Child Life Council 26 th Annual Conference on Professional Issues

Child Life Council 26 th Annual Conference on Professional Issues 22. Redrawing the Wonder Years: Functional, Context-Sensitive Intervention in Acquired Brain Injury Presented By: Heather Crawford, CCLS, Child Life Specialist, Children's Hospital of Eastern Ontario Maureen Jones, CCLS, Child Life Specialist, Children's Hospital of Eastern Ontario

Redrawing the Wonder Years: Functional, Context-Sensitive Intervention in Acquired Brain Injury Heather Crawford,CCLS, Child Life Specialist, Children s Hospital of Eastern Ontario, Ottawa, Ontario & Maureen Jones, CCLS, Child Life Specialist, Children s Hospital of Eastern Ontario, Ottawa, Ontario Introduction Us Collective Experience Background Pivotal Changes in Process Everything is Relative Acquired Brain Injury Definition: Non-degenerative brain injury acquired after birth resulting from an external / internal cause Subcategories: 1. TBI :External Cause: Closed or Open Head Injury Prominent characteristics: Prefrontal: a) Unaware of deficits, implications of deficits b) Disinhibition, lack of initiation, impaired social perception c) Decrease control over cognitive process; memory, organization, strategic thinking d) May process information slowly

Subcategories contd Temporal a) Difficulty learning new information, new skills, controlling emotional responses 2. Internal Cause Tumor, Stroke, Encephalitis, Meningitis, Anoxia, Arterial Valve Malformation, Other Considerations in Pediatric ABI Pre-frontal lobe injury = association with cognitive,social,behavioral educational impairment. Long-term outcome? Unpredictability! Severe injury seemingly excellent recovery progressive deterioration over successive developmental stages (growing into disability) Considerations in Pediatric ABI Changing profile over time Acute psychosocial issues for child and family. Loss and mourning Identity reconstruction issues

Context- Sensitive Routine - Based Rehabilitation What does this mean? Ylvisaker & Feeney: Multi-component framework for children and adolescents with behavioral, cognitive and executive system impairment associated with ABI/ frontal lobe injury. Integration of domains of functioning Delivered in context of routines and meaningful activities in child s life. Primary goal is to assist the child & family to achieve real life goals in real world settings. Review of Relevant Themes and Research Traditional transfer of training - efficacy studies context-sensitivity Positive developments in paediatric brain injury rehabilitation have demonstrated increasing focus on context factors and integration across many domains of function. - Shift from traditional framework of retraining by specialist to everyday, routine based intervention for long-term rehabilitation - Last 20 years have witnessed increased respect for role of families as invaluable source for assessment information, realistic/reasonable goals. Research results: Lucia Braga, Brazil Person-centered intervention and supports Family-centered interventions and supports Positive everyday routine based interventions Integration

Programming Interdisciplinary with patient/family at center of care Child life goals and interventions based on collaborative framework Integral components: Prevention of challenging behaviors with positive setting events Behavioral momentum and steps for success Communication alternatives Provision of opportunities for choice-making, selfadvocacy and empowerment Functional approach Ylvisaker & Feeney Functionally based interventions provide opportunities to work on strategies which assist with compensating for newly acquired deficits within the context of their daily lives. Cognitive Behavioral Social Skills Intervention Transition Starting point: Recovery phases Early phase (emergence from coma) Framework; promotion of agency in child, adolescent Middle (confused) Choice-making with ADL s Visual representation routine therapeutic activities Scaffolding Late phase (increased orientation to world around them) Appropriateness of goal-directed behaviour Rehabilitation efforts consistent with child s age, developmental level

Programming goals 1. Know what they are good at, what is difficult. 2. Provide options when tasks are difficult. 3. Plan to get work done. 4. Process 5. New approach if necessary. 6. Modeling, coaching within context of everyday routines and conversational interaction. Cognitive Intervention Cognitive Domain: Organization Memory Language Conceptual framework promotes the integration of attention, memory, planning, organizing and reasoning. Thinking, feeling, and acting Individual and social Context and domain sensitive teaching thinking Compensatory strategies a) Visual journal organizers, routine planner b) Doable tasks c) Mentoring apprenticeship teaching d) Errorless learning: Illustration

Behavioral Self-Regulation Developmental theory: Vygotosky Within Ylvisaker & Feeney framework, executive functioning/self-regulation are seen as integrated for purposes of functional intervention. Importance of executive functioning/self-regulation is emphasized as a critical factor in social success,academic success, vocational success, independent living Behavioral Self-Regulation Executive functioning Goal formulation Planning Execution Self-regulation; using thought to guide behavior Everyday routines of interaction scripts - knowledge of what to do Self-understanding Autonomy Initiation/Inhibition Strategic thinking,learning,behavior Maturity Positive Behavior Supports (PBS) Goal = choice - Positive communication alternative - Learned helplessness versus learned optimism

Social Skills Cognitive and behavioural challenges often interact to produce most challenging obstacles to academic and social success Vygotsky ; cognitive processes are based on social interaction between children and caregivers. 1. Teaching positive communication alternatives to negative behaviour 2. Individuals with ABI often retain knowledge of social rules 3. Individuals with social skills impairment based on EF impairment require point of participation intervention and support 4. Self-coaching and self-regulation: automatic, selfregulatory self-talk Transition Short road and the long road The short road: Enhancing social interaction Hospital / Rehabilitation Center Interaction Support Behaviour supports The long road:paediatric Brain Injury Rehabilitation Considerations: Context: hospital to home Reduced length of stay in children s hospital and rehabilitation centers Dramatic individual differences in outcome = individualized programming References Brooks, R.B. (1994). Fostering resilience and hope. American Journal of Orthopsychiatry, 64(4): 545-553. Brooks, R.B. (1992). Self-esteem during the school years. Its normal development and hazardous decline. Pediatric Clinics of North America, 39:537-550. Gaynard, L., Wolfer, J.Goldberger, J., Thompson, R. Redburn, L. & Laidley, L. (1990). Psychological Care for Children in Hospitals: A Clinical Practice Manual for the A.C.C.H. Child Life Research Project, Bethesda, Maryland, A.C.C.H. Hart, R., P., Slack, J. & Powell, M. (1992). Caring for Children and Families: Guidelines for Hospitals. Bethesda, Maryland.

References Mastern, A. and Coatsworth, J.D. (1998). The development of competence in favorable and unfavourable environments. Lessons from research on successful children. American Psychologist, 53 (2) 205-220. Orlick, T., (1993). Free to Feel Great: Teaching Children to Excel and at Living. Carp, Ontario, Creative Bound. Orlick, T., (1995). Nice on My Feelings- Nurturing the Best in Children and Parents, Carp, Ontario, Creative Bound. Sieving, R., and Zirbel-Donish, S. (1990). Development and enhancement of self-esteem in children. Journal of Pediatric Health Care, 4:290-296. References Stewart, M., Reid, G., & Mangham, C. (1997). Fostering children s resilience. Journal of Pediatric Nursing. 12: 21-31. Walker, S. and Wicks, B. (2005) Educating Children with Acquired Brain Injury. Great Britain: David Fulton Publishers. Ylvisaker, M., Adelson, D., et al.(2005) Rehabilitation and ongoing support after Pediatric TBI: Twenty years of progress. J Head Trauma Rehabilitation 20, 95-109. Ylvisaker, M., Feeney, T.J., (1995). Traumatic brain injury in adolescence: assessment and reintegration. Seminars in Speech and Language, 16 32-45. References Ylvisaker, M., Urbanczyk, B., & Feeney, T.J., (1992). Social skills following traumatic brain injury. Seminars in Speech and Language, 13 308-321. Ylvisaker, M., (ed.) (1998) Traumatic Brain Injury Rehabilitation- Children and Adolescents, 2 nd edn. Boston, MA. Butterworth- Heinemann. Ylvisaker, M., Szekeres, S. F. and Feeney, T, (1998) Cognitive Rehabilitation: Executive Functions, in Ylvisaker, M. (ed.) Traumatic Brain Injury Rehabilitation Children and Adolescents, 2nd edn. Boston, MA: Butterworth-Heinemann, pp. 221-384.