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Social context as a risk factor for psychopathology in children with epilepsy

  • Katharine Bailey
    Correspondence
    Corresponding author at: Queen's University, Department of Psychology, 62 Arch Street, Kingston, Ontario, K7L 3N6, Canada.
    Affiliations
    Queen's University, Department of Psychology, 62 Arch Street, Kingston, Ontario, K7L 3N6, Canada

    Trent University, Department of Psychology, Life and Health Sciences Building, Peterborough, Ontario, K9L 0G2, Canada
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  • Nancie Im-Bolter
    Affiliations
    Trent University, Department of Psychology, Life and Health Sciences Building, Peterborough, Ontario, K9L 0G2, Canada
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Open ArchivePublished:March 07, 2018DOI:https://doi.org/10.1016/j.seizure.2018.03.007

      Highlights

      • Social contextual factors place children with epilepsy at risk for psychopathology.
      • Proximal processes contribute to psychopathology in children with epilepsy.
      • Distal social structures indirectly influence development of children with epilepsy.
      • Norms and ideologies contribute to psychopathology in children with epilepsy.
      • Changes to healthcare may reduce risk of psychopathology in childhood epilepsy.

      Abstract

      Epilepsy is the number one neurological disorder in children in western society. Childhood epilepsy is highly comorbid with psychopathology. Although neurological and biological factors may partially explain the increased risk of psychopathology in children with epilepsy, social contextual factors are also important to understanding development of psychopathology in children with epilepsy. The current paper examines the development of children with epilepsy utilizing Bronfenbrenner's micro-, meso-, exo-, and macrosystem social contexts. Negative interpersonal interactions within the microsystems and the ripple effect of social context at the other levels may contribute to increased risk for psychopathology.

      Keywords

      1. Childhood epilepsy

      Epilepsy is a neurological disorder that involves two or more seizures that occur at least 24 h apart [
      • Fisher R.S.
      • Acevedo C.
      • Arzimanoglou A.
      • Bogacz A.
      • Cross J.H.
      • Elger C.E.
      • et al.
      A practical clinical definition of epilepsy.
      ] and is often attributed to unknown causes [
      • Scheffer I.E.
      • Berkovic S.
      • Capovilla G.
      • Connolly M.B.
      • French J.
      • Guilhoto L.
      • et al.
      ILAE classification of the epilepsies: position paper of the ILAE commission on classification and terminology.
      ]. Epilepsy is one of the most prevalent neurological disorders diagnosed world wide [
      • World Health Organization
      ] and at least 1% of the population will be diagnosed with epilepsy within their lifetime [
      • Russ S.
      • Larson K.
      • Halfon N.
      A national profile of childhood epilepsy and seizure disorder.
      ]. In Canada, there are 15 500 new cases of epilepsy reported every year, with childhood and early adolescent cases accounting for 30% of them [
      • Epilepsy Canada
      ]. Childhood epilepsy is associated with numerous comorbidities including social-emotional [
      • Jakovljević V.
      • Martinović Z.
      Social competence of children and adolescents with epilepsy.
      ,
      • Hamiwka L.D.
      • Hamiwka L.
      • Sherman E.M.S.
      • Wirrell E.
      Social skills in children with epilepsy: how do they compare to healthy and chronic disease controls?.
      ] and cognitive problems [
      • Baker G.
      • Spector S.
      • McGrath Y.
      • Soteriou H.
      Impact of epilepsy in adolescence: a UK controlled study.
      ,
      • Baum K.T.
      • Byars A.W.
      • deGrauw T.J.
      • Dunn D.W.
      • Bates J.E.
      • Howe S.R.
      • et al.
      The effect of temperament and neuropsychological functioning on behaviour problems in children with new-onset seizures.
      ,
      • Williams J.
      • Phillips T.
      • Griebel M.L.
      • Sharp G.B.
      • Lange B.
      • Edgar T.
      • et al.
      Factors associated with academic achievement in children with controlled epilepsy.
      ]. In the United States, results from the National Survey of Children's Health suggest that children diagnosed with epilepsy are more likely to be diagnosed with autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), and conduct problems compared to children never diagnosed with epilepsy [
      • Russ S.
      • Larson K.
      • Halfon N.
      A national profile of childhood epilepsy and seizure disorder.
      ]. Children with epilepsy are also more likely to exhibit both externalizing (e.g., verbal and physical aggression, poor self control) and internalizing behaviours (e.g., anxiety, sadness, loneliness, and low self esteem) than their siblings [
      • Hamiwka L.D.
      • Hamiwka L.
      • Sherman E.M.S.
      • Wirrell E.
      Social skills in children with epilepsy: how do they compare to healthy and chronic disease controls?.
      ,
      • Thornton N.
      • Hamiwka L.
      • Sherman E.
      • Tse E.
      • Blackman M.
      • Wirrell E.
      Family function in cognitively normal children with epilepsy: impact on competence and problem behaviours.
      ] or children with other chronic illness [
      • Hamiwka L.D.
      • Hamiwka L.
      • Sherman E.M.S.
      • Wirrell E.
      Social skills in children with epilepsy: how do they compare to healthy and chronic disease controls?.
      ]. In fact, Ott et al. [
      • Ott D.
      • Siddarth P.
      • Gurbani S.
      • Koh S.
      • Tournay A.
      • Shields W.D.
      • et al.
      Behavioural disorders in pediatric epilepsy: unmet psychiatric need.
      ] report that almost two thirds of children diagnosed with epilepsy meet criteria for psychopathology, which is 3–6 times greater than the population [
      • Baker G.
      • Spector S.
      • McGrath Y.
      • Soteriou H.
      Impact of epilepsy in adolescence: a UK controlled study.
      ].
      Given the predominance of psychopathology associated with childhood epilepsy, it is important to understand how different factors in the development of these children might put them at increased risk compared to their typically developing peers. Research suggests that depression and anxiety are correlated with a number of epilepsy attributes such as age of seizure onset, seizure frequency, and medications [
      • Cushner-Weinstein S.
      • Dassoulas K.
      • Salpekar J.
      • Henderson S.E.
      • Pearl P.L.
      • Gailllard W.D.
      • et al.
      Parenting stress and childhood epilepsy: the impact of depression, learning, and seizure-related factors.
      ,
      • Sabbagh S.
      • Soria C.
      • Escolano S.
      • Bulteau C.
      • Dellatolas G.
      Impact of epilepsy characteristics and behavioural problems on school placement in children.
      ]. Although this might suggest that epilepsy associated variables account for psychopathology there is an important interplay between biology and the environment that shapes development [
      • Champagne F.A.
      • Mashoodh R.
      Gene-environment interplay and the origins of individual differences in behaviour.
      ]. Thus, in order to fully understand risk factors for psychopathology in children with epilepsy we also need to consider contextual factors.
      An ecological systems model can be an effective framework for understanding the importance of contextual factors for individuals with disabilities [
      • Nelson J.R.
      • Lund E.M.
      • et al.
      Bronfenbrenner’s theoretical framework adapted to women with disabilities experiencing intimate partner violence.
      ]. Power et al. demonstrate how an ecological systems approach to training can assist practitioners in providing child-oriented care for children with health problems [
      • Power T.J.
      • Shapiro E.S.
      • DuPaul G.J.
      Preparing psychologists to link systems of care in managing and preventing children’s health problems.
      ]. This approach links different contexts (systems of care) to promote better outcomes. For example, an ecological systems model can be used when training psychologists so that they understand child health problems within multiple interacting contexts (e.g., medical, education, family systems). An ecological systems model highlights the need to consider multiple contexts to better understand psychopathology associated with health problems. Power et al. propose that practitioner training must include developing expertise in child and family assessment, intervention, and prevention in both healthcare and educational settings, as well as the promotion of interdisciplinary collaboration (e.g., medical, psychological, and educational specialists). Nelson and Lund suggest that all professionals (e.g., medical, clergy, education) who provide care to individuals with health concerns should understand the various contexts that influence well-being [
      • Nelson J.R.
      • Lund E.M.
      • et al.
      Bronfenbrenner’s theoretical framework adapted to women with disabilities experiencing intimate partner violence.
      ]. Hence, thorough understanding of the development of a child with healthcare problems involves understanding multiple contextual factors. The current paper utilizes Bronfenbrenner's [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ] ecological model of development to highlight the contextual factors that may play a role in increasing the risk for psychopathology in children with epilepsy.

      2. Bronfenbrenner's ecological model of development

      According to Urie Bronfenbrenner [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ], human development is shaped by reciprocal interactions between the individual and those in the immediate environment (e.g., parents, peers, teachers). These interactions are indirectly influenced by other social structures (e.g., interactions between parents, community resources, and culture) and become increasingly complex and enduring interactions (proximal processes). Individual personal characteristics (e.g., age, gender) may also influence these processes in addition to time (e.g., time span that proximal processes occur). Bronfenbrenner’s current model includes five subsystems of ecological context that impact development; the microsystem, mesosystem, exosystem, macrosystem, and chronosystem (see Fig. 1). Although the chronosystem is briefly described here, the four ecological contexts (microsystem, mesosystem, exosystem, and macrosystem) described in his earliest model are the primary focus of the current paper. The five systems are interconnected with each layer being nested within the next [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ,
      • Bronfenbrenner U.
      • Morris P.
      The bioecological model of human development.
      ]. The layer closest to the child is referred to as the microsystem and is comprised of the direct interpersonal interactions between the child and other individuals in his immediate environment (e.g., child-parent, child-peers, child-teacher). Since these interactions are reciprocal, the parent influences the child's behaviour and the child influences the behaviour of the parent. The microsystem is proposed to have the most impact on the development of the child, but the other levels also affect the child’s development.
      Fig. 1
      Fig. 1Bronfenbrenner’s Ecological Contexts.
      Encompassing the microsystem, is the mesosystem [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ]. This system is comprised of the interactions between the individuals in the child’s immediate environment, and as a result, these mesosystems indirectly influence the development of the child. For instance, how a mother interacts with her child may be influenced by the mother's relationship with her husband; if the mother is discontent with her marriage, her interactions with her child will differ compared to if she were happily married. Moreover, the mother-father relationship also impacts how the child and father interact, and how the three interact as a triadic unit.
      The mesosystem is nested within a larger social system, the exosystem. The exosystem is a system of interactions within social contexts that include the people (e.g., parents) within the child's immediate network (microsystem) as well as social contexts that do not include the child (e.g., parent’s workplace). These are distal systems that include things like social policy or legislation that indirectly impact the meso- and microsystems. Although the child does not have direct involvement in these contexts, the interactions at this level are still important to development. For instance, workplace policy may allow a parent to take as many paid sick days as needed to care for an ill child, reducing the stress associated with caring for a child. On the other hand (and perhaps more typically), days missed from work may result in reduced pay, lower promotion rates, and increased work load on days actually worked, thereby increasing stress levels and causing parental discontent, which in turn impacts the child. Moreover, workplace demands may also impact how parents interact with one another due to stress, which in turn, influences each parent’s interaction with the child. Thus, while the child may not be involved in the events that occur in the mesosystem, there are ripple effects on the child’s development.
      Similarly, a ripple effect occurs from the macrosystem, or culture, to the individual through the exo-, meso-, and microsystems [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ]. Ideologies, values, customs, and material resources are but a few aspects of culture that influence development. For example, many workplaces follow 9–5 work days, which means that many medical facilities are open at similar times as other workplace and school settings. Thus, parents may have to take time off work in order to take their children to doctor appointments. These appointments may not only cause the nature of the interactions between parent and child to change (e.g., parent and child have an opportunity to interact without siblings or other parent present, parent may be concerned about missed work and be distracted), but also the nature of the interactions between teacher and child (e.g., missed lessons and in-class work periods may lead to increased homework or instruction during times normally allocated for breaks).
      Lastly, the chronosystem [
      • Bronfenbrenner U.
      • Morris P.
      The bioecological model of human development.
      ] encompasses the consistency or change in aspects of the individual life with the passage of time. For example, a child can experience changes in family structure (e.g., divorce), educational status, health changes, and physical environment. Although the chronosystem is not explored in any detail here, it is important to keep in mind that changes in systems occur over time and have a different influence on the child depending on when the change occurs and the length of time that a child experiences the change in a system (e.g., later age of epilepsy onset is associated with higher depression and anxiety scores) [
      • Sabbagh S.
      • Soria C.
      • Escolano S.
      • Bulteau C.
      • Dellatolas G.
      Impact of epilepsy characteristics and behavioural problems on school placement in children.
      ].

      3. Microsystemic understanding of development in childhood epilepsy

      Seizures can occur at any time without warning, so it is not surprising that children and adolescents live in fear of having a seizure [
      • Asato M.R.
      • Manjunath R.
      • Sheth R.D.
      • Phelps S.J.
      • Wheless J.W.
      • Hovinga C.A.
      • et al.
      Adolescent and caregiver experiences with epilepsy.
      ,
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ,
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ]. Although many of these children do not recall experiencing the seizures themselves, they do experience the reactions of others [
      • Svoboda W.
      Childhood Epilepsy: The Language, Learning and Emotional Complications.
      ] and they report that they are treated differently by their parents, teachers, and peers [
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ,
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ].
      Reports by children and their parents during focus group discussions suggest that parenting a child with epilepsy may be permeated by guilt, shame, fear, and stress [
      • Wu K.N.
      • Lieber E.
      • Siddarth P.
      • Smith K.
      • Sankar R.
      • Caplan R.
      Dealing with epilepsy: parents speak up.
      ]. Parents report feeling responsible for their child's illness and concern about being confronted by their child about that responsibility [
      • Wu K.N.
      • Lieber E.
      • Siddarth P.
      • Smith K.
      • Sankar R.
      • Caplan R.
      Dealing with epilepsy: parents speak up.
      ]. A recent systematic review conducted by Jones and Reilly suggests that between 9 and 58% of mothers of children with epilepsy have anxiety scores that meet clinical criteria, with higher scores being associated with more frequent seizures and a greater amount of anti-seizure medication use [
      • Jones C.
      • Reilly C.
      Parental anxiety in childhood epilepsy: a systematic review.
      ]. Other research by Asato et al. [
      • Asato M.R.
      • Manjunath R.
      • Sheth R.D.
      • Phelps S.J.
      • Wheless J.W.
      • Hovinga C.A.
      • et al.
      Adolescent and caregiver experiences with epilepsy.
      ] suggests that family stress is felt by parents and children. They compared parent and adolescent views about living with epilepsy, using a self report and parent report health survey. Adolescents and parents reported high rates of family stress (31% and 41%, respectively). Moreover, children and adolescents alike claim that their parents obsessively worry about them [
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ,
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ]. These reports suggest that this sense of worry and concern being held by parents is being implicitly (e.g., simple restrictions on activities) or explicitly (e.g., verbal declarations and inquiries) expressed to their children. This has an impact on their child’s ways of thinking and behaving, putting them at increased risk of psychopathology. Current research does indicate that high levels of parental stress are associated with a lower sense of self-worth, and parental reports of internalizing and externalizing behaviour problems, in children and adolescents [
      • Chiou H.-H.
      • Hsieh L.-P.
      Comparative study of children’s self-concepts and parenting stress between families of children with epilepsy and asthma.
      ,
      • Im-Bolter N.
      • Anam M.
      • Cohen N.J.
      Mother-child synchrony and child problem behaviour.
      ].
      Certainly parental concerns shape how they behave with their children, and how children think, feel, and act with their parents. Research by Farmer and Lee [
      • Farmer A.Y.
      • Lee S.K.
      The effects of parenting stress, perceived mastery, and maternal depression on Parent–Child interaction.
      ] shows that high parental stress is associated with lower quality parent-child interactions, which may have a critical impact on emotion regulation, language development, and social cognitive skills [
      • Ensor R.
      • Hughes C.
      Content or connectedness? Mother–Child talk and early social understanding.
      ,
      • Barnett M.
      • Gustafsson H.
      • Deng M.
      • Mills-Koonce W.
      • Cox M.
      Bidirectional associations among sensitive parenting, language development, and social competence.
      ]. Adolescent children voice a dislike for the restrictions that parents put in place due to being excessively worried [
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ]. These restrictions serve to isolate the adolescent from their peers and prevent them from building good social relationships. Social relationships are critical to adolescents’ well-being and serve a protective function [
      • Steinberg L.
      Adolescence.
      ]. Lack of social relationships or poor quality social relationships place these adolescents at risk for social-emotional problems.
      Children with epilepsy also report that their mothers are more punitive compared to reports of healthy children [
      • Rodenburg R.
      • Meijer A.M.
      • Deković M.
      • Aldenkamp A.P.
      Family factors and psychopathology in children with epilepsy: a literature review.
      ]. Children and adolescents who are subjected to authoritarian parenting practices are more likely to report symptoms of depression [
      • King K.A.
      • Vidourek R.A.
      • Merianos A.L.
      Authoritarian parenting and youth depression: results from a national study.
      ]. Moreover, higher rates of punitive parenting are associated with poor school adjustment, behavioural problems [
      • Shumow L.
      • Lowe-Vandell D.
      • Posner J.
      Harsh, firm, and permissive parenting in low-income families: relations to children’s academic achievement and behavioural adjustment.
      ], and increased risk of anxiety [
      • Wang M.
      • Wang X.
      • Liu L.
      Paternal and maternal psychological and physical aggression and children’s anxiety in China.
      ]. In their review of the literature of psychopathology and family factors in childhood epilepsy, Rodenburg et al. [
      • Rodenburg R.
      • Meijer A.M.
      • Deković M.
      • Aldenkamp A.P.
      Family factors and psychopathology in children with epilepsy: a literature review.
      ] report that parents have lower educational and social expectations for their children diagnosed with epilepsy compared to their healthy siblings, but that fathers expectations exceeded their children's abilities. Additionally, fathers show less attention and affection to their children with epilepsy, yet are overprotective compared to their healthy peers, leaning towards inconsistent parenting. Moreover, some parents of children with epilepsy were found to have difficulty setting limits for their children. Thus, parents fail to help their children with epilepsy regulate their own behaviour, which can lead to negative consequences. Recent research does indicate that permissive paternal parenting is shown to be associated with more behavioural problems in children, externalizing behaviour in particular [
      • Tavassolie T.
      • Dudding S.
      • Madigan A.
      • Thorvardarson E.
      • Winsler E.
      Differences in perceived parenting style between mother and fathers: implications for child outcomes and marital conflict.
      ].
      Interpersonal interactions within the microsystem are not limited to parent-child interaction. The school environment is often given less attention when considering human development, but the interactions within this context are equally important [
      • Bronfenbrenner U.
      • Morris P.
      The bioecological model of human development.
      ]. Research suggests that the relationship between a child with epilepsy and his teacher may have its challenges. Wagner et al. [
      • Fournier N.M.
      • Calverley K.L.
      • Wagner J.P.
      • Poock J.L.
      • Crossley M.
      Impaired social cognition 30 years after hemispherectomy for intractable epilepsy: the importance of the right hemisphere in complex social functioning.
      ] report that academic achievement is one of the major concerns in conversations between teachers and parents of children diagnosed with epilepsy. Parent's also report that they find that teachers lack the required knowledge [
      • Wu K.N.
      • Lieber E.
      • Siddarth P.
      • Smith K.
      • Sankar R.
      • Caplan R.
      Dealing with epilepsy: parents speak up.
      ,
      • Im-Bolter N.
      • Anam M.
      • Cohen N.J.
      Mother-child synchrony and child problem behaviour.
      ] and understanding of epilepsy leading to discomfort and uncertainty when teaching their children [
      • Fournier N.M.
      • Calverley K.L.
      • Wagner J.P.
      • Poock J.L.
      • Crossley M.
      Impaired social cognition 30 years after hemispherectomy for intractable epilepsy: the importance of the right hemisphere in complex social functioning.
      ]. Almost 25% of parents report that they believe teachers are apprehensive about their child's seizures, regardless of whether or not seizures were well controlled. Indeed, this is consistent with research that investigates teacher confidence and knowledge with respect to teaching children diagnosed with epilepsy. Mott et al. [
      • Mott J.
      • Shellhaas R.
      • Joshi S.M.
      Knowledge of epilepsy and preferred sources of information among elementary school teachers.
      ] found that more than 50% of elementary school teachers in Michigan felt they lacked the necessary information about epilepsy in order to teach effectively [
      • Mott J.
      • Shellhaas R.
      • Joshi S.M.
      Knowledge of epilepsy and preferred sources of information among elementary school teachers.
      ]. Consistent with this are findings by Wodrich et al. that showed elementary and secondary teachers in Arizona knew less than half of the relevant facts about epilepsy even though they reported feeling confident about their ability to teach children with epilepsy effectively [
      • Wodrich D.L.
      • Jarrar R.
      • Buchhalter J.
      • Levy R.
      • Gay C.
      Knowledge about epilepsy and confidence in instructing students with epilepsy: teachers’ responses to a new scale.
      ]. Furthermore, although the majority of teachers who had students with epilepsy in their class were aware of the appropriate response during brief or prolonged seizures, their understanding of epilepsy was still quite limited. More than two thirds of teachers polled were not aware of the cognitive impairments (e.g., memory), educational impact (e.g., learning problems), or social risks (e.g., isolation) that are associated with epilepsy. Alarmingly, less than 7% of teachers were aware of increased risk of depressive symptomology.
      Hence, it is highly likely that teacher’s interactions with children in their classroom who are diagnosed with epilepsy are incongruent with student needs or abilities. When asked to discuss their perspectives about living with epilepsy, children between the ages of 7 and 12 reported that they felt their teachers worry, but lack understanding and fail to provide much needed support [
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ]. Other research suggests that teachers rate their students lower on academic achievement tests if they are aware the student is diagnosed with epilepsy as opposed to being unaware of the diagnosis [
      • Katzenstein J.M.
      • Fastenau P.S.
      • Dunn D.W.
      • Austin J.K.
      Teachers’ ratings of the academic performance of children with epilepsy.
      ]. Katzenstein et al. [
      • Katzenstein J.M.
      • Fastenau P.S.
      • Dunn D.W.
      • Austin J.K.
      Teachers’ ratings of the academic performance of children with epilepsy.
      ] argue that these findings are particularly important because when teachers have lower academic expectations, they pay less attention to the student, and provide less praise [
      • Katzenstein J.M.
      • Fastenau P.S.
      • Dunn D.W.
      • Austin J.K.
      Teachers’ ratings of the academic performance of children with epilepsy.
      ]. This is unfortunate given that teacher-student relationships are important for positive social interactions with teachers and schoolmates. For instance, students with close relationships with their teachers experience less conflict with their teachers, are more liked by their peers, and demonstrate better emotion understanding and regulation [
      • Garner P.W.
      • Mahatmya D.
      Affective social competence and teacher-child relationship quality: race/ethnicity and family income level as moderators.
      ,
      • Sette S.
      • Spinrad T.L.
      • Baumgartner E.
      Links among Italian preschoolers’ socioemotional competence, teacher–child relationship quality, and peer acceptance.
      ]. Moreover, longitudinal research shows that children with supportive teachers have a greater sense of school belonging and greater self-efficacy with respect to their academic achievement when assessed two years later [
      • Hughes J.N.
      Longitudinal effects of teacher and student perceptions of teacher-student relationship qualities on academic adjustment.
      ].
      Negative interactions in the school context are not limited to those between the child and the teacher. Students with epilepsy have fewer interactions with their peers due to increased school absenteeism [
      • Aguiar B.V.K.
      • Guerreiro M.M.
      • McBrian D.
      • Montenegro M.A.
      Seizure impact on the school attendance in children with epilepsy.
      ], limitations imposed by teachers [
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ], and parental restrictions [
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ,
      • Rodenburg R.
      • Meijer A.M.
      • Deković M.
      • Aldenkamp A.P.
      Family factors and psychopathology in children with epilepsy: a literature review.
      ]. Many of the peer interactions that do occur tend to be negative in nature as children with epilepsy experience isolation and victimization by their peers [
      • Hamiwka L.D.
      • Yu C.G.
      • Hamiwka L.
      • Sherman E.M.S.
      • Anderson B.
      • Wirrell E.
      Are children with epilepsy at greater risk for bullying than their peers?.
      ]. Feelings of isolation may be the result of behaviours on the part of both the child and his peers. In interviews with children and teenagers with epilepsy, Elliot et al. [
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ] found that they intentionally withdrew from their peers, isolating themselves, with efforts to limit their social interaction. McEwan et al. [
      • Mcewan M.J.
      • Espie C.A.
      • Metcalfe J.
      • Brodie M.J.
      Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods.
      ] and Baker et al. [
      • Baker G.
      • Spector S.
      • McGrath Y.
      • Soteriou H.
      Impact of epilepsy in adolescence: a UK controlled study.
      ] also found that adolescents with epilepsy were likely to avoid social situations as a means of preventing the fear that others exhibit when witnessing a seizure [
      • Mcewan M.J.
      • Espie C.A.
      • Metcalfe J.
      • Brodie M.J.
      Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods.
      ]. At the same time, both qualitative [
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ] and quantitative [
      • Baker G.
      • Spector S.
      • McGrath Y.
      • Soteriou H.
      Impact of epilepsy in adolescence: a UK controlled study.
      ,
      • Hamiwka L.D.
      • Yu C.G.
      • Hamiwka L.
      • Sherman E.M.S.
      • Anderson B.
      • Wirrell E.
      Are children with epilepsy at greater risk for bullying than their peers?.
      ] studies indicate that children with epilepsy are intentionally excluded from activities with their peers. Moreover, children with epilepsy report being teased and bullied by their peers [
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ,
      • Hamiwka L.D.
      • Yu C.G.
      • Hamiwka L.
      • Sherman E.M.S.
      • Anderson B.
      • Wirrell E.
      Are children with epilepsy at greater risk for bullying than their peers?.
      ]. Hamiwka et al. [
      • Hamiwka L.D.
      • Yu C.G.
      • Hamiwka L.
      • Sherman E.M.S.
      • Anderson B.
      • Wirrell E.
      Are children with epilepsy at greater risk for bullying than their peers?.
      ] investigated self reports of victimization and bullying behaviour in Canadian children diagnosed with epilepsy compared to children diagnosed with other chronic illness and typically developing children. They found that children diagnosed with epilepsy were more likely to feel isolated from their peers and were frequently victims of bullying behaviour compared to the other two groups. Lack of positive peer relationships can lead to negative self regard and increased risk of depression. Moreover, positive peer relationships can act as a protective factor for psychopathology [
      • Steinberg L.
      Adolescence.
      ].
      Certainly, all of the aforementioned negative interpersonal encounters with parents, teachers, and peers put children with epilepsy at risk for both internalizing and externalizing behaviours as a means of coping with these experiences. There are other individuals within the child's immediate social circle that are important as well, such as siblings and their pediatrician or neurologist. There is very little research with respect to these relationships and not all of these relationships are explored in the current paper; however, the impact of some of these individuals are considered with respect to the next social layer outlined by Bronfenbrenner[
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ,
      • Bronfenbrenner U.
      • Morris P.
      The bioecological model of human development.
      ]; the mesosystem.

      4. Mesosystemic understanding of development in childhood epilepsy

      Development is also impacted by interactions that do not directly include the child such as the interactions amongst the individuals within the microsystem (e.g., caregivers and teachers) [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ,
      • Bronfenbrenner U.
      • Morris P.
      The bioecological model of human development.
      ]. In group discussions, parents report that they feel responsible for educating their child's teachers about epilepsy. Indeed, elementary [
      • Mott J.
      • Shellhaas R.
      • Joshi S.M.
      Knowledge of epilepsy and preferred sources of information among elementary school teachers.
      ] and secondary [
      • Fournier N.M.
      • Calverley K.L.
      • Wagner J.P.
      • Poock J.L.
      • Crossley M.
      Impaired social cognition 30 years after hemispherectomy for intractable epilepsy: the importance of the right hemisphere in complex social functioning.
      ] school teachers indicate that they obtain much of their information about seizures and epilepsy from parents. Although teachers prefer to be informed by medical care providers [
      • Mott J.
      • Shellhaas R.
      • Joshi S.M.
      Knowledge of epilepsy and preferred sources of information among elementary school teachers.
      ,
      • Fournier N.M.
      • Calverley K.L.
      • Wagner J.P.
      • Poock J.L.
      • Crossley M.
      Impaired social cognition 30 years after hemispherectomy for intractable epilepsy: the importance of the right hemisphere in complex social functioning.
      ], the onus seems to be on the parent. Thus, interpersonal interactions between the teacher and child are informed by parental involvement. If miscommunications occur on the part of the teacher or the parent during their interactions about the child, the child will be affected. In fact, parents often report feeling that teachers do not always demonstrate respect for parental understanding of their child's epilepsy [
      • Wu K.N.
      • Lieber E.
      • Siddarth P.
      • Smith K.
      • Sankar R.
      • Caplan R.
      Dealing with epilepsy: parents speak up.
      ]. This may be because parents have trouble effectively communicating the child’s needs to the teacher. Certainly the research that shows teachers have a poor understanding of childhood epilepsy suggests this is tenable. Parents’ inability to communicate effectively with their child's teacher can negatively influence how the child and teacher interact and may also help to explain why teachers may rate these children lower for academic performance [
      • Katzenstein J.M.
      • Fastenau P.S.
      • Dunn D.W.
      • Austin J.K.
      Teachers’ ratings of the academic performance of children with epilepsy.
      ], exclude children from school games and play [
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ], and encourage children to go home unnecessarily after a seizure [
      • Aguiar B.V.K.
      • Guerreiro M.M.
      • McBrian D.
      • Montenegro M.A.
      Seizure impact on the school attendance in children with epilepsy.
      ].
      Parent-teacher interactions also influence parenting, for instance, by increasing parental demands that lead to increased parental fatigue. According to research by Jan [
      • Jan M.
      Intractable childhood epilepsy and maternal fatigue.
      ] 44% of mothers of children with epilepsy score high on a scale of physical and mental fatigue. Although quality of parent-teacher interactions was not included in Jan's study, it is possible that they contribute to maternal fatigue. Research by Wagner et al. [
      • Fournier N.M.
      • Calverley K.L.
      • Wagner J.P.
      • Poock J.L.
      • Crossley M.
      Impaired social cognition 30 years after hemispherectomy for intractable epilepsy: the importance of the right hemisphere in complex social functioning.
      ] suggests this may be the case. They found parents felt they had to spend excessive amounts of time advocating for their children within the school, which they found fatiguing. Research that investigates maternal fatigue and parenting in healthy and chronically ill parents suggests that maternal fatigue does indeed have a negative impact on parent-child interactions [
      • White C.P.
      • White M.B.
      • Fox M.
      Maternal fatigue and its relationship to the caregiving environment.
      ]. Mothers with high levels of fatigue have difficulty monitoring their children and experience increased levels of annoyance and frustration with every day child behaviour. Moreover, when fatigued, mothers are more likely to react to their child with irritation and anger. Thus, negative parent-teacher interactions may have an indirect negative impact on the parent’s interpersonal interactions with the child. Children’s social-emotional and behaviour development may be negatively affected if parents experience difficulty communicating effectively with the teacher so that the teacher treats the child appropriately. Additionally, the need for parents to put forth extra effort to advocate for their child may have consequences for their parenting behaviours adding to the child's negative experiences within the context of the home environment.
      Also indirectly affecting the relationship between parent and child is the interaction between the parent and physician. Although healthcare is usually considered to be in the next level of social context (i.e., exosystem), in this case physicians are closer to the child's immediate social circle because of the severity of the illness. As a result, disagreements between the parent and physician with respect to concerns around the child’s epilepsy can be stressful for parents, which will then impact the child. In fact, research indicates that parents’ perceptions of their child’s illness do not often match that of the child’s physician. Ryan et al. [
      • Ryan B.L.
      • Speechley K.N.
      • Levin S.D.
      • Stewart M.
      Parents’ and physicians’ perceptions of childhood epilepsy.
      ] asked parents and their child's pediatric neurologist about the day to day impact of the child's seizures on the child's well being and the family. These investigators found that there was discordance between perspectives not only on medical aspects of the child's epilepsy (e.g., perceived seizure length and severity) and general health, but also on the day to day aspects of living with epilepsy. Parents reported a greater number and intensity of side effects than the physician. Although in most cases the physician was aware of the parent’s main worry, parents reported two times more worries than the physician believed them to have. Parents also reported at least twice as many restrictions on their child's and family’s activities, problems coping with school, and behaviour changes associated with their child's epilepsy compared to physician reports. Not surprisingly, parent dissatisfaction with quality of care was higher when there was a greater discrepancy between parent and physician reports of the impact of seizures on parental worry and restrictions on family activity. Although there are different reasons for the discrepancy between parent and physician perspectives (e.g., parental concerns not consistent with medical facts, physicians lack of understanding of full impact of seizure activity on the family), this discrepancy explains why parents often lack trust in medical health care providers. Research shows that parents perceive their child's physician as providing inadequate healthcare [
      • Dietz L.J.
      • Birmaher B.
      • Williamson D.E.
      • Silk J.S.
      • Dahl R.E.
      • Axelson D.A.
      • et al.
      Mother-child interactions in depressed children and children at high risk and low risk for future depression.
      ] and that as many as 44% of parents are unhappy with the quality of medical care provided to them [
      • Suurmeijer T.P.
      • Reuvekamp M.F.
      • Aldenkamp B.P.
      Social functioning, psychological functioning, and quality of life in epilepsy.
      ]. Parents included in focus group research claim to have little trust in their child's neurologists and feel that they are more informed about epilepsy than the doctors [
      • Moffat C.
      • Dorris L.
      • Connor L.
      • Espie C.
      The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy.
      ].
      Although it may not be obvious how discordance between parent and physicians perceptions and lack of trust can influence child development, Suurmeijer [
      • Suurmeijer T.P.
      Quality of care and quality of life from the perspective of patients and parents.
      ] provides research findings that establish a link. According to Suurmeijer [
      • Suurmeijer T.P.
      Quality of care and quality of life from the perspective of patients and parents.
      ], healthcare providers impact how parents feel and act. He found that a majority of mothers and fathers reported that when they were given adequate information about their child's medical condition, they were not only less fearful, but also more knowledgeable about their child's condition and more accepting and better able to adjust to their child's illness. Moreover, he reports that parents imposed fewer everyday restrictions on their child's activities (e.g., reading, watching TV, swimming, cycling) when they felt that the physician provided them with adequate information about epilepsy and epilepsy care. Clearly the ability of the child's healthcare provider’s to transfer knowledge to parents is important for parenting practices and parental stress. However, there are also distal systems that inform parent and physician experiences. One such system is the exosystem.

      5. Exosystemic understanding of development in childhood epilepsy

      Recall that the exosystem is comprised of contexts that impact the child’s development, but where the child has no direct involvement such as legislation, social organizations, education, and healthcare systems. For instance, efforts and decisions made by the International League Against Epilepsy (ILAE) in defining epilepsy help inform healthcare approaches to treatment of childhood epilepsy. Although the task of defining epilepsy and seizures was assigned to the ILAE in 2005, changes and shifts in terminology used to describe epilepsy have occurred with a final definition being proposed in 2017 [
      • Scheffer I.E.
      • Berkovic S.
      • Capovilla G.
      • Connolly M.B.
      • French J.
      • Guilhoto L.
      • et al.
      ILAE classification of the epilepsies: position paper of the ILAE commission on classification and terminology.
      ]. This included a shift toward labelling epilepsy as a disease rather than a disorder to highlight its severity [
      • Fisher R.S.
      • Acevedo C.
      • Arzimanoglou A.
      • Bogacz A.
      • Cross J.H.
      • Elger C.E.
      • et al.
      A practical clinical definition of epilepsy.
      ,
      • Scheffer I.E.
      • Berkovic S.
      • Capovilla G.
      • Connolly M.B.
      • French J.
      • Guilhoto L.
      • et al.
      ILAE classification of the epilepsies: position paper of the ILAE commission on classification and terminology.
      ]. Buelow and Shore posit that the system of diagnostic criteria leads to an often lengthy path towards treatment; seizures may not clearly fit with diagnostic expectations and diagnostic testing does not prove useful [
      • Buelow J.M.
      • Shore C.P.
      Childhood epilepsy: failures along the path to diagnosis and treatment.
      ]. They suggest that physicians provide inaccurate or no diagnosis, or even inappropriate intervention and parents are forced to repeatedly seek out medical care for their children. One parent interviewed about their healthcare experiences claimed that their child experienced multiple seizures within several days, but was not diagnosed until the physician witnessed a seizure [
      • Buelow J.M.
      • Shore C.P.
      Childhood epilepsy: failures along the path to diagnosis and treatment.
      ]. Understandably, parents become frustrated and distrustful of the system and their healthcare providers, and behave accordingly.
      Other healthcare protocols may also impact interpersonal transactions between the child and the members of his immediate social circle. Treatment for epilepsy can be challenging and parents and physicians may opt to seek out nonpharmacological treatment options, such as a ketogenic diet, brain surgery, or vagus nerve stimulator implantation. However, these options involve a series of steps that need to be fully considered before implementation. For instance, the child must be unresponsive to several anti-seizure medications and a number of medical tests must be completed to determine if the child is a surgical candidate. More specifically, when considering surgery, the child will be administered magnetic resonance imaging and a number of electroencephalograms that involve hospital stays for child and parent. Parents need to take additional time off work to proceed with these types of investigations, which may cause financial and work stress and increase the risk of negative parent-child interactions. Moreover, additional medical testing leads to increased absenteeism in school and therefore, fewer interactions with teachers and peers.
      Not all exosystemic interactions are negative. In fact, there are a number of programs put in place by advocates for individuals diagnosed with epilepsy that should have the opposite effect. Agencies that advocate for individuals with epilepsy make efforts to raise awareness in the community [
      • Epilepsy Durham Region
      Thinking About Epilepsy.
      ]. School programs are offered in an effort to change negative perceptions of epilepsy, increase understanding, and ultimately change the type of interpersonal interactions that occur between the teachers and peers, and the child. However, programs like these are subject to grant funding from government agencies and as such may be short lived.
      Certainly, exosystems like healthcare and community organizations have an indirect impact on the development of a child with epilepsy. However developmental influences extend beyond these systems to the macrosystem.

      6. Macrosystemic understanding of development in childhood epilepsy

      The macrosystem is the outermost layer of social contextual systems outlined by Bronfenbrenner [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ]. The macrosystem includes cultural and subcultural values and norms (e.g., belief systems, ideologies) and although the macrosystem’s effects can seem subtle, they actually have a significant impact on a child’s social-emotional and behavioural development. In Western societies, obtaining a driver’s license is a culturally held norm and can be considered a rite of passage for most adolescents. However, adolescents diagnosed with epilepsy do not share the same experiences. In Canada, individuals with epilepsy are not permitted to acquire a license unless they have been seizure free for a minimum of six months and have regular appointments with their doctor [
      • Epilepsy Ontario
      Epilepsy and Driving in Ontario.
      ]. Obtaining a driver's license is often a turning point in an adolescent’s life, a shift towards independence and adulthood. Teenagers may bond with their parents while learning to drive and revel in their newfound freedom with their peers. In contrast, children with epilepsy move into adolescence knowing that they may never have this opportunity and proceed to miss out on these experiences with parents and peers. Being unable to drive may place restrictions on the adolescents’ social life, particularly in rural communities that lack public transportation for the adolescent to participate on sports teams, visit friends, date, and so forth. These limitations may thwart attempts to build and maintain social relationships as early as age fourteen (in Alberta). The adolescent may be viewed as being needy and feel highly dependent on others. Moreover, this can lead to feelings of isolation and discourage a sense of belonging.
      Feelings of isolation and a sense of not belonging may also be consistent with additional restrictions placed on typical adolescent activities, such as spending time with other adolescents drinking. Although illegal, drinking behaviour is common in adolescents, in fact, according to the United States 2014 National Survey on Drug Use and Alcohol, more than 20% of adolescents between the ages of 12 and 17 drank alcohol in the month prior to the poll [
      • Center for Behavioural Health Statistics
      • Quality
      Behavioural health trends in the United States: Results fromthe 2014 National Survey on Drug Use and Health.
      ]. Regardless of legality, adolescents with epilepsy need to be particularly cautious with respect to alcohol, as it may act as a trigger for seizures and reduce efficacy of meds [
      • Epilepsy Canada
      Teens and epilepsy.
      ]. While not encouraged, alcohol consumption is part of adolescent life and an adolescent will need to make decisions about drinking alcohol and engaging in drinking games at parties attended by a group of their peers. This may be particularly difficult for a young teen who must weigh the potential consequences associated with drinking (e.g., increased seizure activity) with the need to conform to the norms of their peer group. Adolescents with epilepsy report that drinking is an expected norm by age 18 [
      • Mcewan M.J.
      • Espie C.A.
      • Metcalfe J.
      • Brodie M.J.
      Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods.
      ]. This may impact how the teen feels about their social relationships. In fact, McEwan et al. report that during a focus group session, a 14 year old boy reported feeling left out because he was unable to drink, since drinking would bring on a cluster of seizures [
      • Mcewan M.J.
      • Espie C.A.
      • Metcalfe J.
      • Brodie M.J.
      Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods.
      ]. This could also increase anxiety associated with making decisions about alcohol. Only 15% of adolescents with epilepsy tell their friends that they have epilepsy [
      • Center for Behavioural Health Statistics
      • Quality
      Behavioural health trends in the United States: Results fromthe 2014 National Survey on Drug Use and Health.
      ]. Adolescents report that when their peers do know about their epilepsy they are treated differently [
      • Elliott I.M.
      • Lach L.
      • Smith M.L.
      I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life.
      ]. Moreover, the stigma that accompanies epilepsy is associated with low self-esteem [
      • Center for Behavioural Health Statistics
      • Quality
      Behavioural health trends in the United States: Results fromthe 2014 National Survey on Drug Use and Health.
      ]. Adolescents with epilepsy who want to avoid the additional consequences of drinking (e.g., increase in seizure activity) may feel forced to choose between divulging their illness or appear as though they going against the norm (declining to drink). While other teens who wish to go against the norm may be able to rely on offering to be the designated driver or elect to drive to a party in order to avoid the pressures of alcohol consumption (anecdotally, a common strategy) adolescents with epilepsy are unable to use this approach (due to licensing restrictions previously discussed).
      Another one of the many social values that can impact developmental experiences for some children with epilepsy is the societal views towards cannabis. In Western culture, although some subcultures support the use of cannabis by adults, there is a widely held belief that child use of cannabis is morally wrong. However, there is some research that suggests that cannabis may be effective for reducing seizure frequency [
      • Devinsky O.
      • Cross H.
      • Laux L.
      Trial of cannabidiol for drug-resistant seizures in the Dravet Syndrome.
      ]. Devinsky et al. found that cannabidiol (cannabis that lacks the chemical THC that provides the “high” that recreational drug users seek) is an effective treatment for one type of epilepsy; Dravet syndrome [
      • Devinsky O.
      • Cross H.
      • Laux L.
      Trial of cannabidiol for drug-resistant seizures in the Dravet Syndrome.
      ]. Social values and legislation in the United States and Canada may prevent parents from pursuing this type of treatment. Supporters of the use of cannabidiol suggest that in order for some parents to consider this type of treatment, relocation is mandatory [
      • Stanley J.
      The surprising story of medical marijuana and pediatric epilepsy.
      ]. Relocation is often a significant life-changing event that means uncertain employment opportunities for parents and removal of important emotional supports (e.g., family and friends) for families with a chronically ill child. Moreover, if parents choose to relocate they may experience restrictions in their ability to travel because of the potential of being charged with a criminal offence if they have their child’s medicinal marijuana with them (possession of an illegal substance).
      Yet another set of values that impacts the development of the child with epilepsy are the views of medical professionals. In the medical community, a fundamental belief is that medical care providers should strive to find effective treatments with the goal of improving quality of life for individuals diagnosed with chronic illness. This in turn, necessitates research to satisfy this objective. Organizations like the World Health Organization (WHO) work alongside governments and partner organizations to fulfill these objectives [
      • World Health Organization
      About who.
      ]. Epilepsy specific organizations like ILAE are formed with the mandate of reducing the impact of epilepsy on an individual’s life. Some of the main goals of the ILAE are to promote research and improve the care of patients by advancing treatment options for a seizure free life (www.ILAE.org). Outcomes of research have led to the introduction of a variety of treatments, including surgery, with a number of hospitals across North America offering surgical intervention. Surgery as an alternative for epilepsy is being considered at younger ages and requirements have become less restrictive (i.e., one year of uncontrolled seizures as opposed to two) [
      • The Epilepsy Foundation
      Surgery.
      ], which is consistent with the idea of optimizing quality of life. Physicians and parents are considering surgical treatment sooner and the child is evaluated accordingly. As previously noted this indirectly impacts the child’s microsystem (e.g., parent-child interactions) because the child may undergo surgical candidacy assessments that impact the parent’s income potential (due to missed work days). Moreover, the outcome of these evaluations may further impact a child as a result of the parent’s expectations. A parent may be joyous and hopeful, yet apprehensive when surgical candidacy is confirmed or disheartened if learning that surgery is not an option for their child, which can impact how the parent interacts with the child.
      Clearly societal norms and ideologies that reflect the macrosystem have an impact on children and adolescents with epilepsy. There is little doubt that this system and the other systems described by Bronfenbrenner (micro-, meso-, and exo-systems) provide critical information when considering the development of a child with epilepsy.
      Although the current review highlights important social contextual factors that impact the development of children with epilepsy, it should be noted that it does not provide an exhaustive list of the numerous contexts that are applicable. Some of the most common interactions within the microsystem are between the child and parents, teachers, and peers; however, there are many other relationships that should be considered, such as those with siblings, extended family, daycare providers, and even sports coaches. The interactions amongst these individuals, as well as others, create a much more diverse mesosystem than has been described in the present review. Moreover, the exosystem goes beyond healthcare policies and social organizations that advocate for individuals with epilepsy. Educational policies and local and federal structures are just a few of the many other societal organizations to consider at this level. Additionally, there are a vast number of cultural determinants as well such as ethnic differences between parents and physicians, ideologies about disabilities, religion, and mental health.

      7. Conclusion

      Much research shows a link between childhood epilepsy and psychopathology [
      • Russ S.
      • Larson K.
      • Halfon N.
      A national profile of childhood epilepsy and seizure disorder.
      ,
      • Baker G.
      • Spector S.
      • McGrath Y.
      • Soteriou H.
      Impact of epilepsy in adolescence: a UK controlled study.
      ,
      • Baum K.T.
      • Byars A.W.
      • deGrauw T.J.
      • Dunn D.W.
      • Bates J.E.
      • Howe S.R.
      • et al.
      The effect of temperament and neuropsychological functioning on behaviour problems in children with new-onset seizures.
      ,
      • Williams J.
      • Phillips T.
      • Griebel M.L.
      • Sharp G.B.
      • Lange B.
      • Edgar T.
      • et al.
      Factors associated with academic achievement in children with controlled epilepsy.
      ,
      • Thornton N.
      • Hamiwka L.
      • Sherman E.
      • Tse E.
      • Blackman M.
      • Wirrell E.
      Family function in cognitively normal children with epilepsy: impact on competence and problem behaviours.
      ,
      • Ott D.
      • Siddarth P.
      • Gurbani S.
      • Koh S.
      • Tournay A.
      • Shields W.D.
      • et al.
      Behavioural disorders in pediatric epilepsy: unmet psychiatric need.
      ] but there is a tendency to look to biological determinants as an explanation. The intent of the current paper was to demonstrate how proximal and social structures can be important contributing factors to psychopathology and the development of a child diagnosed with epilepsy. It also highlights how proximal and distal social structures differ for these children compared to their healthy peers. A child's development is influenced by interactions within the child's immediate social circle (e.g., parents, teachers, peers) and these interactions tend to be less positive for children with epilepsy compared to their peers. Research demonstrates that poor interpersonal interactions at home [
      • Thornton N.
      • Hamiwka L.
      • Sherman E.
      • Tse E.
      • Blackman M.
      • Wirrell E.
      Family function in cognitively normal children with epilepsy: impact on competence and problem behaviours.
      ,
      • Rodenburg R.
      • Meijer A.M.
      • Deković M.
      • Aldenkamp A.P.
      Family factors and psychopathology in children with epilepsy: a literature review.
      ,
      • Ryan B.L.
      • Speechley K.N.
      • Levin S.D.
      • Stewart M.
      Parents’ and physicians’ perceptions of childhood epilepsy.
      ] and school [
      • MacLeod J.S.
      • Austin J.K.
      Stigma in the lives of adolescents with epilepsy: a review of the literature.
      ,
      • Cole D.
      Relation of social and academic competence to depressive symptoms in childhood.
      ] are risk factors for psychopathology.
      This review, in the context of Bronfenbrenner’s model suggests that changes to the macrosystem could have a trickle-down effect that might reduce risk factors for psychopathology. For instance, medical professionals can be trained to listen actively and ask for parental concerns about the child’s medical condition. Thus, their interpretations may be more consistent with parental interpretations of the severity of epilepsy. A clearer understanding of parental concerns can only improve quality of care. Additionally, physicians and clinics could offer appointments and clinical assessments during evening and weekend hours so that parents have the flexibility of scheduling these outside of their regular work day. This could reduce parental concern about missed work and improve the quality of interaction between parent and child during appointments. Moreover, children with epilepsy would miss less instructional time and not be forced to use time allocated for breaks to catch up on schoolwork, thereby increasing opportunities to interact with peers.
      Similarly, changes to the exosystem (social programs to inform parents, teachers, and students about epilepsy) could influence change within the mesosystem (parent-teacher) and microsystem (teacher-child; parent-child) and help mediate some of the psychosocial consequences that accompany the diagnosis. Information about epilepsy should be presented to teachers and students by a medical practitioner (i.e., nurse). Informed students may be more empathetic and inclusive of their peers who are diagnosed with epilepsy. Additionally, this could help teachers feel more confident about managing seizures in the classroom and teaching students with epilepsy. This in turn would reduce the burden that parents feel about educating teachers about their child with epilepsy and reduce stress levels that influence the parent-child relationship.
      Lastly, research investigating psychopathology in children with epilepsy should include both medical and social factors. For instance, studies examining internalizing disorders in children with epilepsy should not only consider epilepsy variables (e.g., seizure length and frequency) but also social contexts. Parenting styles and manifestations of parental stress could potentially influence thinking patterns consistent with psychopathology (e.g., depression). Additionally, social interactions at school with teachers and classmates could impact self worth. Thus, we need to consider these micro interactions when trying to understand psychopathology associated with childhood epilepsy.
      Bronfenbrenner argues that the ideal way to understand a system is to disrupt it [
      • Bronfenbrenner U.
      Toward an experimental ecology of human development.
      ]. Onset of a seizure disorder can in some ways be considered a natural experiment for understanding development since it upsets a child's developmental trajectory. Therefore, consideration of the child who is diagnosed with epilepsy from the immediate to the outermost social environments can be informative to our understanding of that child and the consequences of experiencing particular social environments. More importantly, although not discussed here, this type of disruption (i.e., seizure onset) in the path of development can also inform understanding of development of healthy children as well as the development of individuals that are in the child's immediate social circle because the child is also an agent in their particular microsystems (e.g., the child serves as an agent in the parent’s microsystem).

      Conflicts of interest

      None.

      Funding

      This work was supported by a Social Sciences and Humanities Research Council of Canada ( SSHRC ) Joseph-Armand Bombardier Canada Graduate Scholarship-Doctoral Award ( 767-2013-1797 ) to K.Bailey.

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