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Parental coping and childhood epilepsy: the need for future research.

ABSTRACT

Parents of children with epilepsy, like parents of children with many other chronic conditions, are faced with a constant feeling of uncertainty about their child's condition. This uncertainty can lead to a decreased ability to cope as evidenced by increased stress levels, negative mood states, and impaired family functioning. Because altered coping in the parent may have a profound negative impact on the child's psychosocial adjustment to living with a chronic condition, it is important to identify ways to facilitate positive coping skills in the parent. The purpose of this review was to critically analyze the existing literature related to the challenges associated with parenting a child who has epilepsy. Interventions geared toward facilitating coping in parents will also be reviewed, and gaps in the literature will be identified. Lastly, future implications for nursing research will be discussed.

Statement of Problem

Chronic illness is a widespread problem in pediatrics. Chronic illness can be defined as "a chronic condition that is continuous or persistent over an extended period; a chronic condition is one that is long-standing, and not easily or quickly resolved" (Medline Plus, 2006). Medical advances have provided us with the capability of treating pediatric conditions that were at one time considered life threatening. As a result, there is a growing population of children within the United States that are now living with chronic conditions. It has been estimated that 14% of children living in the United States have a special healthcare need. Activities of daily living are affected in up to 25% of this population, and 42% of these children have behavioral or emotional difficulties because of their chronic condition (U.S. Department of Health and Human Services, 2008). Parents of children who are diagnosed with a chronic condition often find themselves in unfamiliar territory. These parents not only have to learn how to adjust to the developmental delays often experienced by a child with a chronic condition, but they also have to learn to incorporate things like medication, medical equipment, and periodic hospitalizations into their daily routine. These parents suddenly find themselves facing an uncertain future for themselves and their child.

Epilepsy is a common chronic condition that often begins in childhood. There are some startling statistics that demonstrate the prevalence of this problem. Each year, 150,000 children and adolescents will have a newly occurring seizure of some type; of those, 20% will develop epilepsy. There are currently more than 2 million Americans who have epilepsy; 50% of those cases began in childhood. A seizure of any type will be experienced by 4% to 10% of all children by age 20 years; 1% will be diagnosed with epilepsy (Hirtz & Nordi, 2002). Parents of children diagnosed with epilepsy face a unique set of challenges. Because of the unpredictable nature of childhood epilepsy, parents find themselves facing an uncertain future for themselves, their child, and their family. This uncertainty can lead to a decreased ability to cope as evidenced by increased stress levels, negative mood states, and impaired family functioning. Parents struggle with the idea that their dream of having a perfect child is suddenly gone, and they find themselves unaware of how to care for their own child (Mu, 2008). Parents need to quickly learn how to respond to this crisis situation and modify the daily activities of the family to accommodate the emotional and physical needs of themselves and their children. It is common for parents of children with epilepsy to experience symptoms consistent with posttraumatic stress disorder and major depressive disorder (Iseri, Ozten, & Aker, 2006). It is essential that the parents maintain their coping strategies because the psychological well-being of a parent is directly related to family functioning. If a family is not able to function, there may be a profoundly negative impact on the child's psychosocial adjustment to living with a chronic condition (Thornton et al., 2008). Children with epilepsy have been found to have an increased incidence of psychological and behavioral problems even when compared with children with other types of chronic illness (Austin & Dunn, 2000; Oostrom, Schouten, Kruitwagen, Peters, & Jennekens-Schinkel, 2001).

Parents of children with epilepsy, like many other chronic conditions, need to learn how to cope with stress that is ongoing, unlike the child who experiences a critical illness and then recovers normal function. It is important for nurse researchers to develop interventions aimed at introducing new or supporting known effective coping strategies among this population. Complications of epilepsy may affect the entire family, but early intervention may decrease the incidence of negative sequelae often associated with the disorder.

The purpose of this review was to critically analyze the existing literature related to the psychological and emotional challenges associated with parenting a child who has epilepsy. Interventions geared toward facilitating coping in parents of children with epilepsy will also be reviewed, and gaps in the literature will be identified. Lastly, future implications for nursing research will be discussed.

Methods

A literature search was conducted using a variety of healthcare databases, including CINAHL, Medline, and PsychInfo. An initial search for articles using the term epilepsy resulted in more than 70,000 articles. When the search term was refined to be specific for pediatric epilepsy, only 305 articles were found. All of the titles were reviewed to identify articles that were specific to parenting a child with epilepsy. Once significant studies were retrieved, the footnotes within each of those articles were examined for possible relevance. Authors were then identified within the literature that had done work with this population, and a search of additional citations was performed to find any pertinent studies. The articles were then retrieved and examined for possible inclusion. The final sample was limited to articles published in English between 1995 and 2009. Only research articles pertaining to the experience of parenting a child with epilepsy, the effect a parent has on a child with epilepsy, or the interventions geared toward parents of children with epilepsy were included. To obtain a comprehensive review, studies including one or both parents were included, and there was no restriction concerning age of the child or severity of their illness. Articles excluded were those that related to the medical management or diagnosis of a seizure disorder. The purpose of this exclusion was to narrow the focus of the review to issues surrounding parenting. The final number of articles included in this review was 34. The final sample of the literature focused on the experience of parenting a child with epilepsy and how the parents' well-being affects the child's adjustment to his or her illness.

Psychological Effects

Stress

Parenting a child with epilepsy can be a significant source of stress. This is significant because as stress increases, family functioning seems to decrease resulting in an increase in child behavior problems (Buelow, McNelis, Shore, & Austin, 2006; Rodenburg, Meijer, Dekovic, & Aldenkamp, 2007; Wirrell, Wood, Hamiwka, & Sherman, 2008). Buelow et al. (2006) conducted semistructured interviews with 20 parents of adolescents with epilepsy who also had some degree of intellectual disability and identified areas of parental stress as follows: worry about child, need for additional information, family relationships, communication, community support, and finances. These stressors can also affect the ability of the parents to maintain their function within the family. Kopp, Muzykewicz, Staley, Thiele, and Pulsifer (2008) measured psychological symptoms in 99 parents of children with epilepsy from tuberous sclerosis and found that these parents exhibited an increase level of stress related to dysfunctional parent--child interactions and difficult child characteristics. These difficult child characteristics were defined as recent seizures, psychiatric diagnosis, low intelligence, and behavioral problems (Kopp et al., 2008). Rodenburg et al. (2007) found that stress in parents of children with epilepsy was a prevalent problem. In this study, parental stress was increased in parents who were depressed, used emotion-focused coping strategies, or who had children with low functional status. It has also been found that parental stress could be decreased when there is adequate family cohesion, social supports, and problem-focused coping strategies (Rodenburg et al., 2007; Shore, Austin, & Dunn, 2004). Cushner-Weinstein et al. (2008) found that parents of children with epilepsy experienced stress from uncertainty about their parenting role as well as having a child with depression or learning disabilities.

Anxiety

In addition to stress, parents of children with epilepsy have an increased incidence of mental health problems. In particular, parental anxiety has a significant impact on the quality of life of the child with epilepsy as well as the ability of the child to adapt to living with epilepsy. Aytch, Hammond, and White (2001) found that parents of children with seizures had the highest level of anxiety in the first few months after the diagnosis of epilepsy had been made. However, Mu (2008) interviewed 18 parents of children with epilepsy between the ages of 3 and 7 years. Parents in this group reported ongoing anxiety with every seizure their child experienced, including fear that the child might die during the event. It is important to note that anxiety in the parent has been found to be influenced by the severity of the child's illness (Chapieski et al., 2005), socioeconomic status, coping resources, and stress (Williams et al., 2003). Seizure type or frequency has not been shown to affect anxiety (Chapieski et al., 2005; Williams et al., 2003). These high levels of maternal anxiety may result in overprotectiveness (Chapieski et al., 2005; Mu, 2008; Wirrell et al., 2008) and an increased expression of emotion (Hodes, Austin, Huster, Lane, & Perkins, 1999), which may result in a decreased ability for the child to maintain social relationships. This overexpression of emotion was not related to how many seizures the child was having (Chapieski et al., 2005; Hodes, Garralda, Rose, & Schwartz, 1999).

Depression

Parents caring for children with epilepsy often experience symptoms of depression. Thomas and Bindu (1999) surveyed 50 parents of children with epilepsy in India and found these parents to be experiencing frustration, depression, anger, guilt, and hopelessness. Depression may result from uncertainty, ambiguity, less education (Mu, Kuo, & Chang, 2005; Mu, Wong, Chang, & Kwan, 2001), severity of child's illness, perception of stigma, increased behavior problems in the child, lower satisfaction with family relationships, decreased social support, and lower socioeconomic status (Shore, Austin, Huster, & Dunn, 2002; Shore et al., 2004). Age of the child, gender, and number of years that the child has lived with epilepsy are factors that are not significantly related to parental depression (Shore et al., 2002; Mu et al., 2001, 2005). Mu et al. (2001) found that maternal age and ambiguity regarding the child's place in the family were predictors of depression among mothers of children with epilepsy. This may be related to the idea that when family boundaries are ambiguous, "mothers manage stress by being, in turn, strongly bounded with or detached from their children, trying to understand their children's behavior, feeling uncertainty about their parenting style, and developing unrealistic expectations of their children" (Mu et al., 2005, p. 274). Adewuya (2006) found that parental depression was related to a self-reported poorer quality of life in adolescents with epilepsy. Wu et al. (2008) conducted six parent focus groups where parents reported that their own depression negatively affected the emotional state of their children. Parents with lower socioeconomic status used more mental health services but reported more depression and higher incidence of behavior problems in their children (Wu et al., 2008). Kopp et al. (2008) and Wood, Sherman, Hamiwka, Blackman, and Wirrell (2008) also reported that depression in parents of children with epilepsy was directly related to and increase in behavior problems for the child. Chiou and Hsieh (2008) found that a higher level of parental depression was associated with a poor self-concept in the child with epilepsy.

Mu (2005) surveyed 210 fathers of children with epilepsy in Taiwan. This is the only article found in the literature that addressed fathers only. Mu found that the gender of the child, the paternal education level, the paternal age, and the intellectual ability of the child had no significant impact on depression in the father. There was, however, a positive correlation between uncertainty and depression and a negative correlation between opportunity for consultation, family cooperation, optimism, and depression (Mu, 2005).

Parent Role

Pal, Chaudhury, Das, and Sengupta (2002) found that parental adjustment to having a child with epilepsy was positively correlated with satisfaction of social supports and negatively associated with severity of the child's illness. Age or gender of the child, seizure type, parental education, and income did not have a significant impact on the parent's ability to adapt (Pal et al., 2002). Oostrom et al. (2001) found that 48% of the parents in their study were unable to continue what they considered to be their usual parenting roles after their child was diagnosed with epilepsy. Austin, Dunn, Johnson, and Perkins (2004) conducted a study involving 224 children with new onset seizures and their parents. The researchers found that parents who had less confidence about how to discipline their child also had a disorganized family environment. Children in these disorganized families demonstrated more behavior problems. The researchers also found that supporting the child's autonomy and worrying less helped to decrease behavior problems (Austin et al., 2004). Carlton-Ford, Miller, Nealeigh, and Sanchez (1997) also studied the effect a parent has on their child's outcome. The researchers found that an increase in illness severity and perceived stigma resulted in parents being overprotective. It was this sense of overcontrol that led to increased behavior problems in the child (Carlton-Ford et al., 1997). Aytch et al. (2001) found that "parenting tended to be characterized by heightened vigilance and monitoring of the child's activities, concerns about the ability of others to respond appropriately to seizures, and reluctance to leave the child in the care of relatives and friends" (p. 285). The hypervigilance often experienced in families of children with epilepsy is often due to the unpredictable nature of the seizures themselves (Iseri et al., 2006). Thornton et al. (2008) surveyed 98 families of children with epilepsy and found a moderate association between family function and behavioral problems in the child with epilepsy. With all of the challenges faced by parents of these children, "perceived stigma and disrupted family dynamics can also cause problematic behavioral and emotional outcomes in children" (Carlton-Ford et al., 1997, p. 383).

Parent Needs

To develop an intervention strategy that will adequately address some of these issues, it is necessary to first identify areas where parents feel more information is needed. Aytch et al. (2001) interviewed parents of 31 children, 5 years or younger, who had seizures. These parents reported a need for the following: information regarding the effect of seizures and medication on their child's development, what to do when the child had a seizure, available support services, information guides to share with relatives, and the opportunity to talk with other parents of children with epilepsy (Aytch et al., 2001).

Shore et al. (1998) interviewed parents of children between the ages of 4 and 14 years who had experienced their first seizure within the past 6 weeks. The researchers found that parents were generally satisfied with the information provided to them by the healthcare team, but they needed additional information about medication side effects and future management of seizures, including what to do if the child had a seizure at school. The parents in this study also reported their need for emotional support (Shore et al., 1998).

McNelis, Buelow, Myers, and Johnson (2007) conducted two focus groups with 12 mothers and 3 fathers of children with a diagnosis of epilepsy. The purpose of these focus groups was to gain a better understanding of the needs and concerns of these parents. Parents reported that they often had difficulty navigating the healthcare system and needed improved access to providers. Parents also discussed the most difficult aspects of parenting a child with epilepsy, including the following: changes in family roles, unpredictability of the seizure disorder, not having a long-term prognosis, need for ongoing emotional support, and need for education regarding the emotional and psychological impact epilepsy may have on their child (McNelis et al., 2007).

Interventions

There are relatively few interventions within the pediatric epilepsy literature that include both the children and their parents. Snead et al. (2004) developed a psychoeducational program for adolescents who had epilepsy and their parents. Seven adolescents completed this program with their parents, which consisted of six 1-hour content sessions regarding cognitive behavioral techniques, dietary needs, and medical aspects of epilepsy. Participants were also given educational materials from the Epilepsy Foundation. Premeasurement and postmeasurement of quality of life, depression, and anxiety revealed no significant changes (Snead et al., 2004).

Tieffenberg, Wood, Alonso, Tossutti, and Vicente (2000) conducted a randomized controlled trial to evaluate a program for 355 Spanish-speaking children between the ages of 6 and 15 years who had asthma (n = 188) or epilepsy (n = 167). This program was administered in weekly 2-hour sessions over a period of 5 weeks. Parents and children met in separate groups but were taught the same information, including learning about epilepsy, recognizing equilibrium, understanding treatment, handling risk situations, and developing decision making strategies. At the end of the program, children had improvement in knowledge, beliefs, attitudes, behaviors, and decreased fears about death and disruption in family life. Parents also reported an increase in knowledge (Tieffenberg et al., 2000).

"Be Seizure Smart" was developed by Austin, McNelis, Shore, Dunn, & Musick (2002) to provide information about epilepsy, to address concerns and fears, and to provide emotional support to 10 parents of children between the ages of 7 and 13 years who had epilepsy. The intervention consisted of a five-step nurse coached telephone intervention, which was administered over a 3- to 4-month period. Results of the study indicated that children had less general concerns, more knowledge, needed less additional information, and had higher family functioning scores. Parents also reported that they had more general knowledge, needed less information, and needed less social support (Austin et al., 2002).

Shore, Perkins, and Austin (2008) adapted a seizure education program for families of children living with epilepsy. This education program was delivered over the course of 2 days. The first part of the program focused on the medical management of epilepsy. The second part of the program addressed psychosocial concerns of families, including maintaining family relationships, coping with stigma, and educating the community about epilepsy. Of the 17 families who participated in the study, most were married, White, and college educated. At the completion of the program, parents reported that their knowledge of seizure management improved, but there was no impact on the level of parental depression or anxiety.

Jantzen et al. (2009) developed an educational program in Germany for children with epilepsy and their parents. This educational program consists of a 2-day course, which provides instruction on disease knowledge, techniques to enhance communication, and strategies for promoting self-management of the condition. One-hundred fifty-six well-educated parents completed this program. The results indicated that the ability to improve self-managing skills resulted in less anxiety in the parent.

Wohlrab et al. (2007) implemented an educational program for children with epilepsy and their parents in Germany called famoses. This intervention aims to improve knowledge about epilepsy, to teach families how to cope with the disease, and to increase participants' ability to become active members of their own treatment plan. The educational program is available in book format but may also be delivered in six separate lessons lasting 60 to 90 minutes each. Although this program is widely used throughout Germany and Switzerland, to date there are no published studies evaluating the effectives of the program (Wohlrab et al., 2007).

Gaps in Literature

Epilepsy is a phenomenon that has been well defined in the research literature. However, it was obvious after conducting this review that that focus has been on adult rather than pediatric epilepsy. Pediatrics is a field that emphasizes family centered care, yet only a handful of studies have been conducted in this area concerning the effects of caring for a child with epilepsy. Another problem with the scant amount of literature was that many of the reviewed studies were conducted using small sample sizes. From this existing literature, it would be difficult to generalize findings to a more general population. It is also important to note that many of these studies were not representative of different ethnic groups as the overwhelming majority of participants were White. Culture may have an important influence on the ability of a family to cope with chronic illness, and thus this should be studied in greater detail. This review has uncovered several important themes, but there are many areas where information is lacking in specifics for parenting children with the chronic condition of epilepsy.

Most articles focused specifically on mothers. Although a few of the studies included small numbers of fathers, this is an area that needs to be explored further. Also, all of these studies excluded children who had comorbid conditions. This strategy may be necessary to control for extraneous variables, but there is a large population of children who have epilepsy because of another chronic condition. These children may present with a variety of challenges for their families, and these families may be dealing with a unique set of stressors. Also, most studies centered on the adolescent with epilepsy, and there is certainly a need to explore how parenting a newborn or a young child affects the family system. All of these areas need to be further explored.

A few of the articles reviewed surveyed parents to determine what they felt they needed to better cope with their situation. The only way to develop an intervention for parents dealing with a child who has epilepsy is to ask them what information they are lacking. Only people living through this actual experience are in a position to tell researchers what would be helpful to them. More research needs to be done in this area as well.

Implications for Further Research

When a child is first diagnosed with epilepsy, a parent initially straggles with feelings of shock and disbelief. Before long, the parent becomes an expert in seizure management by becoming familiar with medications and diagnostic procedures. However, parents often lack the knowledge necessary to incorporate all of these nuances into their daily routine without disrupting family life. The constant worry and stress that comes from never knowing the developmental or physical prognosis of a child with epilepsy has a significant impact on the mental health of a parent. The review of intervention research demonstrates the need to address some of these issues. Parents should be instructed on how to recognize the signs and symptoms of anxiety and/or depression in themselves as well as in their children and where to access help for these issues. These symptoms may be subtle and missed by a primary care provider during a short office visit. If parents can successfully identify these symptoms, they can then seek the appropriate resources.

Although many researchers have identified the relationship between the effective parental coping and the improved psychosocial outcomes of children with epilepsy, little has been done to test interventions focused on improving the coping strategies of these parents. Most interventions that exist for parents consist of information pertaining to the management of symptoms or increasing medical knowledge about the seizures. Knowing that a child's adjustment to living with a chronic illness can be influenced by their parents, interventions need to focus on teaching parents ways in which to deal with the chronic uncertainty associated with epilepsy. Interventions should include strategies for not only dealing with the daily management of a seizure disorder but also how to deal with a child who is suddenly faced with the challenges associated with living with a chronic illness. For example, the literature supports the idea that children with epilepsy are at an increased risk for behavioral problems regardless of the severity of their illness. Parents, therefore, need to receive information on how best to respond to their child's behaviors to facilitate their emotional adjustment. This is crucial to ensure that the child will be able to reach their fullest potential.

Conclusion

Epilepsy in children is a unique chronic illness where constant uncertainty often results in psychosocial problems in both the child and his or her parents. Although some children will essentially outgrow their seizure disorder, many will live with epilepsy for the rest of their lives. How well these children are able to function as adults has an immense impact on our society as a whole. Pediatric nurses are in a position to intervene early on in the illness trajectory so that the family outcomes will be maximized. Future research in this area needs to centered on the family so that the best possible care can be provided to our patients and their families.

DOI: 10.1097/JNN.0b013e3182029846

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Questions or comments about this article may be directed to Lisa V. Duffy, PhD(c) CPNP-PC CNRN, at lisa.duffy@childrens. harvard.edu. She is a pediatric nurse practitioner at the Department of Neurology, Children's Hospital Boston, Boston, MA.
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Author:Duffy, Lisa V.
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Date:Feb 1, 2011
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