Exploration of Function and Identity after SCI

1. Exploration of Function and Identity after SCI Raheleh Tschoepe MS, OT/L UNC Health Care Inpatient Rehabilitation Unit SCI Team rtschoep@unch.unc.edu 919-966-1626 November 3, 2012

2. Objectives By the end of this session, you will have basic understanding of: Incidence and etiology of SCI in the U.S. SCI injury levels, syndromes and the ASIA Classification System – what do they tell us? How an interdisciplinary therapy team can maximize functional independence How to recognize, prevent and address potential barriers to progress across the continuum of care OT evaluation and treatment procedures, discharge planning and integration into interdisciplinary treatment Function and identity as guides to treatment planning

3. Statistics • Incidence: 12,000 new cases each year • Prevalence: ~265,000 persons in the U.S. living with SCI • Age - 1973-1979: 28.7 years old Since 2005: 40.7 years old • Gender: 80.7 % reported have been male www.nscisc.uab.edu

4. Etiology • MVC: 40.4% • Falls: 27.9% • Violence: 15.0% (gunshot wounds) • Sports: 8.0% • Non-traumatic: 8.0% (disease, infection, congenital disability) • Sports Falls www.nscisc.uab.edu

5. Neurological Levels • Incomplete tetraplegia (39.5%) • Complete paraplegia (22.1%) • Incomplete paraplegia (21.7%) • Complete tetraplegia (16.3%) www.nscisc.uab.edu

6. Length of stay and discharge • Acute care - 24 days • Inpatient Rehab – 37 days (greater for people with complete injuries) • 89.9% discharge to a private residence • 6.2% discharge to nursing homes Is it enough to discharge at a “supervision” level? www.nscisc.uab.edu

7. More than a number… "I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles. “ -Christopher Reeve

8. Exploring Function

9. Occupational Therapy Practice Framework Occupational therapy is: “..the application of an intervention process that facilitates engagement in occupation to support participation in life…” Occupational therapists and occupational therapy assistants: “focus on assisting people to engage in daily life activities that they find meaningful and purposeful.”

10. Exploring Independence

11. OT’s Role • Carolyn Baum defines independence as the ability to take responsibility for one's own role performance, needs and desires. In order to acknowledge the variety of ways individuals accomplish the necessary and desirable tasks in their lives, it is essential to embrace a broad view. • The profession recognizes independence as a state of self-determination. Baum, C. M. (2011). The John Stanley Coulter Memorial Lecture. Fulfilling the promise: Supporting participation in daily life. Archives of Physical Medicine and Rehabilitation, 92(2), 169-175.

12. OT’s Role applied to SCI • Spinal cord injury or disease can lead to changes that are unanticipated, immediate and often permanent. • Impairment or loss in motor, sensory function • Result is a wide range of limitations in activities and participation. Herrmann et al. (2011). The comprehensive ICF core sets for spinal cord injury from the perspective of occupational therapists: a worldwide validation study using the Delphi technique. Spinal Cord, 49, 600-613.

13. OT’s Role in SCI • Problems are direct result of interaction between disease or injury sequelaeand environmental and personal factors (contextual factors). Biopsychoscial model of the International Classification of Functioning, Disability, and Health

14. OT’s Role in SCI ICF component body functions * Temperament and personality functions * Energy and drive functions * Sleep functions * Vestibular functions * Sensory functions related to pain, temperature, other stimuli * Voice functions * Increased/decreased blood pressure * Mobility of joint functions * Control and coordination of voluntary movement

15. OT’s Role in SCI ICF component body structures * Cervical, thoracic and lumbosacral spinal cord * Caudaequina * Spinal nerves * Structure of eyes * Urinary system structure * Structure of UE, LE, trunk * Bones, joints, muscles, skin of entire body * Structure of head and neck * Structure of respiratory and intestinal systems

16. OT’s Role in SCI ICF component activities and participation examples: * Religion and spirituality; socializing; political life * Using telecommunication devices * Changing basic body position * Transferring oneself * Pricking up, grasping, releasing manipulation * Driving * Washing body parts, drying oneself * Sexual relationships * Using household appliances

17. OT’s Role in SCI ICF component environmental factor examples: * Food; drugs * General assistive products and technology for personal use in daily living, education, employment * Design, construction, and building products and technology for entering, exiting and gaining access to facilities * Financial assets * Immediate, extended family and friends * Acquaintances, peers, colleagues, community members

18. Functional Recovery by Level

19. Barriers to Progress Spinal Shock Pressure Ulcers DVT & PE Spasticity – benefit or hindrance? Limited ROM Contractures Neurological Shoulder: common in tetraplegia Heterotopic Ossification (HO) Osteoporosis Orthostatic Hypotension

20. Barriers to Progress • Orthostatic Hypotension • Autonomic Dysreflexia *Bladder Management *Bowel Program * Skin Issues • Respiratory illness • Most common cause of death is resp. failure. • Head Injury • Psychosocial Adjustment

21. OT Evaluation: ICF Prior Level of Function * Body functions/Structures<>Activities<>Participation * Environmental factors, Personal Factors Current level of function * Same as above * Musculoskeletal and neuromuscular assessment * Sensation (light touch, pin prick, proprioception) * Mobility (balance, synergy, coordination, substitution) * Skin integrity, blood pressure, endurance * Psychosocial factors

22. Treatment along thecontinuum of careWorking Together for a Successful Outcome:Interdisciplinary Concepts

23. I/ADL Progression is inextricably linked to PT, RT, SLP, psychology, medicine and nursing concepts: - ADLs at a wheelchair level DME/AE selection Mobility preparation and strategies Transfers to BSC, TTB, shower chair, standard bed, couch, dining room chair Bowel/bladder management (education & technique) Sexuality education Instrumental Activities of Daily Living Client’s ability to direct his/her care SCI Education Interdisciplinary Concepts

24. Progressing ADL’s

25. ADL’s - Progression

26. ADL’s - Progression

27. Bowel and BladderEquipment SelectionDo your homework and advocate!Important considerations:

28. Bladder Management Program type - UMN vs. LMN • Intermittent: bag kits, straight catheters, antibacterial, pre-lubricated • Indwelling: leg bag, Foley bag (aesthetics, modesty) • Catheterization schedule: habits, roles, routines • Keys to success: consistency, hydration, activity, support system Adaptive Equipment • mirrors, inserters, spreaders, holders, clothing/environmental modification Positioning Education

29. Bowel Management Program type - UMN vs. LMN Schedule - habits, roles, routines - consistency, diet, activity, support system DME/Adaptive Equipment - mirrors, inserters, stimulators, environmental modification Positioning - bed vs. bedside commode vs. shower vs. standard toilet Education

30. Sexuality • P-LI-SS-IT model • Permission • Limited Information • Specific Suggestions (OT’s STOP here) • Intensive Therapy • Educate on the facts & provide information on: • adaptation • positioning for security • comfort and trunk control • Refer to physician for potential medical interventions Taylor, B. & Davis, S. (2006). Using the extended PLISSIT model to address sexual healthcare needs. Nov. 22-28; 21(11) 35-40.

31. Sexuality • SCI may result in heightened, decreased, or lack of sensation and perception in various dermatomes. • Encourage patients to: • explore themselves physically and identify these changes, discuss with therapists and physicians when there are questions • communicate changes with their partner and be open to multiple forms of sexual stimulation. • Consider psychosocial history and current issues – refer as appropriate to other disciplines Another ADL: a relearning process – How does the person view their roles, responsibilities and participation?

32. Management of the Neurological Shoulder Coordination of Muscle Synergies SCI results in inability to coordinate isometric, eccentric, and concentric muscle contractions SCI results in inability to control speed and direction As a result, clinical presentation often shows “all or nothing” Upper extremity preservation/protection Betz, Kendra. Contemporary Forums Spinal Cord Injury Conference: Upper Extremity Pain and Injury: Interdisciplinary Approaches for Prevention and Treatment. San Francisco, 2008.

33. Aging & SCI • Considerations for acute SCI in older adults Mental flexibility/adaptability Pre-existing body structure/function issues Support systems Resources/ability to make modifications • Considerations for older adults with chronic SCI Life expectancy with paraplegia – similar to that of able bodied adults; tetraplegia – reduced by 10% Exacerbated musculoskeletal, respiratory, urinary symptoms May benefit from more assistance, home modifications, AE/AD/DME Harvey, L. (2008). Management of Spinal Cord Injuries

34. Applying what we know…“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” ~Maya Angelou

35. HOW do we define function and independence? • ROM • Strength • FIM scores: ADL’s, transfers, mobility • International Classification of Functioning: “positive overall health condition” • AOTA: Living Life to its Fullest CLIENT GOALS “…a state of self determination.”

36. John: 40 year old OT with 15 years of SCI experience. Works 50 hours/week on an inpatient SCI unit. Melanie: 20 year old in roll over MVC 2 weeks ago with resulting T10 ASIA A SCI. WHO defines function and independence?

37. Therapy is… …an interactive, interpersonal experience. It is the therapist’s responsibility and skill to read between the lines Have we taken into account: Purpose, goals, routines, meaning, drive, desires, fears, world view, context, etc?

38. Case Study - Jason • 31 yo male, injured in bike racing accident • IBM employee • Required to d/c from AIR at modified independent level • He blogged his entire rehab journey and continues to blog on a regular basis • The following are some quotes reflecting his rehab experience

39. Lessons from a Rehab Blog Occupational Therapy “Occupational therapy teaches you how to do pretty much anything you need to do to live your life. Lately, whenever the therapists ask me to do something a normal person would do, like open a door or push an elevator button, I say, "It's occupational!". “Speaking of food, my occupational therapist, is going to teach me to make brownies on Friday.  Ghirardelli brownies no less.  Earlier this week, they taught me to make a bed, vacuum a carpet, and do laundry.  All good stuff to know.  All 10 times harder than it is for walkers.”

40. Lessons from a rehab blog OT in context:Purpose/Meaning “Work is going about as well as it could.  I'm still working 3 hours a day, and I think it's getting easier.  I'm still glad I'm doing it.  It makes me feel like I'm accomplishing something.  It's about the only time I feel useful.” “Gus continues to make himself indispensable.  Last weekend, we took my van over to his house to do a little work on it.  I really appreciate that, but it's frustrating to watch him do work that I used to be perfectly capable of doing myself.  Makes me feel useless.”

41. Lessons from a rehab blog Independence gets a whole new meaning “……they say it means that I will eventually be able to regain almost complete independence.  It's hard to imagine right now how I'm going to get to that point since right now, I can't even sit up on my own, but for now I'm willing to trust that it's true.” • “I take solace in the fact that I've met people who have lived in chairs for decades, and they have obviously figured all this stuff out, but I'm still getting a little nervous about whether, and when I'll figure it all out.”

42. Lessons from a rehab blog Reality of discharge, necessity of routine “That knowledge and my short countdown to release has me worried.  There's still a LOT I can't do on my own.  It's hard to imagine I'm going to master all of it in the next three weeks. I'm going to have to use some of those skills to survive in my apartment.  Transferring from my wheelchair into the shower is just one example of a daily activity that requires a tremendous amount of strength and balance, and which has a lot of opportunity for painful failure.  I've only done it once successfully, and the shower in here is much larger, and I had two spotters.”

43. What it all means… • Teamwork & communication through the continuum of care and stages of recovery impacts outcomes • Success is dependent on a good foundation • A good foundation is based on listening. • Bio-psycho-social model indicates all 3 are critical and must all be investigated and integrated • Therapists must facilitate development of a reliable, comfortable and patient-driven routine. Then practice, practice, practice. • We bridge the gap from injury to recovery through training, education, and support…EMPOWERMENT

44. References • Harvey, L. (2008). Management of Spinal Cord Injuries • Consortium for Spinal Cord Medicine. Preserving Upper Limb Function Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals. Paralyzed Veterans Association. 2005. Available for free at: www.pva.org • Lindsey L, Klebine P, Wells MJ. Understanding Spinal Cord Injury and Functional Goals. Birmingham, AL: Office of Research Services, University of Alabama at Birmingham, 2000. • O’Sullivan S, Schmitz T. Physical Rehabilitation: Assessment and Treatment. Philadelphia: F.A. Davis Company, 2001. • Somers, M. Functional Rehabilitation of Spinal Cord Injury. Norwalk, CT: Appleton & Lange, 2002. • Musick, Darrell. Contemporary Forums Spinal Cord Injury Conference: Mobility Progression for Spinal Cord Injury. Las Vegas, 2006. • Betz, Kendra. Contemporary Forums Spinal Cord Injury Conference: Upper Extremity Pain and Injury: Interdisciplinary Approaches for Prevention and Treatment. San Francisco, 2008. • McKinley, W.,Santoa, K., Meade, M., Brooke, K., "Incidence and Outcomes of Spinal Cord Injury Clinical Synromes", The Journal of Spinal Cord Medicine, 30(3): 215-224, January 2007. • Hutchinson, S., Loy, D., Kleiber, D., Dattilo, J., “Leisure as a Coping Resource: Variations in Coping with Traumatic Injury and Illness”, Leisure Sciences, 25: 143-161, 2003. • O’Brian, A., Renwick, R., Yoshida, K., “Leisure participation for individuals living with acquired spinal cord injury”, International Journal of Rehabilitation Research, 31 (3), 2008.

45. References • Outcomes Following Traumatic Spinal Cord Injury: Clinical Practice Guidelines for Health-Care Professionals. Consortium for Spinal Cord Medicine: Clinical Practice Guidelines. July 1999 • Herrmann et al. (2011). The comprehensive ICF core sets for spinal cord injury from the perspective of occupational therapists: a worldwide validation study using the Delphi technique. Spinal Cord, 49, 600-613.

46. Spinal Cord Injury Educational Resources • National Spinal Cord Injury Association (NSCIA): • association that promotes independence, health and well being of individuals with spinal cord injury and disease through a free help-line, an on-line forum, nationwide chapters and support groups. • Website: www.spinalcord.org • Paralyzed Veterans of America (PVA): • offers numerous publications, fact sheets and authoritative clinical guidelines for SCI (in English and Spanish) and supports research by way of its Spinal Cord Research Foundation. • Website: www.pva.org • Spinal Cord Injury Information Network: • Rich source of information on all topics related to SCI including medicine, liffestyle, religion, advocacy & technology • Website: www.spinalcord.uab.edu • Christopher and Dana Reeve Paralysis Resource Center (PRC): • a program created to provide a comprehensive information source for people living with paralysis and their caregivers to promote health, community involvement and quality of life. • Website: www.paralysis.org

47. Spinal Cord Injury Educational Resources • The University of Miami School of Medicine • Offers an easy to use online manual on spinal cord injury health and wellness • Website: http://calder.med.miami.edu.pointis/index.html • The University of Washington School of Medicine: • Maintains a useful website with information on skin care, bowel and bladder management and other topics of concern for people with spinal cord injuries • Website: http://Depts.washington.edu/rehab/ • Craig Hospital: • Located near Denver, specializes in the rehabiliation of SCI and TBI. Federally-supported educational materials are available online to help survivors maintain health and wellness. Emphasis on issues related to aging with a disability • Website: www.craighospital.org/default.asp (click on “spinal cord injury” then “health and wellness”

48. Spinal Cord Injury Educational Resources • North Carolina Office on Disability and Health: • Promotes the health and wellness of people with disability in North Carolina through an integrated program of polocies, programs and research • Website: www.fpg.unc.edu/%7Encodh/index.htm • Shepherd Center: • Key to Independence Workbook • Website: www.shepherd.org • Take Control: • A multi-media guide to SCI • Website: www.pdassoc.com North Carolina Spinal Cord Injury Association - http://www.ncscia.org/