Social Competence of Children with Central Nervous System Tumors Kristina K. Hardy, PhD Children’s National Medical Center Washington, DC With special thanks to Victoria Willard, PhD St. Jude Children’s Research Hospital Session Objectives Identify the risk factors that impact the social competence of a child with a central nervous system (CNS) tumor Examine the consequences of these risk factors and the long-term implications Identify early interventions that facilitate a social connection during and after treatment Social Competence: What is it? What do you call it? Social Functioning Social Skills Social Performance Friendships Social Networks Social Behavior Peer Relationships Social Adjustment Social Competence Social or Sociometric Status Social Interaction Social Competence: A Working Definition The socially competent individual is someone “who is able to make use of environmental and personal resources to achieve a good developmental outcome” Involves coordination of affect, cognition, and behavior Notice that this is not predicated on the quality of the environment, but a child’s ability to make the most of what s/he has to work with Waters & Sroufe, 1983 Factors Age of the child Qualitative shift around ages of 4-7 and 11-14 in social reasoning skills Grade Elementary, middle and high school Differences in context of interactions • Play, extracurricular activities, dyads, etc. Preschool First exposed to large numbers of kids Possibly a sensitive period for development of behaviors, attitudes and preferences that influence peer interactions/relationships Tri-Component Model Social Adjustment Social Performance The degree to which people are currently achieving socially and developmentally appropriate goals The extent to which a person is able to respond appropriately within a social situation Social Skills Cavell, 1990 The abilities that allow a person to perform a given social task competently Risk factors Social Outcomes in Childhood Brain Disorder Yeates et al., 2007 Risk Factors Medical Environmental Individual Medical Risk factors Diagnosis Age at diagnosis Prognosis Tumor type (e.g., craniopharyngioma, pontine glioma) Younger age Critical developmental period (preschool, adolescence) Treatment Length Intensity Association with late effects Environmental Risk Factors Parent involvement Providing opportunities for social interaction Monitoring social situations Providing a good model School involvement How connected is the child with school and what is the quality of that connection? What provisions have been made to maintain contact with the school during treatment (especially in terms of maintaining/resuming school attendance when possible)? Individual Risk Factors Temperament/Personality/Psychological Cognitive status Shy or aggressive children may have problems Children who are anxious or depressed are likely to have difficulty with social interactions Pre-existing mental health diagnoses like ADHD and autistic spectrum disorders are associated with problems with social functioning Attention and executive functioning Behavioral and emotional regulation Verbal skills Pre-morbid sociometric status How well-liked is this child by his or her peer group? How many friends does this child have? Social outcomes in children with CNS tumors Tri-Component Model Revisited 20 articles measuring social functioning in BT Social Majority of research Social performance None – tough to conduct with this population Social adjustment skills One study (facial expression recognition) Schulte & Barrera, 2010 Daily functioning in long-term survivors of medulloblastoma Maddrey et al., 2005 Long-term Social Functioning Deficits Isolation Few friends No dating Immaturity “Out of sync” Deficits impact their ability to interact in an age-appropriate manner with peers and adults Survivors & the Peer Group Exclusion from normal peer interactions Difficulty communicating Bullied Act younger than their age More comfortable with adults than children A marked change from premorbid functioning Vance, Eiser & Horne, 2004 Perceptions of Social Competence 4 3.7 3.4 3.1 2.8 2.5 2.2 1.9 1.6 1.3 1 Hardy, Willard, Watral & Bonner, 2010 On-Treatment Off-Treatment Survivors & the Peer Group Fewer friends than comparison classmates Reciprocal friends also have social deficits Lower popularity, more isolated, less accepted, teased Fewer reciprocal friends Picked less often as “best friend” Misperception of friends Identified friends are more socially desirable Gender differences Males more prosocial; females more isolated Vannatta et al, 1998; Vannatta, Gerhardt et al, 2006-2008 Survivors & Friends Survivors are not as engaged with friends as typically-developing children Survivors do not participate in interactions that require comfort, trust, negotiation Imaginative play Katz, Leary, Brieger & Friedman, 2011 Attention and Executive Functioning There is a strong correlation between parentreported social problems and attention difficulties In one study, parent report of social deficits was actually a stronger predictor of objectivelymeasured attention impairment than parent report of attention difficulties. Attention problems were significantly related to difficulties with adaptive functioning such that deficits in attention caused by treatment with radiation led to impairment in daily living skills Patel, et al, 2007; Papazoglou, et al, 2008, 2009 Facial Expression Recognition In healthy children, the ability to decode facial expressions is associated with ratings of social competence Deficits Low peer sociometric status Social anxiety Diagnostic Analysis of Nonverbal Accuracy – Revised (DANVA2) Baum &Nowicki, 1998 Diagnostic Analysis of Nonverbal Accuracy – Revised (DANVA2) Fearful Baum &Nowicki, 1998 Angry Survivors’ Social Skills: Facial expression recognition Bonner, Hardy, Willard, et al, 2008 Social Functioning & Facial Expression Recognition Medical predictors of deficits in facial expression recognition: Treatment with radiation Younger age at diagnosis Associations with measures of social functioning: More errors associated with poor reported social functioning Bonner, Hardy, Willard, et al., 2008 Gender Differences in Facial Expression Recognition Willard, Hardy & Bonner, 2009 Gender Differences in Facial Expression Recognition Female survivors experienced significantly more parent-reported social problems than male survivors These social problems were significantly associated with number of errors in facial expression recognition But only in females – no associations in males Willard, Hardy & Bonner, 2009 Assessment and Intervention A Conceptual Model of Assessment Social-Cognitive Factors Social Experience Medical Factors Neurocognitive Factors Affective Experience Step 1: Asking the right questions Asking about peer relations is important starting at diagnosis Ask the child, the parent, and (if possible) the teacher Ask about how well-liked the child is by his or her peer group at large Ask about how many good friends the child has Ask about a plan to maintain safe and appropriate contact with peers Tools for getting information Questionnaire measures can be helpful to start the conversation and screen for early problems If the child has had a neuropsychological assessment, consider any weaknesses in attention or general cognitive functioning Asking simple questions (e.g., “Has s/he been able to see any friends in the last month?”) frequently can capture issues early on School attendance is a big indicator – if the child is not regularly in school, s/he is not likely to have regular contact with same-aged peers. Measurement Tool: PedsQL Social Functioning subscale: Problems with… 1.Getting along with other children 2.Other kids not wanting to be his/her friend 3.Getting teased by other children 4.Not able to do things that other children his/her age can do 5.Keeping up when playing with other children Varni and colleagues, 1999, 2001, 2002 Measurement Tool: Child Behavior Checklist Social Problems subscale: Clings to adults/dependent Complains of loneliness Doesn’t get along with others Easily jealous Feels others are out to get him Accident-prone Gets teased Not liked by others Clumsy Prefers being with younger children Speech problems Achenbach, 1991; Achenbach & Rescorla, 2001 Measurement Tool: Conners’ Rating Scale Peer Relations subscale: Has trouble keeping friends Has no friends Appears to be unaccepted by group Interacts well with other children Has poor social skills Does not know how to make friends Is one of the last to be picked for teams or games Conners, 1997, 2008 Measurement Tool: Social Skills Rating/Improvement System Social Skills Says “thank you” Follows household rules Takes turn in conversations Interacts well with other children Makes friends easily Tolerates annoying peers Joins activities that have started Compromises Gresham & Elliott, 1990, 2008 Problem Behaviors Keeps others out of social circles Fidgets Stereotyped motor behaviors Withdraws Bullies Sleeping problems Cheats Lonely Measurement Tool: Emory Dyssemia Index Gaze and Eye Contact Space and Touch Paralanguage Facial Expression Objectics Social rules/norms Nonverbal Receptivity Duke & Nowicki, 2005 Fails to look at others Stands too close Speaks too softly Fails to look interested Interests “out of sync” Lacks “common sense” Behavior is “out of sync” Measurement Tool: Social Competence Inventory Social Initiative Often suggests game/activities Withdrawn from peers Hesitant with peers Spectator instead of participant Tends to be dominated by peers Is often a leader Easily makes contact with unfamiliar kids Rydell, Hagekull & Bohlin, 1997 Prosocial Orientation Tries to comfort peers Is able to interpret feelings Able to sympathize Shares belongings Demonstrates helpfulness Criticizes peers Plays and cooperates well Measurement Tool: Social Problem Solving Vignettes Alex and some other kids are playing on the jungle gym at school. You would like to play with them, but they haven’t asked you. What could you do or say so that you can play with Alex and the other kids? Rose & Asher, 1999, 2004 Strategy & Goal Assessment You and your friend are planning to study for a test together. You want to study with only your friend, but your friend asks another person to study with you. What would you say or do? What would your goal be? Assessment Limitations Questionnaire ratings (especially by parents) don’t always correlate well with the child’s real-life social competence Peer relations researchers don’t rely on questionnaire data; they collect information from entire peer groups (called sociometrics) Sociometric procedures are impractical and not costeffective for pediatric cancer survivors Moreover, although sociometrics are good at describing what is happening, they provide little information as to why…. We have not been able to identify skills deficits that could be targeted in an intervention Step 2: What can be done when there is a problem? In order for a good referral to be made, having an idea of why the problem is occurring is important Medical • Cognitive late effects • Disfigurement or physical limitations Environment • Child is not in school or no longer participates in extracurricular activities • Parent is overprotective OR child is afraid to do things on his or her own Individual • New symptoms of anxiety or depression • Lack of appropriate social skills Intervention – what is in the literature? Few completed studies Very small sample sizes (n = 13 to 32) and no randomized design Involved skills training at the group level Limited by the measures used to assess change (largely parent report) Discrepancy between measure scores and parent anecdotal report Barakat et al, 2003; Barrera & Schulte, 2009; Die-Trill et al, 1996; Mulhern et al, 2004; Conklin et al, 2010 DieTrill et al., 1996 Small study of a group intervention for male survivors focused on assertiveness training and how to handle teasing Boys and parents liked the intervention and reported better social functioning, but the measure was not standardized Barakat et al., 2003 13 children completed social skills training Social functioning was measured by standardized rating scales 1 month before the intervention and 10 months afterwards Again, ratings of social skills improved, but the single arm design and small sample size limits the ability to interpret the findings Barrera & Schulte, 2009 Pilot study of an 8-week social skills group for 32 brain tumor survivors Assertiveness training Friendship making skills Study was feasible and associated with improved parent ratings of survivors’ self-control, social skills, and quality of life Again, a single arm design and reliance on parent report limits generalizability of findings What can clinic providers do? Frequent assessment and prompt referral is likely to be the best approach Try to match an intervention with the reason you think a problem is occurring E.g., If the child is not being given an opportunity to socialize due to a parent’s fears about contagious illness, parent education may be needed When social skills instruction is needed, it is important to keep in mind that this type of intervention tends to make it more likely that children can make a friend, not necessarily that they will be better liked by their peer group at large What is on the horizon? Addressing problems with cognitive functioning Data from the Ritalin trial showed improvements in social functioning after treatment with stimulant medications Computerized cognitive training? Cognitive rehabilitation? Understanding what social skills need to be addressed Do we focus on teaching skills? What skills should we teach? Summary Children with CNS tumors are at risk for social problems, especially after treatment ends Problems are likely to be related to changes in cognitive functioning, as well as pre-existing social difficulties, but environmental factors like prolonged school absences also are likely to play a role Intervention strategies are few, but monitoring of social functioning should be done early and often Questions?