children lived with their grandparents and had not bonded with their ill sibling. Other mothers complained that they were unable to give equal time to all siblings, one mother reported that her older daughter had said, "I don't want her down here with us--keep her away," when she had friends over.
In families in which the siblings did get along, one of the siblings often took on a mothering role. Eight parents reported that a sibling often took on a parenting role. one mother said, "His sister is 14, and she takes care of him as I would." one parent had identified one of her other children as the long-term caretaker of the affected child in case the parents died or became disabled.
Leisure-time activities. Parents reported that they had little leisure time because they had to plan everything ahead of time. One mother stated, "It's really limited our activities outside of the home. If we all want to go for a bike ride, we have to take all these precautions. You can't get on a bike and go for a 5-mile bike ride anymore." Life often centered on the affected child, and the activities chosen were based on the child's abilities. Some parents did not complain of the limitations. When asked what they did for leisure activities, they stated that they normally stayed home and played games or watched movies. One mother said, "My husband and I figure that this is the time of our lives that we devote to our children, and so we just plan our activities to accommodate them."
Support from extended family. Parents talked about their support system or lack of support in handling their child's problem behaviors. Some parents had the support of a spouse, and those families appeared to work together with the child. Other parents talked about extended families, but grandparents, aunts, and uncles often were not comfortable with giving care to the child, one mother said, "His grandparents won't help because they can't manage his behavior, and I won't let them see their other grandchild if they won't take both." Two mothers talked about the inability to use help from friends. One mother said, "I'm afraid to leave her with anyone, because I am afraid she will get hurt."
Interactions with School
There were accounts of both positive and negative interactions with school teachers and administrators. Themes in this category were communication with teachers, administrators, and the school nurse; transition plans; safety issues within the school; and the child's socialization socialization /so·cial·iza·tion/ (so?shal-i-za´shun) the process by which society integrates the individual and the individual learns to behave in socially acceptable ways.
Communication. Poor communication with school personnel was a source of stress for many parents. They complained that their concerns often went unheard un·heard
1. Not heard: unheard pleas for help.
2. Not given a hearing; not listened to: unheard objections.
3. . One mother stated, "It was horrible. They would not listen to me, and they wouldn't listen to [my child]." Parents often believed that, despite their best efforts, their children's needs were not being met. Some reported that the school's goals for their children were not congruent con·gru·ent
1. Corresponding; congruous.
a. Coinciding exactly when superimposed: congruent triangles.
b. with their own. One mother stated, "It's really not his placement, it is just what they have. I think the school wants him to meet their needs." Another mother, describing what she believed was an incorrect placement in a class of children with severe behavioral problems, stated, "I don't want him to practice being a problem; I want him to practice being the best in his group."
For other families, communication with the school was limited. Five parents stated that they never really talked to the teacher. One mother said, "No, I don't talk to them. They just send notes." When asked about the individualized in·di·vid·u·al·ize
tr.v. in·di·vid·u·al·ized, in·di·vid·u·al·iz·ing, in·di·vid·u·al·iz·es
1. To give individuality to.
2. To consider or treat individually; particularize.
3. educational plan (IEP IEP
In currencies, this is the abbreviation for the Irish Punt.
The currency market, also known as the Foreign Exchange market, is the largest financial market in the world, with a daily average volume of over US $1 trillion. ), which is developed for every child with special needs, one mother said, "Well, I don't go for them. They just send me a copy." Another mother referred all communication from the school to the child's father, who lived elsewhere. These parents did not complain about the school, but they also did not communicate or have a collaborative relationship with the school, even though their child had serious learning problems and was at least one grade level behind his peers.
Three parents reported that they had good communication with the school and were happy with the way their child was being educated and cared for. These parents saw themselves as their child's advocate. As one parent stated, "I might have been a little annoying in their eyes, but I felt that I was her advocate and how else are they going to know unless I let them know?" These parents believed that they had to be present for their child and that, when they expressed concerns, the schools tried to address those concerns. A father said succinctly suc·cinct
adj. suc·cinct·er, suc·cinct·est
1. Characterized by clear, precise expression in few words; concise and terse: a succinct reply; a succinct style.
2. , "Parents who are visible get more services for their children."
Transition issues. Almost all parents discussed school-based training for transition from adolescence to adulthood and independent living. Most expressed hope that their child would be able to live independently, but they were discouraged that the relevant transition skills were not being addressed in the schools. One mother stated, "Well, she is just sitting in class when they do algebra algebra, branch of mathematics concerned with operations on sets of numbers or other elements that are often represented by symbols. Algebra is a generalization of arithmetic and gains much of its power from dealing symbolically with elements and operations (such as , and she listens, but she'll do other work; so she'll just sit in class. But I went to the teacher and said these are the issues: She needs to know how money works, and how time works, and how to balance a checkbook."
Child safety. Parents often expressed concern about their children's safety in school. One mother believed that teachers and other school personnel were not knowledgeable about seizures. Some parents had initiated a training program for the school but felt resentful re·sent·ful
Full of, characterized by, or inclined to feel indignant ill will.
re·sentful·ly adv. that they had to take on that role. One mother stated, "I actually had to put in her IEP that every year I do an in-service, and they said, 'Why do all the teachers have to be there?' Well, what happens if somebody has a seizure on the playground?" Two mothers were concerned because there was no nurse at the school. Both parents spent a considerable amount of time advocating for a school nurse to be assigned to the school.
Socialization. Almost all of the parents discussed their child's problem in making friends. This problem, while most obvious in school, seemed to pervade per·vade
tr.v. per·vad·ed, per·vad·ing, per·vades
To be present throughout; permeate. See Synonyms at charge.
[Latin perv all areas of life. A few parents said, "My child has no friends." Others reported that their child's behavior interfered with the ability to make friends. Many parents suggested that poor self-esteem and a lack of friends were related. One mother said, "He never gets invited to parties or anything, and I can understand that." She went on to say, "Every once in a while, he will say that he hates himself." Some parents blamed the child's seizures for the socialization problems. One mother said, "He doesn't really have friends outside of school. When he has a seizure at school it disrupts everything and embarrasses him."
Three parents worked with the other children in their child's classroom to increase understanding about their child's problem. In addition, they worked hard to build their child's self-esteem. One mother stated, "I try to give her as many normal experiences as possible."
Support Within the Community
Eight parents said that they would like to have community support, but only a few could articulate what type of support they could use. During the interviews, however, several concerns surfaced that might be addressed by community programs. They included work issues and financial concerns, family counseling, and respite care Respite Care
Short-term or temporary care of a few hours or weeks of the sick or disabled to provide relief, or respite, to the regular caregiver, usually a family member.
Work issues and financial concerns. Several mothers discussed problems related to work and family management, including the need to leave work to pick up the child at school, frequent absences from work because of the child, and the need to quit school because of the child's condition. One mother said, "The principal said 'Well, when I can't get a hold of you, I am going to have to call the police.' I'm like, I'm in a meeting." These parents worried about finances. Some complained that they did not have the money to obtain special services that would help their child, such as a summer camp for disabled children. Two divorced mothers complained that the child's father's failure to help financially increased their financial worries.
Family counseling and respite care. Only three parents stated that family counseling would have been useful to save their marriage and to help the siblings. As explained by the mother of a teenage daughter who had had epilepsy since she was age 5, "I've had to work very, very hard in making it the well-rounded family. It just didn't come. I think that we could have really benefited from family therapy."
Although only two parents discussed respite care, many parents talked about needing a break from their child. One mother stated, "I feel like we are joined at the hip. I am always with him." Another mother stated that she would love to get away but that there was not a safe place to leave her child. One parent said that when she had left her child in respite care, he had been inappropriately medicated medicated /med·i·cat·ed/ (med´i-kat?id) imbued with a medicinal substance.
contains a medicinal substance. .
This study identified the sources of stress for parents of children with both epilepsy and serious learning problems. The areas related to the child, health care, family, school and community emerged as those most experienced by parents. Although we were primarily interested in sources of the parents' problems, the most striking finding was the intensity of the problems. How painful it must be for a parent to report that their child has no friends. How frustrating frus·trate
tr.v. frus·trat·ed, frus·trat·ing, frus·trates
a. To prevent from accomplishing a purpose or fulfilling a desire; thwart: it must be for parents' concerns to fail to be addressed by health or school professionals. How difficult it must be for parents to need to continually defend their child and act as an advocate to secure the care they believe the child needs and is entitled to. The impact had been devastating dev·as·tate
tr.v. dev·as·tat·ed, dev·as·tat·ing, dev·as·tates
1. To lay waste; destroy.
2. To overwhelm; confound; stun: was devastated by the rude remark. for some families, placing an extreme burden of worry and stress on the parents. It is imperative that healthcare providers, particularly nurses, help these parents and children cope with the burden of the dual diagnosis.
Many of our findings were similar to findings about children with intellectual disability alone. For example, parental worry about the future has been described in research on children with mental retardation (Floyd & Gallagher, 1997). Other problems appear to be specific to this population, such as worry about a child being injured or dying during a seizure (Hoare, 1993). An important finding of this study was the impact of the constellation of problems the families experienced. The double-ABCX model provides a framework for understanding the pileup of stress (McCubbin & Patterson, 1983). We found that all of the parents had a series of problems that might be considered a pileup of stressors related to their child's illness. For example, some parents seemed overwhelmed o·ver·whelm
tr.v. o·ver·whelmed, o·ver·whelm·ing, o·ver·whelms
1. To surge over and submerge; engulf: waves overwhelming the rocky shoreline.
a. by the seriousness of the seizures and the child's behavioral problems. These two issues affected almost all areas of their lives and contributed to their overall stress. Because they were dealing with these serious and immediate needs, they may have been unable to address other concerns such as the child's future. For example, when a parent is called to the school because of the child's problematic behavior, behavior becomes the pressing issue to be dealt with, and issues such as long-term transition needs are less likely to be addressed. Moreover, being called to school regularly may affect the parent's ability to work. Our findings support literature suggesting that parents of children with intellectual disability may have more economic constraints (Emerson, 2003; Hauser-Cram et al., 2001).
Parents discussed how their child's presence in the family affected the family dynamics. Most frequently, parents discussed changes in family roles. For example, siblings often assumed a caretaker role in relation to their ill sibling. This was not always a negative, however; some siblings displayed genuine concern for their ill brother or sister. In contrast, others felt anger toward their ill sibling. These behaviors might be attributed to family functioning. One study showed that mothers rated the healthy siblings' adjustment higher if the mothers had confidence in their own ability to manage the child's illness and if the marriage was strong (Gallo, Breitmayer, Knafl, & Zoeller, 1993). These findings point out the necessity of the evaluation and probable inclusion of siblings when working with families. Further exploration of the burden experienced by siblings is warranted.
The lack of social support from the community was unfortunate, because this is one resource that might help parents meet the demands of caring for their child. In previous studies, parents who reported satisfaction with support networks also reported fewer emotional problems (Dunst, Trivette, & Cross, 1986; Sheeran, Marvin, & Pianta, 1997). Support might come from spouses, extended family members (e.g., grandparents), friends, or people in the community. In previous research, satisfaction with outside support has been correlated with satisfaction with family functioning (Snowdon et al., 1994). This is important, because family functioning is a predictor of parental stress (Dyson, 1993). Therefore, one way to improve family functioning and decrease parental stress might be to help parents improve their support system.
It is not surprising that communication with schools was a source of parental stress. Children spend much of their day in school and these children were experiencing serious learning problems. Parents had to work hard to achieve good communication with the school. Many parents talked about the disparity between their goals and the teachers' or school's goals for their child. All parents discussed their worry about their child's future. Because these children were only mildly delayed, parents might have assumed that their child would one day live independently Thus, they were looking for assistance toward this goal from the school. Parents, teachers, and school administrators need to collaborate to develop plans that address both present and future expectations for the child and create strategies to help the child meet goals. Teaching independent-living skills would be one such strategy.
Other sources of stress within the school included concern about the child's safety (e.g., injury during a seizure). Research has shown that parents of children with new-onset seizures worry about how to handle seizures in school (Shore et al., 1998). This might be an even greater problem for children who have chronic seizures and limited cognitive abilities and thus, possibly, limited judgment about safety issues. Some school nurses are well-educated about seizure management. However, in many schools there are no school nurses or the nurses lack adequate knowledge about seizures. Although little research exists, two early studies indicated that workshops can be effective in educating teachers about epilepsy (Dreisbach, Ballard, Russo, & Schain, 1982; Rassel, Tonelson, & Appolone, 1981).
Although most parents reported that they liked their healthcare providers, they had many complaints about the health care they had received. For example, many parents complained about the delay in obtaining an accurate diagnosis for their child. It is possible that the frustration associated with this delay negatively influenced their later interactions with healthcare personnel. Despite complaints, parents were not able to articulate either what they expected from their healthcare providers or how they felt their healthcare providers might better help their child. Ideally, parents should not have to figure out the next step for their child's health care and should be able to depend on their healthcare providers to supply this direction. However, our interviews indicate that this was not always the case. These children were in need of comprehensive care, but their care was often narrowly focused on seizure control. The poor communication between parents and physicians is not totally surprising, considering reports that emergency room patients rarely are able to completely explain their presenting problem and that the average time before interruption by a physician during a visit is 12 seconds (Rhodes et al., 2004).
Implications for Nursing Practice and Research
It is clear that the parents of children with both epilepsy and intellectual disability in this sample were experiencing many stressors, some of which are unique to the dual nature of their child's disorder. Some of these sources of stress involved psychosocial care needs related to information and support (Farmer, Marien, Clark, Sherman, & Selva, 2004; Rhodes et al., 2004; Shore et al., 1998). Past research has shown that parental stress is related to child outcomes (Austin et al., 2004; Carlton-Ford, Miller, Brown, Nealeigh, & Jennings, 1995). Austin (1996), in presenting a model for family adaptation to childhood epilepsy, proposed that not only child characteristics but also family demands and resources affect parent and child coping responses and that providing psychosocial nursing care can facilitate good parental and family adaptation. Therefore, assessing family stressors and care needs and helping parents to identify resources and develop coping skills have the potential to improve child outcomes. An important step in helping parents in this process is to assess their stressors and psychosocial care needs. Families rarely bring all of their problems to their physician. Because many stressors arise from a child's medical condition, nurses are uniquely positioned to help parents address these sources of stress. Fig. 1 is a list of potential parental stressors that nurses can use for assessment. Strategies for assisting parents should include assessing for the problem, educating when appropriate, and referring when necessary. Nurses must also understand that, despite their best intentions, they cannot help all parents solve all their problems. Therefore, another important strategy is to simply be a good listener so that parents can have a way to share their frustrations.
This study suggests that parents of children with both epilepsy and intellectual disability experience a pileup of stressors, which family resources are frequently inadequate to meet. Nurses are ideally situated to identify the needs of these parents and to intervene. Unfortunately, there are very few documented nursing interventions (e.g., patient education) to assist these families. It will be of great importance to develop and test interventions that would ease their difficult burden.
This research was funded in part by grant P30 NR05035 from the National Institute of Nursing Research (NINR NINR National Institute of Nursing Research
NINR No Income No Ratio (credit) ), National Institutes of Health, to the Center for Enhancing Quality of Life in Chronic Illness at Indiana University Indiana University, main campus at Bloomington; state supported; coeducational; chartered 1820 as a seminary, opened 1824. It became a college in 1828 and a university in 1838. The medical center (run jointly with Purdue Univ. School of Nursing; and by grant R01 NR04536 from NINR and a supplement from the Office of Rare Diseases to Joan Austin. We thank P. Dexter for editorial comments and S. Wiesinger and J. Critchfield for editorial assistance.
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Questions or comments about this article may be directed to Janice M. Buelow, PhD RN, at firstname.lastname@example.org or 317/274-9639. She is an assistant professor at Indiana School of Nursing, Indianapolis, IN.
Angela McNelis, PhD RN, is an assistant professor at Indiana University School of Nursing, Indianapolis, IN.
Cheryl P. Shore, PhD RN, is an assistant professor at Indiana University School of Nursing, Indianapolis, IN.
Joan K. Austin, DNS (Domain Name System) A system for converting host names and domain names into IP addresses on the Internet or on local networks that use the TCP/IP protocol. For example, when a Web site address is given to the DNS either by typing a URL in a browser or behind the RN FAAN FAAN
Fellow of the American Academy of Nursing , is a distinguished professor at Indiana University School of Nursing, Indianapolis, IN.
Table 1. Sources of Stress for Parents of Children with Epilepsy Category Subcategory Concerns about the child Future and transition issues Behavioral problems Consequences of seizures Communication with healthcare Medication problems providers Need for information Time to diagnosis Changes in family relationships Marital relationship Sibling relationships Leisure-time activities Support from extended family Interactions with school Communication Transition issues Child safety Socialization Support within the community Work issues and financial concerns Family counseling and respite care Fig 1. Family assessment guide Date Assessment Item Discussed Worries about child My child's behavior -- My child's future -- My child's being injured during a seizure -- My child's cognitive status because of seizures -- Medical care Problems with medications -- Need for information -- Child's diagnosis -- Family My relationship with my spouse or significant other -- My child's relationships with siblings -- The other children's role in the family -- My time to parent all my children -- Time for leisure activities -- School My interaction with teachers -- My interaction with administrators -- My interaction with the school nurse -- My child's learning the things needed to be independent -- My child's safety in school -- My child's ability to make friends in school -- Community Problems with work -- Problems with finances -- Family support -- Respite care --