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Tools for sibl ings of chi ldren with ABI
Kathy Gravel, MSW, RSW, AAMFT Clinical Fellow
Breanne Mathers, CLS
Laura Hughson, CYW and Clinical Education Liaison
SibKit Inspiration
Family Perspective
Literature
• Siblings needs and outcomes have largely been overlooked (Sambuco et al., 2008)
• Siblings tend to be isolated from their injured brother or sister and cut off from access to information during acute hospitalization (Sambuco et al. 2008, citing Perlelesz et al., 1999)
• The brain injury sequelae, hospital treatment and rehabilitation result in substantial disruption to family lifestyle and dislocate family roles (Wright et al. 2007, citing Tyerman & Booth, 2001)
Literature
• “A brain injury affects everyone in the family, including brothers and sisters. Siblings often feel abandoned or forgotten as parents spend long hours, days, weeks, and even months at the hospital or rehabilitation hospital… Children of all ages need comfort, time, attention, information, and support, not only during the initial crisis of injury but over time as well”. (Lash, 2013, p. 309)
• Siblings may resent that parental attention has shifted towards the injured child. They also need support, information, guidance, and need to be included in family decisions (Sambuco et al., 2012; Godwin et al., 2016)
Pilot- 5 Diagnoses
1 cavernousmalformation
3 tumours
1 fall
1 MVA
1 AVM
Pilot - 16 Participants
Gender
4 brothers
10 sisters
1 female cousin
1 male cousin
Pre-Test Checklist
What is brain injury
Support for being separated from each other
Communication starters & other conversation
suggestions
Dealing with strong feelings
Behaviour tips & strategies
Explaining ABI to friends
List of websites & books
Other
Pre-Tests
8
4
8 8 8 8 8 7
9 8
10 10 10 9
7
Sibling coping Support in hospital Confidence providesupport
Family 1 Family 2 Family 3 Family 4
Family 5 Family 6 Family 7
Post-Tests – Ranking Resources
8 9
7 6
8 8 8 8 8 9
10
8
10 10 10 10
What is braininjury
Coping in thehospital
Support forbeing separated
Communication
Family 1 Family 2 Family 3 Family 4
Family 5 Family 6 Family 7
Post-Tests – Ranking Resources
7 6
4
7 7 8 8
9 8
9 8 8 8
10 10
Feelings Behaviour Explaining tofriends
Websites &books
Family 1 Family 2 Family 3 Family 4
Family 5 Family 6 Family 7
Post-Tests – Coping & Confidence Families 1-4
8
4 5
7 8 8 8
5 4
7 8 8 8
10
8 9
8
10
Sibling coping Support in hospital Confidence providesupport
Family 1 pre Family 1 post Family 2 pre Family 2 post
Family 3 pre Family 3 post Family 4 pre Family 4 post
Post-Tests – Coping & Confidence Families 5-7
8 8
10 10 9
6
10
8
10 10
7
10
Sibling coping Confidence providing support
Family 5 pre Family 5 post Family 6 pre
Family 6 post Family 7 pre Family 7 post
Post-Tests – Ranking Helpfulness & Recommendation to Other Parents
8 9
8 9 9
10 10 10 9
10
8
10 10 10
Helpfulness of SibKit Recommend to Other Parents
Family 1 Family 2 Family 3 Family 4
Family 5 Family 6 Family 7
SibKit Contents
SibKit – Parts of the Brain
Age appropriate descriptions of each section of the brain by colour and the possible effects of an Acquired Brain Injury
SibKit - Support for Being Separated from their Parent
Make a Schedule
Transitional Objects
Consistency Telephone
Calls
Dos & Don’ts when leaving your child: Suggestions to help siblings cope while parents are away
SibKit - Communication Starters & Other Conversation Suggestions
• Ask questions to gauge understanding & clear up misconceptions
• Encourage your child to have a close family member, friend or 3rd party that they are able to speak freely with without guilt or judgement
• Relay accurate, complete & honest information. Children have active imaginations & may “fill in the blanks” if not told the whole story
• Reassure & give updates no matter how incremental- share & celebrate mini-milestones & achievements
SibKit - Dealing with strong feelings
Feelings
Frustrated
Scared
Guilty
Confused
Embarrassed
Relieved
Sad
Depressed
Happy
Overwhelmed
Nervous
Jealous
SibKit - Behaviour Tips & Strategies
Four Reasons for Behaviour
Social Attention
Escape or Avoidance
Tangibles or Activities
Sensory Stimulation
SibKit - Behaviour Choices
Environmental Controls
Prompts
Praise
Setting Limits
Rewards
SibKit - Explaining ABI to Friends
SibKit - Websites
www.siblingsupport.org
http://kidshealth.org/
Neuroscience for Kids http://faculty.washington.edu/chudler/
http://www.aboutkidshealth.ca/en/justforkids/Pages/default.aspx
Find a “Young Carers Program” in your area
http://www.brainline.org/content/2012/08/helping-children-cope-with-head-injury-in-the-family_pageall.html
SibKit – Anxiety & Stress Management Books
“Anxious Annie: the World’s Greatest Thinker” By Jill Bobula & Katherine Bobula
“Be the Boss of Stress” By Timothy Culbert & Rebecca Kajander
“Is a Worry Worrying You?” By Ferida Wolff & Harriet May Savitz
The entire “Scaredy Squirrel” series by Mélanie Watt is excellent
“The Relaxation & Stress Reduction Workbook for Kids: Help for Children to Cope with Stress, Anxiety & Transitions” by Lawrence Shapiro & Robin Sprague
“Peaceful Piggy Meditation” by Kerry Lee Maclean
SibKit – Anger Management Books
“The ABC’s of Anger: Stories and Activities to Help Children Understand Anger” by Ray Ali, illustrated by Eric Olsen
“Angry Monster Workbook” by Hennie Shore
“Stress Relief for Kids: Taming Your Dragons” by Martha Belknap
“How to Take the Grrrr Out of Anger” by Elizabeth Verdick (also has some excellent books to help curb kicking, biting, teach manners, and some great toddler books)
“I Was So Mad” by Mercer Mayer
“What Are You So Grumpy About?” by Tom Lichtenheld
SibKit – Brain Injury Books
“Elvin the Elephant Who Forgets” by Heather Snyder
“Jessica’s X-Ray” by Pat Zonta
“Young Genius: Brains” by Kate Lennard
“A very terrible thing happened” by Margaret Holmes
SibKit - Other
Future Directions
• The value of the SibKit lies in its implementation, modification, and expansion in the weeks, months and years to come
• We invite others to try the SibKit we have developed as we respond to the needs of brothers and sisters of our clients with Pediatric Acquired Brain Injuries
• We look forward to feedback from colleagues, siblings, caregivers and clients as we continue to improve the SibKit for brothers and sisters of clients who have ABI
Questions & Comments
References
Godwin, E., Gan, C., Lukow, H., Wilder Schaaf, K. & Kreutzer, J.S. (2016). Working with families after traumatic brain injury: The essentials for brain injury professionals. In Academy of Certified Brain Injury Specialists (Eds.), Brain Injury Association of America: Vienna, VA.
Lash, M. (2013). Brain injury: Helping brothers and sisters. Pediatric Nursing, November-December, Vol. 39 (6), 309- 310.
References
Sambuco, M., Brooks, N., Catroppa, C. & Lah, S. (2012). Predictors of long-term sibling behavioural outcome and self-esteem following pediatric traumatic brain injury. Journal of Head Trauma Rehabilitation, Vol. 27 (6), 413-423.
Sambuco, M., Brooks, N., & Lah, S. (2008). Paediatric traumatic brain injury: A review of siblings’ outcome. Brain Injury, 22(1), 7-17.
Wright, S., Roser, J., Smith, S., Gauld, S., Kuipers, P. & Kendall, M. (2007). The brain crew: An evolving support programme for children who have parents or siblings with an acquired brain injury. The Journal of Cognitive Rehabilitation, Fall, 4-12.
Contact Us
Kathy Gravel 416 425 6220 ext. 6401 [email protected]
Breanne Mathers 416-988-6689 [email protected]
Laura Hughson 416 425 6220 ext. 6261
Acknowledgements
Caron Gan
Devyn Weeks
Greg Vanden Kroonenberg
The Clients, Siblings, Parents & Caregivers
