Counseling Adult Neurogenic Disordered Patients and Their Families

1. Counseling Adult Neurogenic Disordered Patients and Their Families Scott A. Jackson, M.S., CCC-SLP

2. A “Shout Out” to my Influences • Dr. Sonya Wilt (influenced by Virginia Satir) • Dr. Audrey Holland • Jean Glattke • Dr. Celeste Roseberry-McKibbin

3. Fears of Counseling • “It’s really not in our scope of practice.” • “That should be done by a psychologist.” • “I don’t have enough experience to do it.” • “I never know what to say.” • “We didn’t have very much training in that area is school.” • “I feel like I need to be doing ‘speech’ stuff in therapy…there’ s no time for counseling.” • “It’s non-billable!”

4. Scope of Practice • ASHA’s “Scope of Practice” states that we as SLPs can/should provide counseling for those individuals we see for therapy with communication/swallowing disorders.

5. ASHA Scope of Practice Clinical Services Speech-language pathologists provide clinical services that include the following: • prevention and pre-referral • screening • assessment/evaluation • consultation • diagnosis • treatment, intervention, management • counseling • collaboration • documentation • referral

6. ASHA Scope of Practice Examples of these clinical services include: • counseling individuals, families, coworkers, educators, and other persons in the community regarding acceptance, adaptation, and decision making about communication and swallowing;

7. Why Us as SLPs? • Budget cuts. Many hospital/facilities are cutting back on services including social services, etc… • Many insurances don’t authorize therapy/counseling with a psychologist/social worker unless there is a significant depression associated with it. • Also…people are living longer as a result of better medical care/medical advancements. Therefore, our caseloads should increase! There is expected to be a huge shift in the age statistics of our population with elderly individuals increasing in numbers (the baby boomers).

8. Why Us as SLPs? • Everyone on the interdisciplinary team should be providing counseling to some extent. • Ideally social workers and psychologists are the most specifically trained for it. • How many of us have easy access to one of these? Outside of acute rehab facilities, most patients don’t have easy access.

9. Why Us as SLPs? • MDs often don’t have the time to provide counseling or even education to either the patient and/or family. • PT/OT are focusing on physical difficulties and have such limited time to do that.

10. Why Us as SLPs? Anderson & Marlett (2004) cites several others in their article “Communication in Stroke: The Overlooked Rehabilitation Tool” • Clark (2000) and Pound et al. (1994) found that patients felt that it was the role of doctors and hospitals to provide information, explanation, encouragement, and advice but almost half believed that this need was not being met. • Wellwood et al. stated that over 70% of caregivers had to ask for information.

11. Why Us as SLPs? • It makes sense for us to be the ones to take a counseling role. • When asked why it’s easier for them to get some counseling in Speech Therapy, a patient of mine stated “because you actually listen to me and understand me and take the time. My doctor and physical therapist don’t give me enough time.”

12. Education Vs. Counseling • Both are extremely important. • I feel most of us do a good job in the education part…providing patients and families information regarding the deficit(s). • It’s the counseling aspect that many times gets overlooked or ignored.

13. Research • Clark, Micheal S. (2003) ran a study looking at education and counseling intervention for families after stroke. • Two groups. One control and one given stroke information and sessions with a social worker. • Conclusion: An education and counseling intervention maintained family functioning, and in turn led to improved functional and social patient outcomes.

14. Research • Evans, R.L. et. al. (1988) had two stroke groups with their families. • One received information only and the other received counseling only. • 18 months post stroke, findings showed both groups significantly improved caregiver knowledge and stabilized some aspects of family function better than routine care. • Counseling was consistently more effective than education alone and resulted in better patient adjustment at 1 year.

15. General Ideas/Thoughts • Like all clients we see in the Speech Therapy, we need to make sure to build a rapport with them. • Find a way to “connect” with them. • Reciprocal learning. • Laugh at their jokes!!! • Family is a great topic….so is food! • Don’t be afraid to discuss personal things about yourself!

16. General Ideas/Thoughts Open-Ended Questions • Allow a lot of latitude • Draw a client out • Encourage answers that may be more accurate • They can be time-consuming

17. General Ideas/Thoughts • It’s important to try and get a sense of “what the client/family needs” in terms of counseling/support: • Teacher/education provider • An ear/sounding board • Someone to help them feel calm • Someone to give them encouragement (cheerleader) • Someone to motivate them (military sergeant) *Find the balance as a therapist between providing awareness of deficits and providing hope. • Be flexible!!!!

18. General Ideas/Thoughts • Anderson & Marlett (2004): Professionals debate whether their communication gives stroke survivors and families ‘hope’ and recovery after stroke versus creating over-optimistic expectations of ‘recovery’ and ‘unrealistic expectations’’. • “I can’t predict how far your progress will go.” • Focus on the things that they can do. • Let them discover with time rather than us trying to predict.

19. General Ideas/Thoughts Family and/or Patient in Session? • Most counseling sessions should involve both the patient and family • However, some sessions should involve just the patient. It’s amazing how different he/she acts when around family • Some sessions or time should be spent with just the family too. This is where a student intern comes in handy

20. General Ideas/Thoughts Don’t let people wander • “Speaking of that….” • “That reminds me of something you said earlier” • “Along those lines…” • “That brings up a good point…”

21. General Ideas/Thoughts Facial Expressions • According to Glass (2002), 55% of nonverbal communication is facial • Frowning or looking disapproving really shuts people down • Fight those yawns!!!!!!

22. General Ideas/Thoughts Eye Contact • People generally appreciate direct eye contact • However, this is very cultural; if people are uncomfortable, we should not gaze at them

23. General Ideas/Thoughts Head Nodding • Positive head nodding encourages a person to keep going and say more • However, too much of it can indicate that you are insecure and overeager to be liked

24. General Ideas/Thoughts Body Posture • Leaning backward often conveys negative feelings and disinterest (this may be gender specific though) • Leaning forward indicates interest, respect, and liking • Don’t cross your arms…may indicate disapproval

25. General Ideas/Thoughts Silences • For Americans, this can be uncomfortable • In many cultures, silences are expected • Research shows that silences longer than 5 seconds result in shorter verbalizations from interviewees • Short silences of 5 seconds or less can be helpful, because people are given time to think and are often encouraged to say more

26. General Ideas/Thoughts Summaries • VERY useful for keeping things moving! • At the end of the session, it helps to highlight and review major points • Consider taking detailed notes. You can then refer back to them and give the patients and family the exact words they said. • This makes them feel heard and, often, special—I care enough to write down what they tell me. (Don’t let them get suspicious)

27. General Ideas/Thoughts Touch • This should be used very carefully • Sometimes I will briefly touch someone on the arm, hand, or shoulder to convey sympathy • When used appropriately, this is quite helpful

28. General Ideas/Thoughts Self Disclosure • This is when we reveal something personal about ourselves • We need to keep it short • Often, people feel more comfortable and understood

29. General Ideas/Thoughts Running Out of Time • “I’m so sorry—I have another meeting in 5 minutes. Why don’t we continue during our next appointment so I can hear the rest of what you want to say?” • “I hate to cut this short, but there is another patient waiting. I want to hear more.” • Some people give their business card and email address and encourage further communication that way.

30. DEFENSE MECHANISMS A. Rationalization • Logical but untrue explanation of an attitude or behavior that allows an individual to explain why an expectation has not occurred • Rationalization not only prevents anxiety, it may also protect self-esteem and self-concept. When confronted by success or failure, people tend to attribute achievement to their own qualities and skills while failures are blamed on other people or outside forces.

31. DEFENSE MECHANISMS B. Displacement • Person transfers hostile feelings from the person or problem that caused the hostile feelings onto a “safe” person or object • Rather than express our anger in ways that could lead to negative consequences (like arguing with our boss), we instead express our anger towards a person or object that poses no threat (such as our spouses, children, or pets).

32. DEFENSE MECHANISMS C. Projection • The person shifts responsibility to someone else; feelings or motives that belong to the individual are attributed to another person • For example, if you have a strong dislike for someone, you might instead believe that he or she does not like you.

33. DEFENSE MECHANISMS D. Reaction Formation • People experience emotions that are so shocking or contrary to their previous thoughts that the new feelings are considered unacceptable; individuals develop positive attitudes that are opposed to their new, shocking, real feelings about a subject • An example would be treating someone you strongly dislike in an excessively friendly manner in order to hide your true feelings.

34. DEFENSE MECHANISMS E. Repression • People consciously keep thoughts and feelings under control and out of view of others; they may hold their true feelings inside and even deny them F. Suppression • Like repression, only the person is not conscious of emotions or feelings--these are unconscious

35. Disarming an Angry Person • Compliment the person on something they did right • Disarm them by finding something to agree with • Encourage people to talk openly about why they are angry • Feedback and negotiation • Acknowledge their anger/frustration

36. Change • As we age, we face many changes. This is the case for even healthy individuals. • One of my clients put it this way: • “Part of growing old is letting go of the things that you love.”

37. Change • Now imagine, in addition to growing old, how some also suffer from a medical event, accident, or decline that may results in mild-severe and acute/chronic life-changes. • Some examples include: • Stroke (aphasia; dysarthria; dysphagia) • Dementia (AD; PD) • TBI

38. Commonality • Neurogenic disordered patients all have suffered a loss! • It can be a loss of communication skills, swallowing skills, social activities, memory, identity, roles in the family, etc… • It may be beneficial to include “stages of grief” with your counseling.

39. Stages of Grief The stages are: • Denial: • Example - "I feel fine."; "This can't be happening, not to me!" • Anger: • Example - "Why me? It's not fair!""NO! NO! How can you accept this!" • Bargaining: • Example - "Just let me live to see my children graduate."; "I'll do anything, can't you stretch it out? A few more years." • Depression: • Example - "I'm so sad, why bother with anything?"; "I'm going to die . . . What's the point?" • Acceptance: • Example - "It's going to be OK."; "I can't fight it, I may as well prepare for it."

40. Stages of Grief • DenialAt first, we tend to deny the loss has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.

41. Stages of Grief • AngerThe grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.

42. Stages of Grief • BargainingNow the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"

43. Stages of Grief • DepressionThe person feels numb, although anger and sadness may remain underneath.

44. Depression • Men vs. Women in terms of depression • Men tend to show their depression via anger and anxiety • Women tend to show their depression via sadness and moping

45. Depression • Organic depression vs. depression from loss • Since our neurogenic patients have all suffered a loss of some sort, it is logical to assume that there will be some depression because of that loss. • However, depression (or part of it) may also be a part of changes that occur in the brain as a result of injury (ie., stroke). This is organic depression. • Pt’s may benefit from understanding this.

46. Depression and Meds • Many patients are reluctant to start antidepressants. • I feel it is our job to help them understand how depression may also impact their performance and therapy progress. • Meds may help “clear away the fog”.

47. Stages of Grief • AcceptanceThis is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.

48. Loss of Identity/Loss of Self • Most of the adults we see for therapy have suffered a traumatic event that has caused many changes. • They feel a sense of loss…a loss of identity…a loss of self. • Some of these changes happen rapidly (CVA) and some slowly (PD, AD)

49. Loss of Identity/Loss of Self • The person whom the client once knew is no longer present to him/her. • Areas that help define us may include: • Communication • Memories • Socialization • Family Role • Career/job Role • Hobbies/interests

50. Domains of Self Barbara Shadden, PhD @ Univ. of Ark. *From “Advance…” November 2008 People draw from at least four domains of self to tell their life story: • 1. Biographical • 2. Role-based • 3. Interactional • 4. Cultural