Weaving a Web of Family Support After ABI
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Transcript of Weaving a Web of Family Support After ABI
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Weaving a Web of Family Support After ABI
ABI Network Conference 2008
Caron Gan, RN, MScN, AAMFT Approved Supervisor
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Investigative Team
Caron Gan – Bloorview Kids Rehab
Virginia Wright – Bloorview Research Institute
Kathryn Boschen – Toronto Rehabilitation Institute
Jeffrey Kreutzer – Virginia Commonwealth University
Judy Gargaro – Bloorview Kids Rehab
Funded by Bloorview Research Institute
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Acknowledgements
Expert PanelAnna Marie Batelaan
Pauline Berry
Jeanette Cato
Lies Ferriman
Bill Ferriman
Mary Ellen Keyes
Daniel Perry
Beverly Perry
Douglas Schmidt
Beverly Solomon
Test CliniciansRebecca Swift-Weir
Kathy Gravel
Valerie Lusted
Participant Families
Virginia Commonwealth University
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The Problem
• Impact of brain injury on the family system
• Increased strain, depression, burden, anxiety and psychological distress in family members
• Long-term negative effects on family functioning
• Relationship between family and individual outcomes
• Support, counselling, information, and educational needs
• Lack of evidence-based family interventions
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The Research Evidence – Family Interventions After Brain Injury(Boschen, Gargaro, Gan, Gerber, & Brandys, 2007)
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Articles Pre-Post RCT
All Fields
Brain Injury
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The Brain Injury Family Intervention (BIFI)(Kreutzer, Kolakowsky-Hayner, Demm, Meade, 2002)
• Guided by 30 years of research and clinical experience
• Structured family system intervention
• Focus on education, skill building, and support
• Five-session ten-week intervention
• Each session 1 ½ to 2 hours
• Manualized into a step-by-step protocol
• NIDRR grant to evaluate efficacy of BIFI – RCT Virginia Commonwealth University TBI Model System
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BIFI Goals
1. Information about common challenges after ABI
2. Impact on family members and the family as a system
3. Problem solving skills
4. Coping strategies
5. Strengths and progress
6. Effective communication skills
7. Foundation of knowledge and strategies to move forward
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Health Information
Emotional Support
Instrumental Support
Professional Support
Community Support
Care Involvement
change pre- vs. post-treatment
n=53
p < .05 for all comparisons
FNQ Subscale Score Post-Intervention Changes(change in mean number of met needs)
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Pre-Treatment Post-Treatment Follow-Up
*p=.0001
**lower scores denote fewer perceived obstacles
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Service Obstacle Scale
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Pre-Treatment Post-Treatment Follow-Up
*p=.051
**lower scores denote lower levels of emotional distress
n=53
Depression SubscaleBrief Symptom Inventory
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family members’ ratings of the client…
Neurobehavioral Functioning InventoryDepression Scale
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Applicability of BIFI to Adolescents?
• Recovery patterns differ
• Growing into injury
• Developmental issues
• Transition to adulthood
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Entering the World of Adolescents # * !
It is common for adolescents to:
– Argue for the sake of arguing
– Be self-centred
– Challenge authority
– Be moody
– Behave impulsively
– Take unnecessary risks
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Whatever It Takes (WIT) Model of Family Intervention
• Monroe (1990)
• Based on work with highly dysfunctional families
• Principles of behavioural conditioning
• Family systems orientation
• Shortcomings – poorly designed, non-experimental
• Single case study – shows some promise
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What we did….
• Developed an adolescent version of the BIFI
– Families with an adolescent with ABI (13 – 19 years)
• Modified the adult BIFI to have an adolescent focus
– Generated new topics – expert panel
– Modified some original topics
– Modified curriculum to be more youth friendly
• Feasibility testing: 3 test clinicians, 8 adolescents with ABI and 14 family members
• Developed 1st edition of BIFI-A clinician manual
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Feasibility testing – Teen participants
• 5 males, 3 females
• Ages 13 – 18 (mean 14.63 years)
• Time post injury - .5 to 14 years
• Cause of injury
– Pedestrian 2
– Fall 2
– Skateboard 1
– Aneurysm 1
– Stroke 1
– Encephalitis 1
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Family participants (n = 14)
Mothers
Fathers
Brothers
Other
n = 7n = 4
n = 2
n = 1
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Average rating per session (family participants)
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Teen with ABI
Family members
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Clinician ratings
Clinician Summary
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What we learned from feasibility testing
• Sessions “too long”
– Keep it to 1 topic/session
• “Some of the talk is boring and pointless”
- Need for interactive exercises to keep teen and sibling engaged
• Decrease paper/pencil tasks
• Simplify handouts
• No homework!
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BIFI-A (First Edition)
• Twelve sessions
– Assessment
– 10 topics
– Wrap-up
• Each session is ~ 60 minutes
• Family discussion, worksheets, vignettes, role plays, and interactive exercises
• Sessions implemented hierarchically
• Pace and topics tailored to suit individual family needs
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psychological support
skill building
education
BIFI-A Primary Components
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Topic 1: What happens after brain injury?
• Incredible brain facts
• What are common changes after brain injury?
FRONTAL LOBEAttention and concentrationEmotional controlJudgmentInitiation (starting things)Impulse control Planning and organizing
PARIETAL LOBESense of touchKnowing right from leftKnowing size, shapes, and coloursNaming objectsEye-hand coordination
TEMPORAL LOBEMemoryHearingUnderstanding languageSequencingRecognizing faces
OCCIPITAL LOBEVisionRecognizing objects or wordsIdentifying coloursReading and writing
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Topic 2: Brain injury happens to the whole family
• Personal reactions to the injury
• Impact on the family system
• Every family member needs support
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Family member: How did you feel when you first learned that your family member had a brain injury?Teen with ABI: How did you feel when you first learned that you had a brain injury?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________How did you feel when you began to learn that the brain injury might not fully go away?___________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ How has the brain injury affected your life? (e.g., work, chores, school, friends, activities, money)________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Which changes have been the hardest for you?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
How has the brain injury affected your plans for the future?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
FAMILY CHANGE QUESTIONNAIRE
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Topic 3: Being a teen and achieving independence
• Is it brain injury or adolescence?
• Normal adolescent development
• Challenges facing adolescents with ABI and their families
• Ways of supporting independence
• Dr. Phil
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Topic 4: Emotional and physical recovery are two different things
• Difference between emotional and physical recovery
• Pace and process of recovery
• Obstacles to recovery
• A Lot on My Plate
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Topic 5: Coping with loss and change
• Grieving process after brain injury
• Reactions to loss and change
• Strategies for coping
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scaredangry happy
tireddisappointed
confused
worried stressedpleased
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Topic 6: Managing intense emotions
• Common emotions experienced post-injury
• Skills for emotional expression
• Strategies for managing anger and intense emotions
S top T hink A ct
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Topic 7: Managing stress and taking care of self
• Early warning signs of stress
• Ways of monitoring stress
• Strategies for effective stress management and self-care
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Topic 8: Setting s.m.a.r.t. goals & tracking progress
• Difference between poor goals and s.m.a.r.t. goals
• Tracking progress
• Setting s.m.a.r.t. goals
Specific
Measurable
Achievable
Realistic
Timelines
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I think I can achieve this goal in ________ weeks/months
Step 1- I will have achieved:
This is what I have done so far:
Step 2- I will have achieved:
Step 3- I will have achieved:
Step 4- I will have achieved:
Completed □ Completed □ Completed □ Completed □
BIFI-A: Setting s.m.a.r.t. goals and tracking progress
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Topic 9: Learning patience and solving problems
• Identify problem solving personality
• Skills for effective problem solving
• Practical strategies for remaining patient
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Worksheet #31: Problem Solving Personality Questionnaire Circle True if the statement describes you and False if not. T F 1. I tackle problems head on. T F 2. I have so many problems to work on I usually don’t know where to start. T F 3. I am usually not patient. T F 4. I usually have clear goals. T F 5. I usually let other people solve my problems for me. T F 6. I am a creative problem solver and a positive thinker. T F 7. Most of the time I don’t have a back-up plan if things don’t work out. T F 8. I try to get good advice from others. T F 9. I’m good at setting priorities and working on only one problem at a time. T F 10. I usually don’t ask for help.
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Topic 10: School and transition planning
• Common challenges in returning to school after ABI
• Strategies to support successful school transitions
• Resources to support transition to adulthood
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Wrap-Up
• Individual and family strengths
• Focusing on accomplishments and progress
• Ways to keep getting better
• Celebration of successes
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What family members said about BIFI-A …
Learn how other family members feel about things
Helped me deal with stress in a healthy way
We can set goals and work on them – don’t have to do it alone
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What adolescents with ABI said about BIFI-A …
That my mom was overprotective because she worried about me
Liked coming together to learn about ABI
Learned that my mom and dad get stressed too
It was infamacious!
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Lessons learned from BIFI-A feasibility testing
• Importance of clinicians having family therapy skills, mental health training, or access to clinical supervision
• “Only those trained in psychological counselling should facilitate these discussions”
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Where do we go from here?
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Thank you
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Caron Gan, RN, MScN, AAMFT Approved Supervisor
Registered Marriage and Family TherapistFamily Support ServiceBrain Injury Rehabilitation TeamBloorview Kids RehabToronto, Ontario M4G 1R8
Phone: 416-425-6220, extension 3514Fax: 416-424-3880E-mail: [email protected]