Presentation on theme: "Teaching Patient Advocacy: “Communicating with Family & Friends about Your TBI” Helen Mathison, MA/CCC-SLP Allison Carolan, MS/CCC-SLP Hennepin County."— Presentation transcript:
Teaching Patient Advocacy: “Communicating with Family & Friends about Your TBI” Helen Mathison, MA/CCC-SLP Allison Carolan, MS/CCC-SLP Hennepin County Medical Center April 10, 2015
Disclaimers The Great Semantics Debates: Patient versus Person Mild-Complicated vs. Mod/Sev TBI
INSPIRATION Patient Care: 17 years combined experience working with mild-moderate TBI Patient and Family Interviews: 8-10 over 4 year period Focus Groups 2013: TBI Patient Roundtable: 11 Patients with mTBI, 1 family member. 2014: TBI Patient Roundtable: Acute TBI patients discharged to LTAC or Knapp Rehabilitation Center (Acute rehab). 5 Patients, 4 family members Living Well with Brain Injury Support Group
Framework for Successful Patient- Family-Friends Communication
Teach Patient Self Advocacy Skills
Become aware of unique aspects of your brain injury
Learn how to communicate effectively
Make the invisible become visible by engaging family
Learn how to continue to communicate and share
Teach family supportive communication and roles
Benefits of successful family involvement
Precautions to take into account for successful family involvement
Facilitating Healthy Family Involvement
Increasing Family Involvement
Communication techniques linked to poor outcomes Controlling/directive statements“You should join us for the Super Bowl Party. There will only be 15 people this year.” “You know you can’t do that computer project yet.” Criticizing“I don’t know why you started those long walks last week. I don’t understand you.” Using guilt“You should be grateful—I worked so hard to get the groceries and clean the house. Don’t you want to get better?”
Communication techniques linked to poor outcomes Being overprotective of patient“I don’t think you should go on that church trip—what if you get a huge headache and can’t do anything while you’re there? Taking responsibility for patient behaviors or outcomes “I can’t believe I let your headaches get that out of control. I should have reminded you each day & called the clinic.” Ignoring or downplaying symptoms“Let’s not talk about your headaches and fatigue again today. I’m sure it’s not really that bad.”
Communication techniques linked to better outcomes Show empathy for patient’s point of view “I know it’s hard during the holidays to be around so many people all talking at once.” Show concern“You seem really tired today. I’m concerned about you.” Offer choices and alternatives“Should we go shopping this morning or afternoon?” “Do you want to find a quieter restaurant?” Provide reason for advice given“It seems that you have an easier time concentrating when we’re at a quiet place.”
Communication techniques linked to better outcomes Openly discuss brain injury & directly address conflicts about care “This is the 3 rd time you forgot to take your headache medicine. We need to plan so it doesn’t happen again. I have some ideas but first do you have any ideas that will help?” Ask about patient’s experience and develop accurate perceptions of patient’s feelings and abilities “What does it feel like when you feel overwhelmed?” “Now that you’ve been taking scheduled breaks, do you still get overloaded?” Focus positively & realistically on successes “Two months ago you couldn’t even go into Target. Now you can go there when it’s quiet in the morning.” Continue to plan pleasant activities together as a family “Going to that rock concert at Excel will really ramp up your symptoms. Why don’t we go listen to that acoustic set instead?”
Student Issues (Elementary- Secondary)
Common Advocacy and Education Goals for all “Spokes” What are the diagnoses What are the written accommodations What are the medical recommendations and restrictions (and who enforces these) What are the compensation strategies
Real World Problems (And why communication is key) Educators are busy and may forget accommodations. Educators occasionally have pre-injury bias toward a student or a diagnosis (case examples) Educators may not understand the purpose for accommodation and medical providers do not provide this out of respect for privacy. Students do not communicate or self-advocate Parents do not know what questions to ask or what role to take on.
The goal is clear communication. The student is the primary feedback catalyst. It’s important to ask the right questions because most high school students are not excellent at self-advocacy. Therefore, it is crucial to arm the student and parent/family with knowledge, skills, and language for basic self-advocacy at the high school level.
A Conceptual Framework MD gives medical restrictions and accommodations, referrals to therapies. Therapists evaluate and make additional recommendations for accommodations, restrictions, and compensation strategies. This is an ongoing process and recommendations may change over time. Social Worker/ HCMC liason contacts school counselor or 504 coordinator and provides education re: accommodations and restrictions Parents and students encouraged to provide feedback and reminders to school and medical team as necessary re: accommodations, restrictions. School implements and contributes to plan, provides feedback and questions
Advocating to Educators Method: 504 Plan/ Meeting Language: (Above 5 th grade level) o Diagnosis o Restrictions, o Accommodations o Compensation Strategies/ Recommendations With a better comprehension of the diagno ses, the “why” for accommodation should become more clear, and the “buy in” of educators improves.
Advocating to Educators Method: Letter from Medical Team Language: Diagnoses, Restrictions, and Accommodations (rarely compensation recommendations) Limitations: Privacy Laws - Include Liaison contact information for questions
Advocating to Educators Method: Letter from Medical Team Language: Diagnoses, Restrictions, and Accommodations (rarely compensation recommendations) Limitations: Privacy Laws - Include Liaison contact information for questions An OK Letter: To Whom it May Concern: Bobby sustained a mild Traumatic Brain Injury on 3/10/2015. Since that time he has been followed by the Traumatic Brain Injury Team at HCMC. Bobby is restricted from participating in Gym class and Track and Field until re-evaluated and cleared by MD. Bobby has been given the following accommodations for his brain injury: 1)Lecture notes printed ahead of class as available 2)150% time to complete tests 3)Staggered due date option for multiple tests on the same day 4)May pass 5 minutes early from class 5)Allow 5 minute breaks during block scheduled courses
Advocating to Educators Method: Letter from Medical Team Language: Diagnoses, Restrictions, and Accommodations (rarely compensation recommendations) Limitations: Privacy Laws - Include Liaison contact information for questions An OK Letter: To Whom it May Concern: Bobby sustained a mild Traumatic Brain Injury on 3/10/2015. Since that time he has been followed by the Traumatic Brain Injury Team at HCMC. Bobby is restricted from participating in Gym class and Track and Field until re-evaluated and cleared by MD. Bobby has been given the following accommodations for his brain injury: 1)Lecture notes printed ahead of class as available 2)150% time to complete tests 3)Staggered due date option for multiple tests on the same day 4)May pass 5 minutes early from class 5)Allow 5 minute breaks during block scheduled courses A Better Letter (with education) To Whom it May Concern: Bobby sustained a mild Traumatic Brain Injury on 3/10/2015. Since that time he has been followed by the Traumatic Brain Injury Team at HCMC. Due to his ongoing symptoms, Bobby is restricted from participating in Gym class and Track and Field until re-evaluated and cleared by MD. Bobby has been given the following accommodations for his brain injury: 1)Lecture notes printed ahead of class as available to minimize visual shifting and light sensitivity from smart-board 2)150% time to complete tests to allow time for pacing breaks at his desk, and to allow time for him to use compensation techniques for attention impairment (double checking items etc) 3)Staggered due date option for multiple tests on the same day, to allow adequate pacing, encourage use of compensatory study techniques via ample study time, and to promote better sleep, which is imperative for full recovery from TBI 4)May pass 5 minutes early from class to prevent overstimulation and dizziness in busy hallway due to his visual and vestibular deficits secondary to TBI. 5)Allow 5 minute breaks during block scheduled courses to prevent or minimize post concussive headache. If headaches become severe he may need to be excused from classes to rest in nurses office.
The Benefits of a “Better Letter” Students and parents get a copy Students and parents are armed with the appropriate language: Diagnoses, restrictions, accommodations, and “why” Guidance counselors and Social Workers or liaisons are armed with the same language Educator bias is decreased
Self-Advocacy at the College Level College students with brain injury deal with more than just academic difficulties.
College Students and TBI Advocacy: o Student Disability Office- Establish Connections o Medical Team write Letters of Support for Applications and Accommodations.
College Students and TBI Communication with Peers: Arm patients with the correct information and language, practice retrieving the facts and formulating the words. * What types of places increase symptoms after a TBI? * Why can’t they be physically active? * How much rest do they need? * How long might it take before a person with a TBI can resume normal activities? * Why can’t a person with TBI return to work, or when might they be able to work again?
College Students and TBI Roommates and Friends: How Can I Help? I wish my friends were more educated about my condition so that I don’t have to keep explaining it. I wish that my friends would ask me more questions about my injury, treatment and recovery. Ask me directly what they can do to help. Each person is different. Be patient with me and my restrictions. Recovery takes time. Plan activities that we can do together that are quiet and short in duration, and that follow my activity restrictions. It helps to know that others truly understand my condition and the recovery process. Clinicians Can Help
College Students and TBI Further considerations: Almost everyone wants to feel “normal,” especially in College Challenges of new environment, more difficult classes, autonomy College student habits, lifestyle, and identity is not yet well established Lifestyle not yet well established Patients are people and should be treated as a whole, not just as an employee or student. Help patients advocate in social, romantic, and recreational settings too.
CONCLUSION Patients, families, friends are an integral part of, and influence on, the recovery process. Communication is complex, but crucial. Advocacy can happen at multiple levels, and clear understanding of roles is key. Every patient has a right to understand and possess the language to describe his/her unique injury. It is our job as medical providers to teach this information and ensure comprehension.
Nine Things NOT to Say to Someone with a Brain Injury Marie Rowland, PhD, EmpowermentAlly 1.You seem fine to me. 2.Maybe you’re just not trying hard enough (you’re lazy). 3.You’re such a grump! 4.How many times do I have to tell you? 5.Do you have any idea how much I do for you? 6.Your problem is all the medications you take. 7.Let me do that for you. 8.Try to think positively. 9.You’re lucky to be alive.
From Brainline.org: 10 things people with a brain injury would like to hear 1.I'm sorry. How can I help? 2.Please tell me what having a TBI is like. Can you tell me where I can read more about TBI? 3.I don't know how you feel, but you are my friend and I will always be there for you. 4.I admire your willpower. You will get through this. 5.I know I don't understand what it's like, but I will try my hardest to be patient and understanding. 6.Take your time — we are not in a hurry. 7.When are you going grocery shopping, I want to go, too. Or, what yard work can I come do? 8.I don't know what to say but I'm sorry it happened to you. 9.The you that is YOU hasn't changed. You just have a harder time thinking than you used to. 10.I will bring you some delicious healthy brain foods and snacks — and come to sweep and do laundry, but don't worry, I won't stay too long.
Lost & Found: What Brain Injury Survivors Want You to Know Barbara J. Webster, Lash & Associates 1.I need a lot more rest than I used to. I’m not being lazy. 2.My stamina fluctuates, even though I may look good or “all better” on the outside. 3.Brain injury rehabilitation takes a very long time; it is usually measured in years. 4.I am not being difficult if I resist social situations. 5.If there is more than one person talking, I may seem uninterested in the conversation. 6.If we are talking and I tell you that I need to stop, I need to stop NOW! 7.Try to notice the circumstances if a behavior problem arises. 8.Patience is the best gift you can give me. 9.Please listen to me with patience. 10.Please have patience with my memory. 11.Please don’t be condescending or talk to me like I am a child. 12.If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. 13.If I seem “stuck,” my brain may be stuck in the processing of information. 14.You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. 15.If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. 16.If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. 17.We need cheerleaders now, as we start over, just like children do when they are growing up. 18.Don’t confuse Hope for Denial. Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.
References 1.Rosland, A-M. (2009, August). Sharing the Care: The Role of Family in Chronic Illness. Retrieved from 2.Rowland, M. (2013, September). 9 Things NOT to Say to Someone with a Brain Injury. Retrieved from 3.Brainline.org. 10 Things People with a Brain Injury Would Like to Hear.” Retrieved from people-with-a-brain-injury-would-like-to-he.html. 4.Webster, B. (2011, July). Lost & Found: What Brain Injury Survivors Want You to Know. Retrieved from