weaving a web of family support after abi - brainline
TRANSCRIPT
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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 Clinicians
Rebecca 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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0 0.5 1 1.5 2 2.5
Health Information
Emotional Support
Instrumental Support
Professional Support
Community Support
Care Involvement
change pre- vs. post-treatmentn=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
n=53
Service Obstacle Scale
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Pre-Treatment Post-Treatment Follow-Up
*p=.051
**lower scores denote lower levels of emotional distr ess
n=53
Depression SubscaleBrief Symptom Inventory
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Pre-Treatment Post-Treatment Follow-Up
*p=.0147
n=53
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)
MothersFathersBrothersOther
n = 7n = 4
n = 2
n = 1
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Average rating per session (family participants)
Average rating per session
3.4
3.5
3.6
3.7
3.8
3.9
4
4.1
4.2
4.3
Session
1 2 3 4 5 6 7
Teen with ABI
Family members
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Clinician ratings
Clinician Summary
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Topic
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Topic
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unde
rsta
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appe
aling
balan
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lengt
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pace
adap
table
goals
met
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to te
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Session 1
Session 2
Session 3
Session 4
Session 5
Session 6
Session 7
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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 topT hinkA 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 SupervisorRegistered 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]