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Review Article in Medically Fragile Youth: Risks, Protective Factors, and Recommendations for Medical Providers

Faith MA1,2*, Reed G1,2, Heppner CE1,2, Hamill LC1,2 and Donewar CW1,2 Abstract 1Department of Psychiatry, Children’s Medical Center, Bullying is a common child and adolescent phenomenon that has concurrent USA and long-term implications for victims’ psychological, psychosomatic, social, 2Department of Psychiatry, UT Southwestern Medical and academic functioning. Youth with chronic illnesses are at increased risk for Center, USA being bullied, but few studies have evaluated specific risk and protective factors *Corresponding author: Faith MA, Department for medically fragile youth. Despite the American Academy of ’ and the of Psychiatry and the Center for Cancer and Blood Society for Adolescent Medicine’s recommendations that pediatric healthcare Disorders, Children’s Medical Center, 1935 Medical providers should contribute to bullying prevention and intervention efforts, District Drive, Dallas, Texas 75235, USA researchers also have yet to identify the best ways for providers to intervene with medically fragile youth. In this paper, we review risk and protective factors Received: June 14, 2014; Accepted: July 09, 2014; for bullying among healthy samples. Then, we specifically address ways in Published: July 10, 2014 which these risk and protective factors are likely to apply to children with fragile medical conditions and we provide summaries of extant bullying research for selected examples of medically fragile pediatric populations. Finally, we present recommendations for intervening with medically fragile youth and suggest several areas in which additional research is needed.

Keywords: Bullying; Medically Fragile; Chronic illness; Child; Adolescent;

Peer Victimization in Medically Fragile Although much is known about peer victimization risk and Youth: Risks, Protective Factors, and protective factors for healthy youth, research in this area for youth Recommendations for Medical Providers with fragile medical conditions is limited. Rates of peer victimization are higher in many chronically ill samples of children [11]; however, Peer victimization is a common child and adolescent phenomenon not all diagnostic groups are at increased risk [19]. This variability has [1-3] that can have concurrent and long-lasting negative effects implications for understanding the translation of risk and protective on youths’ psychological, psychosomatic, social, and academic factors from general pediatric populations to medically fragile youth. functioning [4-10]. Studies suggest children and adolescents (herein Given the complexity of care required by fragile medical conditions referred to as “youth”) with chronic illnesses are at particularly [13], it is likely that factors such as duration of illness, illness impact elevated risk of being bullied [11]. Some evidence suggests links on functionality, parents’ perception of children’s strengths and between peer victimization and poor psychosocial adjustment are weaknesses, and family socialization all play roles in medically fragile even stronger for chronically-ill youth than for healthy peers [11,12]. youths’ risk of peer victimization and resulting negative sequelae. Given evidence for social vulnerability, it is important for medical The American Academy of Pediatrics and the Society for providers to recognize risk and protective factors that apply to Adolescent Medicine have recommended pediatric healthcare pediatric chronic illness populations. providers recognize, screen, and make appropriate referrals for youth Medically fragile youth comprise a small subset of youth with who are involved in bullying [20,21]; however, little is known about chronic illnesses [13]. Extant literature has not converged on a specific risk and protective factors common for medically fragile standard definition of medical fragility, but most studies conceptualize youth. Even less is known about the most effective ways for pediatric medically fragile youth as those dependent on medical technology, providers to intervene when patients are victimized by peers. In this nursing care, and/or strict adherence to medical regimens in daily life paper, we review risk and protective factors for peer victimization [13-15]. Most research on medical fragility has focused on pediatric among healthy samples and discuss application of these factors populations requiring minimal to extensive advanced technology to medically fragile youth. Then, we discuss current literature on for daily living [16-18]. In the current paper, we shift the emphasis bullying in selected medically fragile pediatric populations. Finally, from technology dependence to required adherence to strict medical we present recommendations for intervening with medically fragile regimens in daily life. Specifically, we are interested in medically youth and suggest several areas for additional research. Of note, we fragile youth who are at risk of significant medical complications narrow the scope of this manuscript to bullied youth and do not discuss risk factors for youth who bully others. (e.g., severe respiratory distress) if they do not strictly adhere to medical recommendations and safety precautions. We also specify Peer victimization correlates, risks, and Protective factors that medical recommendations must interfere with age-normative Peer victimization involves repeated exposure to peer activities to meet criteria for medical fragility. interactions that a) convey harmful intent, b) produce harmful

Austin J Psychiatry Behav Sci - Volume 1 Issue 6 - 2014 Citation: Faith MA, Reed G, Heppner CE, Hamill LC and Donewar CW. Bullying in Medically Fragile Youth: Risks, ISSN : 2381-9006 | www.austinpublishinggroup.com Protective Factors, and Recommendations for Medical Providers. Austin J Psychiatry Behav Sci. 2014;1(6): 1028. Faith et al. © All rights are reserved Faith MA Austin Publishing Group effects, and c) are implicitly and/or explicitly sanctioned by peers [22- Physical risk and protective factors 25]. Peer victimization differs from transient, time-limited bullying Physical risk is comprised of two primary categories: (1) physical experiences in that peer victimization is chronic, involves harmful characteristics that present obvious deviations from average physical intent and effect [26], and involves an implicit or explicit social power appearance, and (2) physical characteristics that limit youths’ differential between bullies and victims [27-29]. Although some participation in age-normative activities. Youth with physical studies find that as many as 60-80% of school-aged youth are bullied anomalies, especially those anomalies associated with physical at some point during their school years [1,3,30], most studies find disabilities, facial deformities, or skin problems, are especially likely closer to 10-38% of children in middle childhood self-report being to be bullied by peers [68-72]. Physical disability is a risk factor even bullied at a given time [2,31-38]. Prevalence rates for chronic peer for very young children, with a recent study finding half to one-third victimization vary by youths’ age and developmental level but tend to of preschoolers with physical disabilities are victimized by peers range from 10-20% of middle-childhood youth [34,36]. [73]. Overall physical unattractiveness also plays a role in social Peer victimization can take three primary forms: physical, risk [74-76]. Finally, a robust research literature demonstrates that verbal, and relational. For the sake of this review, we conceptualize specific physical characteristics like being overweight or obese [77- as falling into one or more of these categories. Physical 80] or being small in stature (particularly for boys; [25,27]) can place peer victimization involves physical harm (e.g., hitting, shoving) or children at risk for increased victimization experiences. threats of physical harm [40]. Verbal victimization involves overt Physical characteristics that limit youths’ participation in age- verbal attacks designed to cause harm to the victim (e.g., name- normative activities can also place youth at social risk. Several studies calling, making fun of the victim; [41]). Relational victimization document relations between peer-rated athleticism and peer-rated involves behaviors intended to reduce the victim’s social status, peer popularity [81,82], with relations being particularly strong for boys relationship quality, or self-esteem and is often initiated by friends [74,83]. Athletic ability may also moderate the relation between peer (e.g., excluding the victim from social activities, gossiping about rejection and peer victimization, such that socially rejected children the victim; [42,43]). Studies generally find boys are more likely to who are also unathletic are at particularly heightened risk [76]. experience physical [44,45] and verbal victimization [46], whereas Adding to the notion that activity-limiting physical characteristics girls are more likely to experience relational peer victimization [44]. can increase bullying risk, at least one study documented significantly Perhaps because of these differences in victimization modality, boys higher risk for chronically ill youth whose illness limits school are most likely to be victimized on playgrounds, at home, in their involvement compared to chronically ill youth who are able to attend neighborhoods, and at sporting events, whereas girls are most likely school consistently [84]. to be victimized at home [47]. Friend support appears to protect boys from relational peer victimization and subsequent internalizing Physical risk factors for medically fragile youth problems more so than girls [48], perhaps because girls’ greater Physical risk factors for medically fragile youth can be associated intimate self-disclosure to friends [49] can feed friends’ ability to with both condition-specific activity restrictions and demands relationally victimize each other [50]. of medical treatment. When medical recommendations impose Not all bullied children suffer ill-effects of victimization restrictions on physical activity or interpersonal contact, reduced experiences [39,51]; however, children who persist as victims are at opportunities to interact with peers during age-normative activities elevated risk for a number of poor psychosocial and psychosomatic (e.g., sports, school) may place youth at risk [85]. Opportunities to outcomes [8,52,53]. These risks include concurrent difficulties with initiate play or other social interactions with peers may be especially , social , self-esteem, academic performance, social limited for children who require assistance for ambulation [86]. skills, internalizing and externalizing symptoms, self-harm, and Despite theoretical links between medically fragile youths’ restricted psychiatric disorders [4,6,10,23,24,54-56]. Chronically victimized opportunities and increased risk of peer victimization, extant youth are also at increased risk of physical and psychosomatic research evaluating these links is limited and inconsistent. A cross- complaints compared to non-bullied children [57,58]. Several studies national study in Europe found children with disability or chronic document greater risk of maladaptive psychological adjustment and illness are at higher risk for bullying when the illness restricts school academic functioning following peer victimization for girls compared participation [84], whereas other studies find no link between to boys [46,59]. However, some studies find relational victimization chronically ill children’s physical restrictions and social functioning is a stronger predictor of internalizing symptoms for boys than girls, [87]. Further research is needed to determine what medically- perhaps because relational victimization is rarer among boys [60,61]. recommended restrictions, if any, place medically fragile youth at risk Extending into adulthood, researchers have found links between for peer victimization. chronic childhood peer victimization and adulthood , Aspects of medically-fragile youths’ medical regimen can also , self-criticism, of negative evaluation, loneliness, body place these youth at risk for peer victimization. For instance, Van dissatisfaction, eating disturbances, and suicidal behavior [5,7,9,62- Cleave and Davis [88] found children with specific health care needs, 67]. including using prescription medication, requiring more health Although peer victimization is common among school-aged care services than an average child, and participating in physical, youth, some factors appear to serve as risk or protective factors for occupational, or speech therapy were at significantly higher risk of school-aged youth. Peer victimization risk and protective factors being bullied. Children with conditions resulting in gross motor generally fall into one of four classifications: physical, cognitive/ delays who may be categorized as “clumsy” also appear to be at higher academic, social/emotional, and family-related factors. risk [89].

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Cognitive and academic risk and protective factors youth. Impaired cognitive functioning is a risk factor for peer Social and emotional risk and protective factors victimization [90]. Poor academic performance also places youth at We conceptualize social and emotional risk and protective factors risk [81,91,92]. Relations between academic difficulties and bullying as falling into three categories: (1) factors associated with social skills experiences are especially robust for youth who perceive low parental and support, (2) factors associated with and psychological support [93] or who have low perceived school connectedness symptoms, and (3) factors associated with sexuality or gender [90,93-96], perhaps suggesting an increased need for screening and nonconformity. Because we are most interested in factors most prevention among these medically fragile youth. In contrast, bullying influenced by medical fragility, we limit discussion to categories (1) victims tend to fare best if they have a strong emotional connection and (2). to at least one non-parental adult or if they describe liking and feeling safe at school [97]. Youth who have poor social skills are at markedly elevated risk for peer victimization [110]. Youth with social communication Other aspects of school environment and student-teacher difficulties (e.g., stuttering), in particular, tend to be bullied more relationships further contribute to peer victimization risk. Schools than normally-communicative peers [72,111-114]. Perceived social in which overall student-teacher relationship quality is positive and support can also be an important predictor of continued victimization in which students perceive being well-supported by teachers have and psychosocial outcomes following bullying experiences [115]. For lower incidence of peer victimization [98-102]. Further, although example, having at least one close, supportive friendship decreases risk special education itself increases bullying risk [96], risk is particularly of future bullying [116,117] and partially mitigates bullied youths’ risk elevated when teachers in special education inclusion classrooms do of negative psychosocial outcomes [118]. Research has demonstrated not recognize youths’ elevated risk [68,102]. Moreover, girls who are friendship quality is inversely related to loneliness for chronically rejected by peers are at particularly high risk for peer victimization in classrooms in which bullying behavior is common [103]. bullied children [119]. Perhaps speaking to the importance of social support or perceived mastery, youths’ involvement in extracurricular Cognitive and academic risk factors for medically fragile team activities may also decrease future peer victimization [120-121] youth and internalizing and externalizing problems that result from peer Medically fragile youth whose illness affects CNS functioning victimization experiences [121]. may be at notably higher risk for peer victimization. Scholars have Youths’ coping and premorbid psychological functioning also suggested the association between childhood chronic illness and appear to play a role in peer victimization risk. For example, high self- impaired social functioning may be mediated by problems with esteem and perceived social support serve as protective factors against attention and executive functioning [104]. For some medically fragile depression for bullied youth [125,126]. In contrast, low self-esteem, groups, medical treatment itself may result in temporary or permanent negative affectivity, social withdrawal, poor coping, and anxiety can cognitive deficits that could increase youths’ risk. For example, Naude increase youths’ risk of peer victimization [122-124]. Findings are and Pretorius [105] found that children with asthma treated with mixed with regard to a potential moderating role of gender in the corticosteroids demonstrated executive functioning deficits including extent to which psychological functioning places youth at risk. One concentration difficulties and inattentiveness, impaired short-term recent study found depression was a precedent and antecedent of memory, poor time management, and mood changes. Given the peer victimization for boys but only an antecedent for girls [127]. In identified relationship between executive functioning difficulties contrast, another study found gender did not significantly moderate and negative social outcomes, medical providers should consider relations between depressive symptoms and peer victimization [128]. medically fragile youths’ executive functioning when assessing risk of peer victimization. Youths’ strategies for coping with negative elicited by peer victimization are also associated both with likelihood of continued Children with special health care needs also tend to have more victimization [117,129] and with the impact of victimization on school absences and poorer academic functioning than healthy adjustment [130-133]. Attempts to examine the association between peers, theorized as a result of missed days and functional limitations peer victimization and children’s coping strategies have focused [106]. Extant literature has identified that children with a variety of primarily on five types of coping: internalizing, externalizing, chronic illnesses (e.g., asthma, epilepsy, heart conditions) are more avoidant, problem solving, and support seeking [129,134]. In general, likely to have difficulty with academic skills requiring cumulative and internalizing, externalizing, and avoidant coping are related to sequential learning (e.g., mathematics; [107]), likely increasing risk of increased concurrent [134-136] and long-term [129,137,138] peer peer victimization. victimization, although some of these studies find links are moderated For children with chronic illnesses, school connectedness has by child gender [131,138]. Internalizing and externalizing coping have been identified as an important protective factor for positive long- also been linked to poorer psychosocial outcomes over time [138]. In term academic outcomes [108]. Because medically fragile youth contrast, problem-solving appears to predict decreased concurrent are at heightened risk for frequent school absences and academic victimization [134,135] and improved psychosocial outcomes [131]. problems [106], school connectedness may be especially important Findings are inconsistent regarding the moderating role of gender for these youth. Fortunately, teachers may perceive ill students as less in links between social support seeking and peer victimization risk disruptive and aggressive than healthy peers [109], which could have [129,139,140]; however, social support seeking does appear to reduce implications for more positive student-teacher relationships, school risk of poor psychosocial outcomes following bullying experiences connectedness, and improved social adjustment in medically fragile [130,131]. One explanation for inconsistent findings regarding the

Submit your Manuscript | www.austinpublishinggroup.com Austin J Psychiatry Behav Sci 1(6): id1028 (2014) - Page - 03 Faith MA Austin Publishing Group moderating role of gender could be a further moderating role of victimization [153,154]. Neglectful or abusive parenting is associated negative emotionality (NE). In a recent study, seeking social support with youths’ increased risk of suicidal ideation and intent following protected bullied youth from developing depressive symptoms, but peer victimization [155]. Furthermore, boys appear to be at highest only for youth low in NE [141]. Relations between peer victimization risk when they have overprotective, controlling, over-involved and depressive symptoms were moderated by gender for youth high mothers and emotionally closed, critical, controlling fathers, whereas in NE. For girls with high NE, problem-solving appeared to be a girls appear to be at highest risk when they have hostile, rejecting, protective factor against later depressive symptoms; humor protected controlling mothers and uncaring or controlling fathers [153,154]. high NE boys [141]. Interestingly, humor predicted increased Family relationship quality and attachment are other important depressive symptoms for low NE bullied boys [141]. predictors. In general, securely attached youth who have positive Social and emotional risk and protective factors for relationships with caregivers are less likely to be victimized by peers medically fragile youth [124]. Consistent with this finding, children who perceive strong Medically fragile youth are at heightened risk of a number of emotional support from parents are less likely to bully other children social and emotional risk factors for peer victimization. For example, or to be bullied by peers [156-158] with perceived family support medically fragile youth with concurrent developmental delays tend being especially critical in decreasing risk for adolescents with limited to initiate fewer social interactions with other children compared to peer support or who live in single-parent households [156]. Perceived healthy peers [86]. Caregiver reports of social skills for children with parental support is an especially important protective factor for youth immunodeficiency disorders have also been found to be lower than who have multiple other risks of peer victimization [101]. Consistent those for healthy peers [142]. Social risk factors associated with chronic with findings related to the importance of parental support, children illness may vary as a function of gender and developmental stage. For whose parents talk to them and meet their friends are likewise less example, Helgeson and colleagues [143] examined friendships and likely to be victimized by peers [159]. Children with strong parental social functioning in youth with and found boys requiring emotional support are less likely to experience suicidal ideation or ongoing management may have particularly difficult time connecting behavior following peer victimization [97,155]. Parental support with peers. In contrast, chronically-ill adolescent girls’ friendship may also be particularly important for reducing risk of internalizing quality was moderated by age; young adolescent girls’ friendship problems following peer victimization for young adolescent girls quality was similar to that of healthy peers, whereas older adolescent and for reducing rates of physical victimization and subsequent girls’ peer support was lower than that of healthy peers. Perhaps not internalizing symptoms for boys [48]. surprisingly, chronically ill adolescents tend to experience more social Studies on the link between sibling interactions and peer exclusion than healthy peers [11]. Consistent with findings that healthy victimization are limited. Two studies have found positive girl are at higher risk than boys for internalizing problems following associations between sibling victimization and peer victimization peer victimization [46], obese girls also appear to be at higher risk [156, 160]. Another study found an association between extreme for depression following peer victimization compared to obese boys dominance over and subordination to siblings and self-reported peer [144]. Few studies have described trends in coping abilities or style victimization at school [161]. Moreover, sibling support has been for chronically ill children compared to healthy peers; however, many shown to reduce risk of peer victimization for children with AIDS in studies have examined disease and psychosocial outcomes related Africa, whereas peer support emerged as a protective factor only for to chronically ill youths’ coping. Most of these studies find poorer children who reported less diagnosis-related stigma [162]. Additional outcomes associated with passive/avoidant coping [145]. Given links research is needed to determine characteristics of sibling interactions between negative effect, withdrawal, and victimization [122] and that may predict peer victimization at school. the increased risk of depressive symptomatology and maladaptive Family and demographic risk factors for medically fragile social behavior associated with chronic illness in early childhood children [146], medically fragile youth may be more likely to experience peer victimization than healthy peers. Medically fragile youth likely experience a different socialization process than same-aged peers. According to Snyder and Patterson’s Despite medically fragile youths’ many apparent social and social learning theory [163] children are likely to learn social emotional risk factors, illnesses affecting functioning may actually be interactions through bidirectional social experiences they encounter protective in some ways. Specifically, it has been found that youth at home. Because medically fragile youth may require parental with illnesses limiting functionality tend to be perceived by peers support to accomplish tasks of daily living [164] and may be treated as less disruptive and aggressive [147,148] and May therefore be at more delicately by all family members [165], it is possible these decreased risk of victimization. youth may not learn skills that generalize well to interactions with Family and demographic risk and protective factors same-age healthy peers. We suggest that disrupted sibling roles, in particular, may limit medically fragile youths’ opportunities to learn Several demographic characteristics, parenting practices, and adaptive coping and conflict resolution skills. Given altered family family relationship parameters can place youth at risk for peer roles and interactions, we suggest medically fragile youth may be at victimization. For example, children from families with low socio- a disadvantage in navigating complex social interactions that occur economic status are more likely to be bullies and victims [149-152]. between same-aged peers and may therefore be at risk for increased Youth subjected to parenting practices characterized by , peer victimization. physical , , low-warmth, or inconsistent discipline are also at higher risk for perpetrating and falling victim to peer Research investigating parenting behaviors in pediatric chronic

Submit your Manuscript | www.austinpublishinggroup.com Austin J Psychiatry Behav Sci 1(6): id1028 (2014) - Page - 04 Faith MA Austin Publishing Group illness populations may also provide insight into family risk factors Lieberman and colleagues [173] found 35% of respondents indicated in the medically fragile pediatric population. Because it is difficult their child had been bullied, teased or harassed because of his or her to distinguish between parental overprotection and appropriate food allergy. Almost 80% of those who reported bullying endorsed parental monitoring of adherence-related behaviors for medically believing bullying was due to food allergy alone. Remaining fragile youth, the construct of parental overprotection in these youth respondents reported bullying resulted from being segregated from is difficult to measure [166]. Still, some literature suggests parents other children (i.e. special lunch tables during mealtimes), from of chronically ill children report more overprotection than parents carrying or wearing medications, or from receiving what bullies of healthy children [167]. Studies have also found links between perceived as special treatment. In a similar study, Shemesh and childhood chronic illness, disrupted attachment, and youths’ colleagues [174] surveyed 251 parents and children and found 31% poor psychosocial outcomes [168,169]. Given increased parental of children and 25% of parents reported bullying related to children’s overprotection in the medically fragile pediatric population and food allergies. In both the Lieberman and Shemesh studies, children links between parental overprotection and disrupted attachment described verbal victimization as the most common form of bullying and psychosocial outcomes [170], we suggest medically fragile youth but reported significant physical bullying as well. In both studies, may be at increased risk for peer victimization. We also recognize children reported classmates were the most common perpetrators of that increased parent involvement and supervision may decrease the bullying (80%) but that teachers and school staff were also directly chances of medically fragile children being victimized [171]. Parent/ involved in bullying (21%, [173]; 11%, [174]). These findings support child connectedness and family support have been documented as recommendations to help bullied children feel comfortable sharing key protective factors in non-chronically ill children [97,155-158]. In victimization experiences with trusted adults and asking for help at medically fragile youth, these family supports may decrease risk for home and at school. bullying and related consequences. Although verbal or appears to be the most Evidence of peer victimization in medically fragile common form of victimization for youth with food allergies, many of populations: Selected examples these youth also report physical bullying. In the Lieberman [173] and Given our theorized application of bullying risk and protective Shemesh [174] studies, 43% and 30% of respondents (respectively) factors to medically fragile youth, it is perhaps not surprising that described the allergen being waved in front of them, 25% and 22% research is mixed with regard to the rates at which medically fragile reported they were either forced to touch the allergen or the allergen youth are bullied. While medical fragility can encompass a broad was thrown at them, and several reported their food had been range of pediatric medical conditions, we narrow the scope of this purposefully contaminated with an allergen. In another study, half paper to 4 examples of fragile medical conditions: extreme food of responding children reported allergens had been waved in their allergy, asthma, congenital bleeding disorders, and osteogenesis face or that they were chased with an allergen [177]. Some severely imperfecta. Food allergy, asthma, and congenital bleeding disorders allergic children have also described being sprayed or smeared with were selected because these disorders meet criteria for medical fragility an allergen, causing allergic reactions [178]. In addition to physical and published studies have evaluated social adjustment among youth risks associated with some forms of bullying among severely allergic with these disorders. Bleeding disorders were also selected specifically youth, the psychological consequences of such bullying include a because of the added risks the disorder could add to affected boys. myriad of reported symptoms. These symptoms include or Osteogenesis imperfecta was selected as an example of a fragile depressed mood, or [173], decreased medical condition for which youths’ social adjustment appears general and social quality of life, and anxiety [174]. surprisingly positive. Below we present a summary of extant literature Asthma on bullying in these unique medically fragile populations. Asthma is the most common childhood chronic illness [179]. Food allergy Consistent with our definition of medical fragility, approximately Recent studies estimate severe food allergy affects 4-8% of youth 25% of youth with asthma are unable to participate in age-normative [172-174]. Consistent with our definition of medical fragility, youth physical activities and must rely on daily medications and rescue with food allergies are usually in good health but must adhere to inhalers to prevent severe breathing difficulties [180]. In a recent strict avoidance of allergens and immediate availability of injectable study, Wildhaber, Carroll and Brand [181] interviewed 943 youth epinephrine. Food allergen avoidance can limit participation in social with asthma across six countries. Forty-seven percent of respondents and academic activities and dietary restrictions may cause youth reported the worst things about asthma were limitations in ability to feel different from peers [175]. Additionally, because allergen to participate in sports or other social activities. Perhaps not avoidance may cause youth to be physically separated from peers and surprisingly, several studies document increased social isolation in can make youth susceptible to increased anxiety and social stress, youth with asthma [182,183]. Further, youth with asthma often youth with severe food allergy may be more vulnerable to bullying about peers’ perceptions of asthma [184] and whether to tell peers and its psychological effects [175]. Up to one-third of youth with food about the condition [185]. allergies reported significant allergy-related disruptions to school Few studies have directly examined peer victimization among attendance, which may further place these youth at risk [164]. youth with asthma. In a recent study, 10% of responding youth Most studies estimate that approximately 30% of youth with reported they had been teased or bullied about asthma, and 2% severe food allergies report being bullied by peers [174,176,177]. felt that being bullied was the worst thing about having asthma. In For example, in a survey of 324 parents of youth with food allergies, another study, Stewart and colleagues [186] surveyed 57 teenagers

Submit your Manuscript | www.austinpublishinggroup.com Austin J Psychiatry Behav Sci 1(6): id1028 (2014) - Page - 05 Faith MA Austin Publishing Group with asthma and interviewed 13 of those teenagers to identify support severity, youth with OI may lead fairly normal lives with relatively needs, resources, and barriers in this population. Teens in this study few physical restrictions or may be restricted from any movement identified need for a support program focused on helping them handle or interpersonal interaction. OI-related restrictions often preclude peer pressure, bullying, , and exclusion from parties or youth with OI from engaging in age-normative activities and require school events. Finally, Trollvik and colleagues [185] interviewed 15 strict environmental vigilance. Youth with OI commonly experience school-aged children and found several were eager to participate in greater than 100 fractures before the age of 20 years, and as a result, social and physical activities but did not want anyone at school to can have severe deformities and require frequent hospitalizations know about their asthma for fear of being teased or embarrassed. [193]. Given restrictions from age-normative activities, risk of Although these interview-based studies provide insight into youth physical deformity, and school absences associated with medical perspectives, further research is needed to investigate prevalence and appointments and hospitalizations, youth with OI could be at risk for risk of peer victimization in the pediatric asthma population. peer victimization; yet, even though studies have yet to specifically evaluate peer victimization in the OI population, extent studies Inherited bleeding disorders show that youth with OI may actually have surprisingly positive peer Hemophilia A is the most common inherited bleeding disorder, adjustment. A recent study found that children with OI described followed by hemophilia B and von Willebrand’s disease. Bleeding wanting increased social freedom and at times feeling isolated by disorders are characterized by failure or reduced ability to produce their disease or feeling different from other children [192]. However, clotting factor, resulting in risk of excessive internal and external perhaps surprisingly, several other studies have failed to find peer bleeding [187]. Hemophilia A and B often present with more severe adjustment decrements among youth with OI. For example, one symptoms than von Willebrand’s disease. Although females can be study found that youth with OI tend to report having healthy social symptomatic hemophilia carriers, hemophilia is almost exclusively interactions with necessary modifications (e.g., peers agreeing to limited to boys. Von Willebrand’s disease, in contrast, affects boys play baseball on their knees to accommodate a child with OI; [194]). and girls at nearly identical incidence [187]. Likewise, another study found that youth with OI do not differ from healthy youth in social activity participation [195]. Youth with bleeding disorders used to be discouraged from physical activities due to the risk of uncontrolled bleeding. With Two studies have evaluated relations between OI and perceptions availability of clotting factor concentrates and the introduction of of life normalcy. In one study, Dogba and colleagues [196] interviewed prophylactic factor replacement therapy, however, these children are 12 youth with severe OI and their parents and found that most patients now encouraged to engage in social and physical activities with some could only vaguely recall when they realized they were different from added protection. Increased physical activity involvement is theorized other children. Further, reportedly because they had no reference for to enhance self-esteem, increase social contact, and normalize what life without OI would be like, youth with severe OI were far less strength and fitness in youth with bleeding disorders [188,189]. likely than their parents to mourn the loss of a “normal” life. Ablon [197] also conducted an interview based study with 55 adults with As with pediatric asthma, few studies have investigated peer OI. In that study, Ablon noted the majority of interviewees described victimization in the bleeding disorder population. In a focus group having active social lives, belonging to social groups, and being and survey study of females ages 9-34 years who had von Willebrand’s involved in clubs or volunteer organizations during their school disease or were symptomatic hemophilia carriers [187], 80% reported years. One explanation for relatively successful social adjustment they had been prevented from engaging in sports activities as result of among youth with OI could be these youths’ age appropriate social their bleeding disorder, and 11% reported being teased or picked on skills and average to above average cognitive abilities [195]. Adaptive because of their bleeding disorder [187]. Older youth with hemophilia social skills and above average cognitive abilities may increase also report impairments in making/having friends and perceived youths’ ability to initiate and maintain friendships and to succeed support [190] and have lower perceived competence in establishing academically, thus protecting them from peer victimization. Another close friendships [191]. Although medical advances have increased possibility is that, because OI is frequently associated with severe opportunities for youth with bleeding disorders to lead more normal physical symptoms from a very young age, youth with OI may develop physical lives [189,191] youth with bleeding disorders continue to face necessary resilience that allows them to be socially successful [197]. social challenges and warrant additional investigation with regard to social adjustment and bullying. Boys with bleeding disorders may be Peer victimization interventions: applicability to medically at especially high risk, as boys are more likely to experience physical fragile youth peer victimization [44,45] that could lead to internal or external The American Academy of Pediatrics and Society for Adolescent bleeding. Medicine have recommended pediatric healthcare providers Osteogenesis imperfecta contribute to bullying prevention efforts [20,21]. Given elevated risks likely associated with fragile medical conditions, peer victimization Although many risk factors may place youth with fragile medical prevention and intervention may be uniquely important in conditions at risk for bullying, some fragile medical conditions appear medically fragile youths’ care. We recommend all medically fragile to perhaps protect youth from peer victimization. Osteogenesis youth be screened for peer victimization during routine medical imperfecta (OI) is a hereditary connective tissue disorder with an appointments, with special consideration for physical (e.g., short incidence of approximately 1 in 20,000 births. Eleven categories stature), cognitive/academic (e.g., school disruption), social/ of OI exist, with symptoms ranging from minimal bone deformity emotional (e.g., impulsivity), and family/demographic (e.g., child to multiple, lethal in-utero fractures [192]. Depending on disease gender) risk factors that may be associated with the youth’s medical

Submit your Manuscript | www.austinpublishinggroup.com Austin J Psychiatry Behav Sci 1(6): id1028 (2014) - Page - 06 Faith MA Austin Publishing Group condition. Unfortunately, few peer victimization interventions to implement for medically fragile youth. have been systematically evaluated [27,198,199] and fewer still have An alternative to Olweus’s comprehensive school-wide program been evaluated for youth with medical conditions. In this section, entails working with individual teachers to promote classroom peer we review evidence-based peer victimization interventions and victimization reduction. Teachers who utilize structured classroom provide recommendations for providers in a medical setting. These instruction and set clear disciplinary rules about bullying have recommendations are summarized in Table 1. classrooms in which chronic bullying is less likely to occur [27]. To Most research on bullying intervention has focused on universal, contribute to classroom structure and bullying-related rules, teachers school-wide efforts modeled after Olweus’s [25,200] school-wide may choose to employ components of Olweus’s comprehensive bullying reduction program, with several studies failing to replicate program, including but not limited to designing cooperative class Olweus’s 50% reduction in bullying [201,202]. Not only does Olweus’s activities, closely monitoring unstructured school activities, and program require extensive financial, time, and personnel resources, praising prosocial student interactions [25]. Recent research also but it is also unknown whether the program benefits chronically supports recommendations for teachers to encourage coalitions bullied youth [203-205]. These limitations, combined with the between victims and bullies [206], foster interest-based group niches likelihood that medically fragile youth treated at any one medical [207], and encourage students with highest social status to intervene center attend numerous schools across multiple districts, may make when bullying occurs [208,209]. Medical providers or mental health Olweus’s universal bullying reduction program particularly difficult professionals who work with medically fragile youth may be able to

Table 1: Recommendations for providers in medical settings. Intervention Strategy Target Strengths Limitations Universal Requires extensive resources; Partner with youths’ schools to encourage adoption of All students who attend the May reduce overall incidence of Medically fragile youth may attend Olweus’s school-wide anti-bullying program in a school schools over a large catchment area relative to medical setting Quick screenings are not labor- Requires providers to be familiar Screen all medically fragile youth for peer victimization intensive and could foster All medically fragile youth with screening measures and during routine medical appointments discussion of peer victimization recommendations for bullied youth experiences Selective Improve parenting behaviors by decreasing May reduce medically fragile Medically fragile youth at risk Parenting interventions may require a overprotectiveness, inconsistency, hostility, and/or youths’ risk of peer victimization for peer victimization mental health professional controlling parenting behaviors without involving school teachers Medically fragile youth may not have May improve youths’ coping and Medically fragile youth at risk a sibling; Some skills learned via Encourage parents to emotionally coach youth through conflict resolution skills with age for peer victimization and sibling interactions may not generalize sibling conflict mates; Many children spend more who also have a sibling to the peers due to contextual time with siblings than with peers differences Limited school attendance and/ May reduce risk of peer Enhance youths’ protective factors (e.g., friendship or physical abilities may reduce Medically fragile youth at risk victimization and improve quality, having a best friend, participating in activities at opportunities to engage in for peer victimization psychosocial outcomes of peer which the youth excels) extracurricular activities and/or to victimization if victimization occurs strengthen friendships Indicated Partner with at-risk youths’ teachers to promote clear Teachers usually have access classroom rules against bullying, increased positive to at-risk medically fragile youth reinforcement for prosocial behavior, close monitoring Medically fragile youth who and classmates, putting teachers Teachers may feel too overwhelmed of unstructured activities, coalitions between victims and are victimized at school in prime position to implement to implement recommendations bullies/students with high social status, interest-based interventions targeting bullies and niches, and intervention when bullying occurs victims Medically fragile youth who May not reduce victimization for Social skills training can be brief are victimized at school and chronically bullied youth due to Provide social skills training to bullied youth and does not necessarily require likely have social functioning social contexts that maintain social school teacher involvement deficits hierarchies Medically fragile youth who May reduce future peer May not reduce victimization for are victimized at school and Teach bullied youth to utilize more adaptive coping victimization and negative chronically bullied youth due to often utilize maladaptive strategies (e.g., “FearNot!” program) psychosocial outcomes social contexts that maintain social (e.g., internalizing or associated with peer victimization hierarchies externalizing) coping Requires infrastructure to train, Appears to reduce peer Medically fragile youth who monitor, and recruit mentors; victimization and improve social “Lunch Buddy” Mentoring are chronically victimized at Medically fragile youth may attend status for chronically bullied school schools over a large catchment area healthy youth relative to medical setting

Note: Universal = broad approach targeting all youth regardless of individual risk; Selective = preventative intervention targeting a subgroup of medically fragile youth who are at risk of peer victimization; Indicated = intervention targeting youth who are currently experiencing signs of peer victimization (SAMHSA, 2014).

Submit your Manuscript | www.austinpublishinggroup.com Austin J Psychiatry Behav Sci 1(6): id1028 (2014) - Page - 07 Faith MA Austin Publishing Group promote classroom bullying reduction by communicating elevated could generalize to the peer context. Given that medically fragile risks and potential classroom interventions to medically fragile youth likely spend more time at home with siblings than at school youths’ teachers. Healthcare providers may also communicate with peers, sibling-based interventions for medically fragile youth this information by providing in-service presentations to school could be especially appealing. personnel or by educating parents about school-based interventions Despite common adult recommendations to children to increase and encouraging parents to advocate for children’s school needs. assertiveness, use clever verbal strategies, tell an adult, walk away Despite potential benefits of teacher-delivered interventions, from bullying, or tell bullies to stop, there is evidence that adult- many teachers describe feeling too overwhelmed by demands of recommended strategies might be ineffective when used by chronically academic achievement to fully participate in anti-bullying efforts bullied children [225]. For example, two studies have found that [210]. In fact, a recent study found teachers report intervening in only victims’ use of verbal protest is reinforcing to bullies [226,227]. one quarter of known bullying interactions [211]. Given teachers’ Another study found that boys’ use of adult-recommended strategies high academic demands and limited time resources, some researchers was related to increase bullying the next school year [225]. Moreover, have turned to parent- and child-centered intervention efforts. in a recent unpublished study, Faith and colleagues [228] found that Several studies have documented direct links between children’s parents’ endorsement of telling children to confront their bully was perceived parental support and peer victimization [93]. Hostile, related to increased victimization, especially if parents were relatively inconsistent parenting [101,153] and controlling, overprotective confident about their recommendation. Given these findings, telling parenting can also place youth at risk [153,154]. Given relations parents to coach children in commonly recommended strategies may between parenting and children’s bullying risk, one interesting not be an effective intervention for medically fragile youth who are question is whether interventions designed to improve parenting chronically bullied. behaviors could improve youths’ social adjustment and reduce risk Other child-centered interventions, such as social skills training, of peer victimization. In light of evidence that mothers often become could rely less heavily on parent execution. Poor social skills put increasingly overprotective throughout the course of children’s children at risk for peer victimization [110] and can moderate chronic illnesses [167], another interesting question is whether relations between behavioral vulnerabilities (e.g., internalizing and interventions designed to decrease parental overprotection and externalizing problems, physical weakness) and peer victimization increase child autonomy could reduce risk of peer victimization. [229]. Social skills training has yet to be systematically evaluated as a Although research is needed to determine efficacy of parent-led peer victimization intervention for medically fragile youth, but studies interventions, parent interventions could be useful for medically evaluating these interventions with highly victimized children [230], fragile youth given the great deal of time these youth often spend with youth with brain tumors [231], and youth with learning disabilities their caregivers. [230,232-234] has been promising. Although more research is needed Another context in which parental intervention could limit to determine efficacy of social skills training in reducing medically children’s peer victimization risk is sibling conflict. Sibling conflict fragile youths’ peer victimization, social skills training could has been conceptualized as an arena in which children can learn provide a feasible child-centered intervention because mental health -related and social skills [212-215]. This theoretical link, providers embedded in the medical team could potentially deliver combined with evidence linking the quality of sibling interactions these interventions or refer medically fragile patients to specialized with peer victimization [126,160,215], suggests sibling interactions providers in patients’ communities. could provide a context in which youth could learn appropriate Given links between bullying victims’ coping strategies and conflict resolution and other important emotional and social skills their likelihood of continued victimization, another promising that could protect them from chronic peer victimization. Sibling intervention is to help youth develop and utilize adaptive coping skills conflict is a frequent phenomenon in most families [217] and is in response to school bullying. A recently developed intervention often characterized by intense negative emotion [218,219]. Because might have particular promise for medically fragile youth because chronically bullied youth generally utilize less effective coping skills the intervention is delivered via computerized virtual learning [235]. than non-victimized youth [38], a worthwhile inquiry is whether Sapouna and colleagues’ virtual learning program, entitled “Fear parents could promote youths’ understanding and implementation Not!” presents youth with a virtual school populated by animated of adaptive coping by promoting these skills during sibling conflict. students who characterize bullies, victims, and bystanders. Bullying Further, given evidence that interactions during sibling conflict incidents are synthesized and youth are coached in adaptive coping predict children’s later conflict resolution skills [220,221], sibling responses. In a study with bullied children, those who underwent the conflict may also present an arena in which parents can train children Fear Not! Intervention was better than peers at reducing victimization to respond adaptively to age-mate conflict. Experimental work at school, with greatest effects shown for children who received a involving parent training to mediate sibling conflict provides support larger dose of the 3-week intervention [235]. for the notion that constructive parental interventions have positive effects of siblings’ conflict resolution [222,223]. Although scholars Although child-centered bullying intervention efforts could have suggested that strengthening families and increasing sibling provide promising avenues for further investigation, the success reciprocated emotional support could reduce bullying at school of these programs may be limited by social contexts that maintain [224], additional research is needed to determine whether sibling power disparities between bullies and victims. Power differentials conflict could also be used as a context in which to teach children between the bully and victim often extend to include bystanders and adaptive coping and conflict resolution skills and whether those skills supporters [25,225,236,237]. In fact, one study found that peers were

Submit your Manuscript | www.austinpublishinggroup.com Austin J Psychiatry Behav Sci 1(6): id1028 (2014) - Page - 08 Faith MA Austin Publishing Group involved in 85% of bullying incidents by either giving attention to victimization prevention or intervention programs challenging. the bullying or by joining in the bullying activity [236,238]. Further, Although medical centers with embedded mental health providers scholars have suggested victims are unlikely to escape from the victim may be in a better position to provide assistance to families struggling role once a clear hierarchical social dominance structure has been with a child’s bullying experiences, even mental health providers who established in the classroom [239]. In a peer climate that supports peer specialize in youth psychology can have difficulty navigating extant victimization; child-centered interventions may not provide the best research in search of effective intervention recommendations. intervention for chronically victimized youth [240,241]. We suggest Medical providers and mental health providers embedded social ecology could place an even greater limitation on intervention in medical clinics may not have resources available to initiate effectiveness for medically fragile youth because these youth are and maintain comprehensive school-based intervention services. often removed from their peer group during important times for However, these providers may be able to assist through creative social interaction (e.g., recess, lunch). Given this social context, it is methods of information dissemination to school, parents, and important that peer victimization interventions recognize and target youth (e.g., school in-services, parent and youth psychoeducational a peer culture that maintains bullying [199,240]. One intervention groups). Research on selective child-centered interventions also designed to target this peer culture is lunchtime mentoring (“Lunch Buddy mentoring”). Lunch Buddy mentors interact with chronically provides promising avenues for further investigation and possible bullied mentees by visiting the mentee two times per week in the implementation with chronically bullied medically fragile youth. mentee’s school cafeteria during 30-minute lunch periods. Lunch Negative concurrent and long-term consequences of chronic bullying Buddy mentoring has been shown to significantly reduce chronic are frequently disruptive to overall quality of life and psychosocial victims’ bullying experiences over an academic year [225,242]. and academic functioning, adding further urgency to the need for Consistent with preliminary empirical support [242], scholars continued research into selective interventions for medically fragile have suggested that Lunch Buddy mentoring improves victimized youth. children’s social status and peer ecology at school [243-245]. Given References these mechanisms of change, it is unlikely Lunch Buddy mentoring 1. Benbenishty R, Astor RA. School in context. New York: Oxford would be an effective peer victimization intervention outside of the University Press. 2005. school setting. Because medically fragile youth can attend a variety 2. Rigby K, Smith PK. Is school bullying really on the rise? 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Austin J Psychiatry Behav Sci - Volume 1 Issue 6 - 2014 Citation: Faith MA, Reed G, Heppner CE, Hamill LC and Donewar CW. Bullying in Medically Fragile Youth: Risks, ISSN : 2381-9006 | www.austinpublishinggroup.com Protective Factors, and Recommendations for Medical Providers. Austin J Psychiatry Behav Sci. 2014;1(6): 1028. Faith et al. © All rights are reserved

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