1. INTERVENTIONS AND WELL-BEING INITIATIVES Kathleen A Kapp-Simon, Ph.D. Northwestern University and Cleft-Craniofacial Clinic Shriners Hospitals for Children Chicago, IL

2. Well-Being How well a persons life is going: Whats good for them or makes them happy. How well a persons life is going: Whats good for them or makes them happy. Family relationships Family relationships Social relationships Social relationships Intellectual pursuits Intellectual pursuits Relaxation Relaxation Health related quality of life Health related quality of life

3. Goals of Treatment Medical/Surgical Management Medical/Surgical Management Optimal Physical Functioning Optimal Physical Functioning Best Possible Facial Appearance Best Possible Facial Appearance Psychological Outcomes Psychological Outcomes Optimal Behavioral/Emotional Adjustment Optimal Behavioral/Emotional Adjustment Social Competence Social Competence Maximal Cognitive/Academic Development Maximal Cognitive/Academic Development

4. CHALLENGES: Managing Differing Priorities Family Issues Family Issues Siblings Siblings Economic Resources Economic Resources Social Support Social Support Child Needs Child Needs Emotional Needs Emotional Needs Social Social Educational Educational Surgery Surgery Timing/frequency Expectations vs Outcomes Therapies Therapies Time Commitment Child/Parent Effort

5. Social Problems Social Inhibition Social Inhibition Withdrawal Withdrawal Anxiety Anxiety Peer Teasing Peer Teasing

6. Factors Associated with Social Competence in CFC Literature Parent Interaction Style Parent Interaction Style Parenting Stress Parenting Stress Child Friendliness Child Friendliness Emotional Self-Awareness Emotional Self-Awareness Self-Concept Self-Concept

7. Factors Associated with Social Competence in Child Literature Social Anxiety Social Anxiety Aggression Aggression Inhibition Inhibition Friendliness Friendliness Self-Perception Self-Perception Childs Perception of Peers Childs Perception of Peers

8. Variability of Child Characteristics Temperament Temperament Social Skills Social Skills Self-Perception Self-Perception

9. Temperament Emotionality Emotionality The way a child responds to distress, fear, or anger The way a child responds to distress, fear, or anger Activity Level Activity Level A childs ability to attend to a situation A childs ability to attend to a situation Cognitive distractibility/persistence Cognitive distractibility/persistence Sociability Sociability A childs tendency to approach or avoid new people or situations A childs tendency to approach or avoid new people or situations

10. Personality Types Resilient child Resilient child Socially competent Socially competent Exhibits positive emotions Exhibits positive emotions Over controlled child Over controlled child Extremely shy Extremely shy Variable Compliance Variable Compliance Dependent Dependent Under controlled child Under controlled child Uncooperative Uncooperative Noncompliant Noncompliant Negative emotions Negative emotions

11. Impact on Treatment The Resilient Child The Resilient Child Cooperative Cooperative Participate in Assessments Participate in Assessments Emotion proportionate to situation Emotion proportionate to situation

12. Impact on Treatment Over controlled child Over controlled child Sociability: Shy, slow to warm up Sociability: Shy, slow to warm up Emotionality: Distressed/fearful Emotionality: Distressed/fearful Activity level: Good attention skills/ hyper- aware Activity level: Good attention skills/ hyper- aware

13. Impact on Treatment Under-controlled Child Under-controlled Child Sociability: Often outgoing, but inappropriate approaches. May intrude into spaces or conversations Sociability: Often outgoing, but inappropriate approaches. May intrude into spaces or conversations Emotionality: Unpredictable responses to stressful situations; emotional outbursts, aggression Emotionality: Unpredictable responses to stressful situations; emotional outbursts, aggression Activity level: Difficulty sustaining behavior through long clinic exam; runs around exam room, destroys equipment, toys etc. Activity level: Difficulty sustaining behavior through long clinic exam; runs around exam room, destroys equipment, toys etc.

14. Parent-Professional Responses Parent Parent Calm Calm Expectant Expectant Professional Professional Provide adequate time for child to warm up Provide adequate time for child to warm up Exude warmth and understanding Exude warmth and understanding Provide direct but simple explanations of what is expected of the child Provide direct but simple explanations of what is expected of the child Allow the child to save face Allow the child to save face

15. Encouragement* Focus on what child can do Focus on what child can do Communicate to the child that you believe she is capable of the task before her Communicate to the child that you believe she is capable of the task before her Expect cooperation Expect cooperation But accept a valiant effort But accept a valiant effort Provide specific feedback Provide specific feedback You put your tongue exactly where we talked about and you made a great t sound. You put your tongue exactly where we talked about and you made a great t sound. *Nelsen, Erwin & Duffy, 1998

16. Anxiety Management Relaxing Breathing Relaxing Breathing Muscle Relaxation Muscle Relaxation Visualization Visualization Positive Self-Talk Positive Self-Talk Distraction Distraction

17. Fostering Emotional Development* Emotional Awareness Emotional Awareness Teach the child words that express emotions: Teach the child words that express emotions: Happy, sad, excited, worried, disappointed, angry Happy, sad, excited, worried, disappointed, angry Be aware of childs perspective on situation Be aware of childs perspective on situation Recognize your own emotions in situation Recognize your own emotions in situation *Gottman & DeClaire, 1997

18. Fostering Emotional Development Emotions Provide Opportunities for Teaching Emotions Provide Opportunities for Teaching Recognize and acknowledge emotions early Recognize and acknowledge emotions early Responding to strong emotions with empathy and patience increases childs ability to solve problems Responding to strong emotions with empathy and patience increases childs ability to solve problems

19. Fostering Emotional Development Use Active Listening to Validate Childs Feelings Use Active Listening to Validate Childs Feelings Take childrens feelings seriously Take childrens feelings seriously Use words to communicate understanding and acceptance: Youve been very quiet since we left the clinic, Im wondering if youre disappointed about having to wait another year for the lip revision? Use words to communicate understanding and acceptance: Youve been very quiet since we left the clinic, Im wondering if youre disappointed about having to wait another year for the lip revision? Specific identification of a feeling and the situation that generated the feeling. Specific identification of a feeling and the situation that generated the feeling.

20. Fostering Emotional Development Recognize Difference between Feelings and Behavior Recognize Difference between Feelings and Behavior Feelings are neither good nor bad; Actions are choices and can be for better or worse Feelings are neither good nor bad; Actions are choices and can be for better or worse Child has a right to feel angry about having an IV that limits his mobility; choosing to pull the IV is not a good option Child has a right to feel angry about having an IV that limits his mobility; choosing to pull the IV is not a good option Parents/professionals can help child by accepting his feelings while simultaneously guiding him to identify an adaptive solution Parents/professionals can help child by accepting his feelings while simultaneously guiding him to identify an adaptive solution

21. Fostering Emotional Development Self-confidence Self-confidence School achievement School achievement Compliance Compliance Social competence Social competence Health Health

22. Social Skills Behaviors that enhance social interaction Behaviors that enhance social interaction Positive peer relationships protect a child from being teased or bullied Positive peer relationships protect a child from being teased or bullied Positive peer relationships help develop self- esteem Positive peer relationships help develop self- esteem Friendships enhance confidence and minimize feelings of depression and isolation Friendships enhance confidence and minimize feelings of depression and isolation

23. Social Skills Pragmatic skills Pragmatic skills Eye contact Eye contact Tone of voice Tone of voice Social distance Social distance Rhythm of communication Rhythm of communication

24. Social Skills Skills for joining a group Skills for joining a group Smile at one or more of the children in the group as you walk toward them Smile at one or more of the children in the group as you walk toward them Observe what group is doing or talking about Observe what group is doing or talking about Join in by participating in conversation or group activity Join in by participating in conversation or group activity

25. Social Skills Making Friends Making Friends Pay attention to peers interests/conversation Pay attention to peers interests/conversation Have ideas about activities Have ideas about activities Give compliments Give compliments Use Active Listening Use Active Listening

26. Self-Talk Learn to listen to internal voice Learn to listen to internal voice Consciously reframe message Consciously reframe message I can sit with Jonathon at lunch I can sit with Jonathon at lunch I know how to play soccer. I can join that group I know how to play soccer. I can join that group Use anxiety-management techniques Use anxiety-management techniques Take a deep breath Take a deep breath Imagine a successful approach Imagine a successful approach

29. Parent-Professional Collaboration to Promote Child Well-Being

30. Thank You!