Children with new onset seizures: A prospective study of parent variables, child behavior problems, and seizure occurrence.

OBJECTIVE: Parent variables (stigma, mood, unmet needs for information and support, and worry) are associated with behavioral difficulties in children with seizures; however, it is not known how this relationship is influenced by additional seizures. This study followed children (ages 4-14 years) and their parents over a 24-month period (with data collected at baseline and 6, 12, and 24 months) and investigated the effect of an additional seizure on the relationship between parenting variables and child behavior difficulties. METHODS: The sample was parents of 196 children (104 girls and 92 boys) with a first seizure within the past 6 weeks. Child mean age at baseline was 8 years, 3 months (SD 3 years). Data were analyzed using t-tests, chi-square tests, and repeated measures analyses of covariance. RESULTS: Relationships between parent variables, additional seizures, and child behavior problems were consistent across time. Several associations between parent variables and child behavior problems were stronger in the additional seizure group than in the no additional seizure group. CONCLUSIONS: Findings suggest that interventions that assist families to respond constructively to the reactions of others regarding their child's seizure condition and to address their needs for information and support could help families of children with continuing seizures to have an improved quality of life.

Continuing psychosocial care needs in children with new-onset epilepsy and their parents.

Children with new-onset epilepsy and their parents have many psychosocial care needs, including concerns and fears and needs for information and support. No prospective studies address psychosocial care needs at 12 and 24 months after seizure onset. It is unknown if psychosocial care needs are associated with children's attitudes toward having epilepsy or with parental responses to their child's epilepsy. Our study addresses this knowledge gap. Members of 143 families took part in the study. Children were 8 to 14 years old and had at least two seizures. Parents and children completed Psychosocial Care Need Scales at 3, 6, 12, and 24 months after the first seizure. Children also completed the Child Attitude Toward Illness Scale, and parents completed the Parent Response to Child Illness scale. Data were analyzed using descriptive statistics and correlations. Although psychosocial care needs were highest at the 3-month data collection for both parents and children, some worries and concerns and needs for information and support persisted for 24 months. In children, more psychosocial care needs were associated with more negative attitudes toward having epilepsy. In parents, high psychosocial care needs were associated with a more negative impact on family life. A substantial number of parents and children have unmet psychosocial care needs that are associated with more negative child attitudes and a negative impact on family life, even 24 months after the onset of seizures. Nurses should assess both children and parents for these needs at every encounter with the healthcare system to address their needs.

Development of the parent response to child illness (PRCI) scale.

The aims of this study were to develop an instrument to measure parents' responses and perceptions related to the onset of either seizures or asthma in a child (aged 4-14) and to assess the initial reliability and validity of the instrument. The 35-item scale developed comprised five subscales: Child Support, Family Life/Leisure, Condition Management, Child Autonomy, and Child Discipline. Subjects were parents of 224 children with new-onset seizures and 104 parents of children with new-onset asthma. Internal consistency reliabilities were stronger for Child Support, Family Life/Leisure, and Condition Management than for Child Autonomy and Child Discipline for both samples. Test-retest reliability ranged from good to fair for both samples. The associations between parent positive mood and all of the subscales for both samples in the predicted directions provided key empirical support for validity. The scale has potential for use in research and in the clinical setting. In addition, the scale has potential to be used with other conditions.

Stressors of parents of children with epilepsy and intellectual disability.

Past research suggested that parents of children who have both epilepsy 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. 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.

Identifying risk factors for maternal depression in families of adolescents with epilepsy.

ISSUES AND PURPOSE: To investigate factors associated with depressive symptoms in mothers of children with chronic seizure disorders. DESIGN AND METHODS: A cross-sectional correlational design was used with a sample of 115 mother-child dyads in families where the child had chronic epilepsy. RESULTS: A three-factor model consisting of family income, satisfaction with family relationships, and presence of child behavior problems explained 32% of the variance in maternal depressive symptoms. PRACTICE IMPLICATIONS: Childhood epilepsy has a negative effect on the mother's mood in many families. Child behavior problems were found to be the strongest predictor of maternal depressive symptoms. Assessing for behavior problems and maternal depression should become a routine part of the family nursing assessment.

Management challenges in children with both epilepsy and intellectual disability.

People who have both epilepsy and intellectual disability have significant problems requiring skilled health care management. Clinical nurse specialists have the unique opportunity to work with these people and their families to help them develop self-management and family management skills. In this article, we describe some factors associated with intellectual disability and epilepsy. In addition, we address the management challenges associated with this dual diagnoses in 3 areas: (1) problems associated with the management of seizure and prescription management, (2) problems associated with the seizure management other than prescriptions, and (3) life management issues. Finally, we suggest ways that clinical nurse specialists can foster development of management skills.

The Seizures and Epilepsy Education (SEE) program for families of children with epilepsy: a preliminary study.

We investigated the usefulness of the Seizures and Epilepsy Education (SEE) program in improving quality of life, management of the seizure condition, and health care utilization in families having a child with epilepsy. Members of 15 families attended the program, with at least one parent from each family represented. Children attended if they were at least 12 years of age. Participants completed research instruments prior to attending the SEE program, and also 1 and 6 months after attendance. Both parents and children reported improvement in quality of life relating to child mental health after attending the SEE program. Parents reported reduced emotional impact of the child's condition, fewer worries, and greater knowledge related to epilepsy. Results suggest that attending the SEE program may be beneficial to families having a child with epilepsy; however, further study is needed with a more robust research design.

Childhood epilepsy: failures along the path to diagnosis and treatment.

Despite the importance of early diagnosis in childhood epilepsy, few published studies address the process of the child's entry into the health care system. The purpose of this article is to describe parental accounts of the diagnostic process and corresponding treatment for their children. We interviewed 21 parents of children who had both epilepsy and significant learning problems using semistructured open-ended interviews. During the interview, we asked parents to describe their child's medical history. Qualitative data analysis techniques were used to analyze the interviews. They revealed three system failures where the recognition and treatment of epilepsy fall short of an ideal diagnostic trajectory: (1) parents not seeking treatment for their child's epilepsy, (2) health care providers not recognizing seizures, and (3) health care providers not making accurate diagnoses or initiating inappropriate treatment. This study provides a foundation on which to build future studies.

Maternal adaptation to a child's epilepsy.

Mothers of children with epilepsy are at risk for problems in adapting to their child's condition; however, factors associated with maternal adaptation to a child's epilepsy have not been well articulated. The purpose of this study was to investigate the associations among maternal and child characteristics, maternal beliefs, and maternal adaptation outcomes. A conceptual model was formulated based on the literature. Maternal beliefs were proposed to mediate the relationships between maternal and child characteristics and maternal adaptation outcomes. A sample of 156 maternal-child dyads provided data via structured telephone interviews. Multiple regression analysis was used to test for additive and mediated relationships. Mediation was not supported statistically. Child behavior problems, maternal satisfaction with family, and maternal learned helplessness had the strongest associations with maternal outcomes, suggesting that maternal adaptation to a child's epilepsy is complex and includes multiple factors in addition to the child's seizure condition.