Parenting the daughter with epilepsy Joan Kessner Austin and Janet Austin Tooze Epilepsy affects ... more Parenting the daughter with epilepsy Joan Kessner Austin and Janet Austin Tooze Epilepsy affects every member of a family. A parent raising a young child with epilepsy has understandable concerns about the child's safety, but also understands that children need to run and ...
One approach to better understanding compliance behavior is the use of the theory of reasoned act... more One approach to better understanding compliance behavior is the use of the theory of reasoned action. In this article, the theory of reasoned action is used to predict the compliance behavior of 29 parents of children with epilespy. In support of the theory, behavioral intention was found to significantly predict (p less than 0.01) parental medicine-giving behavior. Contrary to the results predicted by the theory, parents' attitudes toward giving the medication correlated with a significant amount of variance in medicine-giving behavior beyond that accounted for by behavioral intention.
The quality of family functioning has been considered an important predictor of adaptation in chi... more The quality of family functioning has been considered an important predictor of adaptation in children with chronic conditions and their parents. Previous research suggests that beyond general family functioning, the specific experience of the family’s condition management is paramount for understanding family members’ adaptation. This study’s first goal was to compare family functioning and parents’ and children’s adaptation outcomes across four chronic conditions: asthma, diabetes, epilepsy, and obesity. Secondly, we explored the mediating role of family life difficulties and parental mutuality, as two potential paths through which family cohesion is linked to family members’ adaptation. A total of 263 parents of children (3–19 years old) with asthma (n = 77), obesity (n = 79), epilepsy (n = 52) and diabetes (n = 55) completed self-report measures of family cohesion, family life difficulty, parental mutuality, anxiety and depressive symptoms, and their children’s health-related quality of life (HrQoL). The results showed that families of children with diabetes, obesity, and epilepsy were at higher risk of experiencing family difficulties and children’s deteriorated HrQoL when compared to families of children with asthma. With regard to the links among study variables, although family cohesion had both a direct and indirect relationship with parental depressive symptoms, its links with parental anxiety symptoms and children’s HrQoL were only indirect, through family life difficulty. These associations were consistent across the four clinical groups. These findings emphasize the relevance of family-centered interventions aimed at promoting family cohesion, parents’ mutuality, and effective coping with the demands of pediatric chronic conditions.
Summary: We report results from the first part of an ongoing longitudinal study aimed at identify... more Summary: We report results from the first part of an ongoing longitudinal study aimed at identifying the relative contributions of demographic, seizure, and family variables in the prediction of behavior problems in children with epilepsy. We studied 127 children with epilepsy aged 8–12 years and their mothers. Self‐report questionnaires, interviews, and medical records were data sources. Backward and forward stepwise elimination procedures using multiple regression indicated five variables that contributed significantly to prediction of behavior problems: female gender, family stress, family mastery, extended family social support, and seizure frequency. These factors accounted for 29% (p < 0.001) of the variation in behavioral problems. Findings suggest that family variables are important correlates of behavior problems and should be considered in clinical management of children with epilepsy.
This chapter addresses common barriers to care delivery in psychogenic nonepileptic seizures (PNE... more This chapter addresses common barriers to care delivery in psychogenic nonepileptic seizures (PNES) and limitations of current approaches. Theoretical and practical considerations in delivering PNES care are discussed. These include a stepped-care approach, which offers a strategy for efficiently managing health care resources and has promise in treatment of PNES. Patient-centered care, a general approach to providing health care services in a manner that takes into consideration the patients’ expressed needs, desires, and preferences, is also considered. Examples of care models are presented, including a pediatric model for PNES recently developed and being tested in a Canadian hospital setting. Future directions for the development of care models in PNES are discussed and a list of recommendations is provided.
Epilepsy education and awareness are brought to the forefront in the following stories through in... more Epilepsy education and awareness are brought to the forefront in the following stories through innovative outreach, research, and marketing efforts.
In this article we identify the importance of studying behavioral problems in children with epile... more In this article we identify the importance of studying behavioral problems in children with epilepsy. After a brief discussion of the nature of common problems, we briefly review the literature on four groups of variables that are considered to be the major causes of such problems: neurological dysfunction, seizure condition variables, neuropsychological deficits, and child and family variables. We also describe the most commonly used instrument to measure child behavior problems and emphasize the need for prospective, longitudinal study designs. We end with a brief introduction to recent research findings that are challenging old assumptions about causes of behavior problems, and we make recommendations for studies that are needed to move the field forward.
Objectives Childhood epilepsy not only significantly impacts a child’s social relationships and p... more Objectives Childhood epilepsy not only significantly impacts a child’s social relationships and psychosocial wellbeing, but it can also cause disruptions in family relations. Children living with epilepsy often rely on parental figures for guidance in relation to their condition. A paucity of research has examined the challenges for children when communicating about epilepsy with parental figures. This qualitative study explored the challenges faced by children when talking about epilepsy with their parent(s). Methods Semi-structured interviews were conducted with 29 children (aged 6–16 years) living with epilepsy. Participants were recruited from a neurology department of a major pediatric hospital and from a national epilepsy association. Interviews were transcribed verbatim and thematically analyzed. Results Findings revealed four themes: communication impeding normalcy, parental overprotection, parental reactions to epilepsy-related communication, and restriction of activities as a consequence of epilepsy-related communication. Discussion The study highlights the need for a greater understanding of parent–child dialogue surrounding epilepsy and where challenges lie for children in conversing about their condition. Parents and health care professionals play a pivotal role in facilitating an environment where children feel comfortable talking about epilepsy. This information will be instrumental in the development of a communication-based intervention for families living with epilepsy.
The objectives of this study were to describe the treatment-related stressors of incenter hemodia... more The objectives of this study were to describe the treatment-related stressors of incenter hemodialysis patients, to identify relationships between stressors and selected demographic and illness variables, and to identify changes in stressors over time. Data were collected at two points in time, 3 months apart. The data were obtained from 86 patients in 2 inner-city midwest dialysis units. Structured interviews were conducted using one open-ended question and the Hemodialysis Stressor Scale. The greatest stressors were fluid limitations, the length of dialysis, and vacation limitations. There was a consistent trend for almost all stressors to become more intense over time, with some specific stressors increasing significantly. Patients new to dialysis and those with more education had relatively more stressors. An important serendipitous finding was that some treatment-related stressors were not troublesome because subjects chose not to follow certain treatment recommendations. In-depth evaluation in relation to individual stressors is required before adequate individual intervention strategies can be developed. Nurses need to be educated about the factors that are stressful to patients, so they can support them appropriately.
Parenting the daughter with epilepsy Joan Kessner Austin and Janet Austin Tooze Epilepsy affects ... more Parenting the daughter with epilepsy Joan Kessner Austin and Janet Austin Tooze Epilepsy affects every member of a family. A parent raising a young child with epilepsy has understandable concerns about the child's safety, but also understands that children need to run and ...
One approach to better understanding compliance behavior is the use of the theory of reasoned act... more One approach to better understanding compliance behavior is the use of the theory of reasoned action. In this article, the theory of reasoned action is used to predict the compliance behavior of 29 parents of children with epilespy. In support of the theory, behavioral intention was found to significantly predict (p less than 0.01) parental medicine-giving behavior. Contrary to the results predicted by the theory, parents' attitudes toward giving the medication correlated with a significant amount of variance in medicine-giving behavior beyond that accounted for by behavioral intention.
The quality of family functioning has been considered an important predictor of adaptation in chi... more The quality of family functioning has been considered an important predictor of adaptation in children with chronic conditions and their parents. Previous research suggests that beyond general family functioning, the specific experience of the family’s condition management is paramount for understanding family members’ adaptation. This study’s first goal was to compare family functioning and parents’ and children’s adaptation outcomes across four chronic conditions: asthma, diabetes, epilepsy, and obesity. Secondly, we explored the mediating role of family life difficulties and parental mutuality, as two potential paths through which family cohesion is linked to family members’ adaptation. A total of 263 parents of children (3–19 years old) with asthma (n = 77), obesity (n = 79), epilepsy (n = 52) and diabetes (n = 55) completed self-report measures of family cohesion, family life difficulty, parental mutuality, anxiety and depressive symptoms, and their children’s health-related quality of life (HrQoL). The results showed that families of children with diabetes, obesity, and epilepsy were at higher risk of experiencing family difficulties and children’s deteriorated HrQoL when compared to families of children with asthma. With regard to the links among study variables, although family cohesion had both a direct and indirect relationship with parental depressive symptoms, its links with parental anxiety symptoms and children’s HrQoL were only indirect, through family life difficulty. These associations were consistent across the four clinical groups. These findings emphasize the relevance of family-centered interventions aimed at promoting family cohesion, parents’ mutuality, and effective coping with the demands of pediatric chronic conditions.
Summary: We report results from the first part of an ongoing longitudinal study aimed at identify... more Summary: We report results from the first part of an ongoing longitudinal study aimed at identifying the relative contributions of demographic, seizure, and family variables in the prediction of behavior problems in children with epilepsy. We studied 127 children with epilepsy aged 8–12 years and their mothers. Self‐report questionnaires, interviews, and medical records were data sources. Backward and forward stepwise elimination procedures using multiple regression indicated five variables that contributed significantly to prediction of behavior problems: female gender, family stress, family mastery, extended family social support, and seizure frequency. These factors accounted for 29% (p < 0.001) of the variation in behavioral problems. Findings suggest that family variables are important correlates of behavior problems and should be considered in clinical management of children with epilepsy.
This chapter addresses common barriers to care delivery in psychogenic nonepileptic seizures (PNE... more This chapter addresses common barriers to care delivery in psychogenic nonepileptic seizures (PNES) and limitations of current approaches. Theoretical and practical considerations in delivering PNES care are discussed. These include a stepped-care approach, which offers a strategy for efficiently managing health care resources and has promise in treatment of PNES. Patient-centered care, a general approach to providing health care services in a manner that takes into consideration the patients’ expressed needs, desires, and preferences, is also considered. Examples of care models are presented, including a pediatric model for PNES recently developed and being tested in a Canadian hospital setting. Future directions for the development of care models in PNES are discussed and a list of recommendations is provided.
Epilepsy education and awareness are brought to the forefront in the following stories through in... more Epilepsy education and awareness are brought to the forefront in the following stories through innovative outreach, research, and marketing efforts.
In this article we identify the importance of studying behavioral problems in children with epile... more In this article we identify the importance of studying behavioral problems in children with epilepsy. After a brief discussion of the nature of common problems, we briefly review the literature on four groups of variables that are considered to be the major causes of such problems: neurological dysfunction, seizure condition variables, neuropsychological deficits, and child and family variables. We also describe the most commonly used instrument to measure child behavior problems and emphasize the need for prospective, longitudinal study designs. We end with a brief introduction to recent research findings that are challenging old assumptions about causes of behavior problems, and we make recommendations for studies that are needed to move the field forward.
Objectives Childhood epilepsy not only significantly impacts a child’s social relationships and p... more Objectives Childhood epilepsy not only significantly impacts a child’s social relationships and psychosocial wellbeing, but it can also cause disruptions in family relations. Children living with epilepsy often rely on parental figures for guidance in relation to their condition. A paucity of research has examined the challenges for children when communicating about epilepsy with parental figures. This qualitative study explored the challenges faced by children when talking about epilepsy with their parent(s). Methods Semi-structured interviews were conducted with 29 children (aged 6–16 years) living with epilepsy. Participants were recruited from a neurology department of a major pediatric hospital and from a national epilepsy association. Interviews were transcribed verbatim and thematically analyzed. Results Findings revealed four themes: communication impeding normalcy, parental overprotection, parental reactions to epilepsy-related communication, and restriction of activities as a consequence of epilepsy-related communication. Discussion The study highlights the need for a greater understanding of parent–child dialogue surrounding epilepsy and where challenges lie for children in conversing about their condition. Parents and health care professionals play a pivotal role in facilitating an environment where children feel comfortable talking about epilepsy. This information will be instrumental in the development of a communication-based intervention for families living with epilepsy.
The objectives of this study were to describe the treatment-related stressors of incenter hemodia... more The objectives of this study were to describe the treatment-related stressors of incenter hemodialysis patients, to identify relationships between stressors and selected demographic and illness variables, and to identify changes in stressors over time. Data were collected at two points in time, 3 months apart. The data were obtained from 86 patients in 2 inner-city midwest dialysis units. Structured interviews were conducted using one open-ended question and the Hemodialysis Stressor Scale. The greatest stressors were fluid limitations, the length of dialysis, and vacation limitations. There was a consistent trend for almost all stressors to become more intense over time, with some specific stressors increasing significantly. Patients new to dialysis and those with more education had relatively more stressors. An important serendipitous finding was that some treatment-related stressors were not troublesome because subjects chose not to follow certain treatment recommendations. In-depth evaluation in relation to individual stressors is required before adequate individual intervention strategies can be developed. Nurses need to be educated about the factors that are stressful to patients, so they can support them appropriately.
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