Development and Evaluation of Empirically Based Interventions for Families After Adolescent ABI

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1 Development and Evaluation of Empirically Based Interventions for Families After Adolescent ABI Caron Gan, RN, MScN, AAMFT Approved Supervisor Registered Marriage & Family Therapist Clinical Team Investigator Toronto abi Network Conference 2014

2 Objectives Provide brief overview of research on family needs after pediatric ABI Introduce the Brain Injury Family Intervention for Adolescents (BIFI-A) Discuss outcomes of knowledge translation activities 2

3 Impact of Pediatric ABI on Families Significant levels of anxiety and depression in 40% of parents (Wade et al., 1998) High levels of psychological distress and family burden (Anderson et al., 2005) Psychological distress persists or worsens (Brown et al, 2013) Struggles with work and finances are significant family stressors (Aitken 2009) Increased tension in marital relationship (Brown et al, 2013) 3

4 Sibling Response to Pediatric ABI 46% report emotional reactions, school problems or aggressive personality changes (Harris et al., 1989) Increase in personal responsibilities, family distress, concern for the future (Willer et al., 1990) Need for support, information about ABI, direction, and communication (O Hara et al., 1991) Increased psychological distress and less effective problem solving (Orsillo et al., 1993) Loss of parental affection (Peretti et al., 1995) 4

5 Increased parental stress Poorer family outcome Behavior problems in child with ABI Taylor et al,

6 Family Needs after Pediatric ABI As physical and cognitive recovery stabilizes, psychosocial and behavioral difficulties emerge increased stress on families (Anderson et al., 2005) Need for information, parenting strategies, and support around emotional adjustment and coping (Brown et al, 2013) 2/3 of parents report unmet needs around health information, medical support, family support & return to school 2 4 years post-rehab (Hermans et al, 2012) Unmet health care needs associated with increased caregiver burden (Aitken et al., 2009) 6

7 The Brain Injury Family Intervention Adolescent Version Caron Gan Holland Bloorview Kids Rehabilitation Hospital Toronto, Ontario, Canada Judith Gargaro Holland Bloorview Kids Rehabilitation Hospital Toronto, Ontario, Canada Jeffrey S. Kreutzer Virginia Commonwealth University Richmond, Virginia, United States 7

8 What is BIFI-A? Family system intervention for adolescents (13 19 years) with ABI and their families Derived from adult BIFI Twelve session protocol Activity-based curriculum - family discussion, vignettes, role plays, and interactive exercises Pace and topics tailored to suit individual needs Gan, Gargaro, Kreutzer, Boschen, & Wright. Development and preliminary evaluation of a structured family system intervention for adolescents with brain injury and their families. Brain Injury, 2010;24(4):

9 Why an Adolescent Version of BIFI? Recovery patterns differ Growing into injury Developmental issues Sibling adjustments School issues Transition to adulthood

10 Prevalence of TBI Among Adolescents in Ontario One in five students in Grades 7-12 reported having had a TBI in their lifetime Sports such as ice hockey and soccer accounted for more than half the injuries TBI s were reported more often by males than females, by those with lower school grades and by those who used alcohol or cannabis in the previous 12 months Ilie et al. Prevalence and Correlates of Traumatic Brain Injuries Among Adolescents. JAMA, 2013; 309 (24):

11 BIFI-A Primary Components education skill building psychological support 11

12 BIFI-A CURRICULUM Session Topics 1 Assessment 2 What happens after brain injury 3 Brain injury happens to the whole family 4 Being a teen and achieving independence 5 Emotional and physical recovery are different things 6 Coping with loss and change 7 Managing intense emotions 8 Managing stress and taking care of self 9 Setting s.m.a.r.t. goals and tracking progress 10 Learning patience and solving problems 11 School, transitions, and preparing for adulthood 12 Wrap-up celebrating successes and accomplishments 12

13 Education What is ABI? Adolescent development How ABI affects development School transitions 13

14 Education About ABI Common changes after brain injury Strategies to deal with changes after brain injury Helps to normalize people s experiences and reframe negative beliefs about the person with the ABI Helps people recognize another explanation for the behaviors 14

15 What Can Happen Following a Brain Injury 5BCHANGES IN EMOTIONS A normally even tempered child or teen may become very emotional and unpredictable Frequent angry outbursts Frequent crying spells Sudden changes in mood for no apparent reason May become withdrawn or depressed May become easily angered or frustrated 6BWHAT YOU CAN DO Establish if there is fatigue Eliminate over stimulating situations Reassure your child/teen that it is normal to be emotional following an ABI Get advice on how to arrange counseling for your child/teen Use time-out if things get out of control or if there is aggression Help find better ways to express themselves Encourage your child/teen to talk about their feelings 15

16 Adolescent Brains Works in Progress 16

17 Education Support What is TBI? Family system support Adolescent development Emotional expression How TBI affects development Coping with loss & change School transitions Emotional & physical recovery 17

18 Topic 2: Brain injury happens to the whole family Who Said It? Family Change Questionnaire + Feeling Faces Personal reactions to the injury Impact on the family system Every family member needs support

19 Rebuilding Positivity Explore ways the family can have fun both together and individually and how this helps with recovery Focus on accomplishments, not failures Help clients and families discover the positive changes that have come about despite the ABI 19

20 Education Support Skill Building What is TBI? Family system support Setting s.m.a.r.t. goals Adolescent development Emotional expression Stress management How TBI affects development Coping with loss & change Problem solving School transitions Emotional & physical recovery Coping with intense emotions 20

21 Challenging Negative Belief Systems Thoughts, feelings, physical reactions and behaviours are inter-connected If you change the way you think and behave, you can also change the way you feel (physically & emotionally) Thoughts My Body Feelings Behavior 21

22 Setting goals S M A R T SPECIFIC MEASURABLE ACHIEVABLE REALISTIC TIME-BOUND 22

23 Topic 6: Managing intense emotions Feelings Questionnaire - common emotions experienced post-injury Skills for emotional expression Brainstormers Strategies for managing anger and intense emotions S T A top hink ct 23

24 Topic 7: Managing stress and taking care of self Things that cause me to feel stressed Identifying signs of stress Strategies for effective stress management and self-care 24

25 Wrap-Up Highlighting Family Resilience Weaving a Web pulling together as a family unit Highlighting individual and family strengths Focusing on accomplishments and progress Celebration of successes Preparing for future challenges and ways to keep getting better 25

26 Future Directions... Further evaluation of BIFI-A outcomes 26

27 Brain Injury Family Intervention Training (BIFI/BIFI-A): An Evidence-Based Approach June 11-12, 2015 This two-day intensive workshop focuses on clinical intervention skills for professionals (e.g., social workers, rehab therapists, psychologists, case managers) who work with families of persons who have sustained a brain injury. 27

28 Pre-post self-evaluations (n=219) 1. Knowledge about impact of ABI on families 2. Familiarity with theoretical models of post- ABI family intervention 3. Self-confidence in assessment and intervention skills 4. Possession of tools to work effectively with families after ABI 5. Confidence in skills required to address complex family situations. 28

29 Pre-Post Training Mean Scores 29

30 Outcomes of 2-Day BIFI/BIFI-A Training Statistically significant improvements in participants knowledge, confidence, and skills in working effectively with families after ABI Integration of research, education and knowledge translation to enhance clinical care for clients with ABI and their families 30

31 In closing. ABI brings about many stresses and challenges for teens and their families BIFI-A intervention provides clinical practical guidelines and a systematic approach to family intervention after pediatric ABI Clinicians can benefit from a family focused training program to enhance confidence and skills in working with families after ABI 31

32 Join us in Toronto! June 11-12,

33 From disability to possibility

34 Caron Gan, RN, MScN AAMFT Clinical Fellow & Approved Supervisor Registered Marriage and Family Therapist Clinical Team Investigator Bloorview Research Institute Phone: , extension 3514 Fax:

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