Counseling Clients with a

Specific Disorder
Presented by:
Margaret Pawlowski
Erin Rutkowsky
Teri Sikri

Speech-Language Pathology & Specific Disorders

As speech-language pathologists, it is our responsibility to
collaborate with other medical professionals and specialists
to provide the highest quality services to our patients.
Within our practice, we are members of patient care teams
for a variety of diagnoses and conditions including:
- Cleft Lip & Palate
- Progressive Neurological Conditions
- Cancer

Counseling Checklist

Putting Everything Together

Education
Emotional Response
Quality of Life
Team Roles & Expectations
Resources & Support

*Discussion
Before we get started,
consider this question...

Have you observed a

speech-language
pathologist providing
counseling in the medical
or school setting?

We will discuss a few diagnoses/conditions

that SLPs may encounter using our
counseling checklist...

Education
Emotional Response
Quality of Life
Team Roles & Expectations
Resources & Support

Cleft Lip & Palate

Education

Majority of cleft lip/palate occurs in families with no

family history
Major categories:

Diagnosis
Education
Prognosis
Management and treatment
Home management
Psychosocial issues

Use proper terminology

Education (cont.)
Checklist of Topics to Cover

Difficulties with feeding and troubleshooting

Demonstration of breast and bottle feeding
Positive (normal) aspects of physical exam
Explain that cleft is not their fault
Provide reassurance that child is not in pain
Review signs and symptoms of illness (i.e., choking)
Arrange follow-up with specialists

Emotional Response
Five stages of adaptation for parents of a child with a
deformity or visual handicap:

1. Initial shock and disbelief

2. Denial
3. Anger
4. Adaptation
5. Acceptance
Identification during prenatal testing vs. after birth
Parental reactions and frustration

Effects on mother vs. father

Quality of Life

Self image in preschool years vs. older school-age years

Tend to feel more alienated, scared, angry, and upset and generally have a
lower self-concept

Working with parents and teachers:

Does not affect the childs intelligence

Many children feel rejected and are rejected by peers
May need special training to handle negative situations

Working with children:

Strategies to handle negative social situations

Develop good social skills
Teach child how to confidently explain the condition

Team Roles & Expectations

Cleft Lip/Palate Team
At minimum:

Surgeon who specializes in cleft surgical management

Speech-language pathologist
Dental professional

Additional members:

Geneticist
Pediatrician
Audiologist
Orthodontist
Nurses
Psychologists
Other professionals as necessary

Resources & Support

Cleft Palate Foundation

Foundation of Smiles

http://www.cleftsmile.org

Cleft Meetup

http://www.cleftline.org

http://www.meetup.com/topics/cleft/

Cleft Kids

http://www.cleftkids.org/resources-for-families.html

Progressive Neurological Conditions:

ALS

Education
Approximately 5,600 people in the U.S. are diagnosed with
ALS each year. The incidence of ALS is two per 100,000
people, and it is estimated that as many as 30,000 Americans
may have the disease at any given time.
(ALS Association, 2016)

- What is ALS?
- How does it compare to other neurological conditions?

Emotional Response
-

Anticipatory Grief:
-

Stages of
-

People with ALS often feel

anticipatory grief. This occurs

Respiratory Distress
(Rivara, Barlascini, Banfi,

their loved ones begin to

experience loss and change
(Model, n.d.).

Tangible loss
Symbolic loss
-

when those who are ill and

Grief

Nicolini, Grecchi, 2016)

Cyclical Process
-

Patient
Family

(Model, n.d.)

I dont understand! Why cant

they just fix it?!

Mini - Case
Study
What stage of grief do you
think each statement
represents?
How might you counsel at
these varying stages of
grief?

We go into the clinic, and they

cant tell us anything!
There is a lot they dont know.
They cant predict what will
happen because it is different
with every patient, but we will be
here every step of the way.
She can still move and they dont
have any proof that its ALS. It
just cant be ALS.

Quality of Life
- Treatment
-

Communication

Swallowing & Dysphagia (Palovcak,

(Fried-Oken, Mooney, & Peters, 2015)

Mancinelli,

Elman, & McCluskey, 2007)

- What about specialty hospitals or

clinics?

Discussion
Consider this...

What do you think the

benefits would be of
having a specialty
hospital or clinic in
terms of collaboration and
counseling for patients
with ALS and their
families?

Quality of Life (continued)

- Multidisciplinary ALS
Hospitals or Clinics
(Traynor, Alexander, Corr, Frost, &
Hardiman, 2003)

Team Roles & Expectations

- Three Principles for Speech-Language Pathologists
(Holland, 2007):
-

1. Our job is to provide and encourage patients and families to

explore their options in terms of levels of care and availability of
therapy.
2. There are neither right nor wrong decisions - there are only
decisions patients and families can live with.
3. Decisions should reflect the values of patients and families, not
those of the clinician.

Discussion
Consider this...

Given the principles

provided by Holland
(2007), what do you
anticipate being the
biggest challenge for you
in counseling patients
with ALS and/or their
family?

Resources & Support

- ALS Association
-

http://www.alsa.org/

- Support Groups
-

http://www.alsa.org/community/support-groups/

- ALS Association: Wisconsin Chapter

-

http://www.alsawi.org/?id=25

Grant Program

Cancer:
Total Laryngectomy

Education
Q: What Happens During a Total Laryngectomy?

Visual demo. of Procedure: Laryngectomy, Surgical Voice

Restoration Medical Animation by Polygon https://www.youtube.
com/watch?v=YgrFF2P2Bhk -Incision, skin pulled up/down, removal
of voicebox, possible lymph nodes, parts of pharynx, cancerous
nodes, epiglottis, and hyoid bone. After - stoma in front of
trachea linked directly to lungs.
1 week hospital stay: recover & learn to breathe through stoma.
Feeding tube (NG) for 5-7 days, then swallowing therapy with SLP
for new ways to swallow.
Surgeons, nurses, & CNAs describe procedural aspects
SLPs address: communication, swallowing, feeding, stoma/post-care,
respiratory status (w/resp. therapist), and support groups

TEP (Transesophageal Puncture & Prosthesis)

Some have a TEP puncture hole in both trach.& espophagus. Then later
prosthetic voicebox inserted into TEP.
Allows air from lungs into esophagus
air expelled by mouth. When air
goes from esoph.to mouth, it vibrates tissues in pharynx
produces
sound that is the new voice. SLP helps with all steps of this
transition (i.e., how to speak with it & care for it). Needs to be
replaced regularly.

Emotional Response

Clients ability to participate in the family or ritualistic

aspect of speaking, sharing information,communicating with
outside world, and possibly eating are forever altered. May lead
to
Depression = a common secondary impairment. Watch for
symptoms and refer if necessary. Might lessen with improved
communication abilities and involvement in support groups
Common to go through stages of grief
Life-altering emotional, communicative, social implications for
both client and his/her family.
Education and support group recommended for both the client and
his/her family, support network, and/or caregivers.
May/may not affect job abilities. Pt. can apply for disability.
Personal stories and videos. Meet with former clients.

Quality of Life
Concerns/Issues Following Total Laryngectomy:

Breathing/Respiratory: Learning how to breathe through,

humidify, and clean stoma
Swallowing & Eating Concerns:
Oral phase = unchanged but pharyngeal phase = disrupted.
Muscles in pharynx are reconstructed differently when they
contract so client can more easily push food into esophagus
Client will not choke b/c trachea closed off to the shared
esophageal/tracheal space, and air is re-routed through
stoma directly to lungs (i.e., has a totally separate path
now).
SLP Rx: tongue base strengthening exercises, eat in upright
position,head/neck reclined slightly if necessary (i.e.,
gravity support).

Team Roles & Expectations

A Team Approach is necessary for achieving the most successful

outcome for the patient and his/her family.
SLPs primarily responsible for issues related to trach.tube
care, swallowing, eating, and speaking rehab.
Pre-operatively:
SLP will work closely with the ENT doctor, surgeon, family,
any other caretakers, and possibly the nurse and CNA
Post-operatively:
SLP will work closely with ENT (at first),respiratory
therapist, primary doctor, nurse, CNA, family, caretakers,
and possibly dietician, PT, OT, or counselor, also.
Regularly monitor client for depression, anxiety, and any
new/unusual symptoms. Be ready to refer for counseling,
psych., OT, or follow-up ENT visits.

Resources & Support

Resources for Clients:

Information on the Laryngectomy procedure, explanation of swallowing

afterward, and general tips: http://www.practicalslpinfo.com/swallowingafter-laryngectomy.html
Easy-to-read explanations of all procedures and issues related to Total
Laryngectomies at http://www.healthline.com/health/laryngectomy
#1. Laryngectomy, Surgical Voice Restoration Medical Animation by Polygon
https://www.youtube.com/watch?v=YgrFF2P2Bhk
#2. After Your Larngectomy https://www.youtube.com/results?
search_query=Laryngectomy
#3. Mr. Grimsinger, His story, after Laryngectomy from PracticalSLPinfo.
com https://www.youtube.com/watch?v=oS2ZDZVgCUM
#4. Total Laryngectomy Education from KU Medical Center https://www.
youtube.com/watch?v=LYrIVn4elQY

Resources & Support (contd):

Support Groups/Organizations for Laryngectomees:

SPOHNC(Support

www.webwhispers.org

www.cancer.org

All the websites and YouTube videos previously mentioned

Check with the clients hospital for local or regional

for Patients with Oral, Head, & Neck Cancer)www.spohnc.org

support groups/mtgs.

Phone calls, emails, or visits from previous patients

Resources & Support

1.

Resources for SLPs:

Gives a succinct summary of every aspect of a total laryngectomy
and duties/roles of the SLP throughout. http://speech-languagepathology-audiology.advanceweb.com/Multimedia/Cover-Story/Pre-OpCounseling-for-Laryngectomy.aspx

2.

http://www.practicalslpinfo.com/swallowing-after-laryngectomy.html along

3.

with general site www.practicalslpinfo.com

Research article that details pre and post-operative client
counseling needs and strategies for the SLP.
http://www.asha.
org/uploadedFiles/asha/publications/cicsd/2006FPreoperativeCounselinginLar
yngectomy.pdf#search=%22An%22

*Discussion
Consider this...

What role will you play as

a speech-language
pathologist regarding
counseling and treating
patients with specific
disorders, such as cleft
lip/palate, progressive
neurological conditions,
or cancer?

*Discussion
Consider this...

With what other team

members will you need to
consult to provide the
highest quality counseling
and treatment for your
patients?
How will team change
depending on your work
setting?

Questions?

References
ALS Association. (2016). Facts you should know. Retrieved from http://als.org/index.php?
page=about_als&sub=facts
Flasher, L.V. & Fogle, P.T. (2012). Counseling Skills for Speech-Language Pathologists and Audiologists (2nd
ed.). New York: Delmar Cengage Learning.
Fried-Oken, M., Mooney, A., & Peters, B. (2015). Supporting communication for patients with neurodegenerative
disease. Neuro Rehabilitation, 37, 69-87.
Kuttenberger, J., Ohmer, J. N., & Polska, E. (2010). Initial counselling for cleft lip and palate: Parents
evaluation, needs and expectations. International journal of oral and maxillofacial surgery, 39(3), 214-220.
KU Medical Center. (2012). Total laryngectomy education. Retrieved from https://www.youtube.com/watch?
v=LYrIVn4elQY
Mayo Clinic. (2016). Diseases and conditions: Amyotrophic lateral sclerosis. Retrieved from http://www.
mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/care-at-mayo-clinic/tests-diagnosis/con20024397

References (continued)
McColl, D., Hooper, A., & Von Berg, S. (2006). Preoperative counseling in laryngectomy. Contemporary Issues
in Communication Sciences and Disorders, 33, 147-151. doi: 1092-5171/06/3302-0147. Retrieved from http://www.
asha.org/uploadedFiles/asha/publications/cicsd/2006FPreoperativeCounselinginLaryngectomy.pdf#search=%22An%22
Model, J. (n.d.). Coping with grief fact sheet. Retrieved from https://www.als.
ca/sites/default/files/files/Coping%2520with%2520Grief.pdf
Palovcak, M., Mancinelli, J. M., Elman, L. B., & McCluskey, L. (2007). Diagnostic and therapeutic methods in
the management of dysphagia in the ALS population: Issues in efficacy for the out-patient setting.
Neurorehabilitation, 22(6), 417-423.
Polygon Medical Animation. (2014). Laryngectomy, surgical voice restoration medical animation by polygon.
Retrieved from https://www.youtube.com/watch?v=YgrFF2P2Bhk
Providence Health Care. (2015). After your larngectomy. Retrieved from https://www.youtube.com/results?
search_query=Laryngectomy
Rivara, M., Barlascini, C., Banfi, P., Nicolini, A., & Grecchi, B. (2016). Management of the patient with
advanced amyotrophic lateral sclerosis: The caregivers opinion. Romanian Journal of Neurology, 15(1), 36-41.

References (continued)
Rosenbek, J.C. & Troche, M.S. (2013). Progressive neurological disease and dysphagia (including parkinsons
disease, multiple sclerosis, amyotrophic lateral sclerosis, myasthenia gravis, post-polio syndrome). In R.
Shaker, P.C. Belafsky, G.N. Postma, & C. Easterling (Eds.), Principles of Deglutition: A Multidisciplinary
Text for Swallowing and its Disorders (395-410). New York: Springer.
Texas Health Care. (2016). Mr. Grimsinger, his story, after laryngectomy. Retrieved from https://www.youtube.
com/watch?v=oS2ZDZVgCUM
Traynor, B.J., Alexander, M., Corr, B., Frost, E., & Hardiman, O. (2003). Effects of a multidisciplinary
amyotrophic lateral sclerosis (ALS) clinic on ALS survival: A population based study, 1996-2000. Journal of
Neurology, Neurosurgery, and Psychiatry, 74, 1258-1261.
University of Iowa Childrens Hospital. (2016). Cleft Palate. Retrieved from
org/MedicalService/Default.aspx?id=229572

http://www.uichildrens.

Young, J. L., O'Riordan, M., Goldstein, J. A., & Robin, N. H. (2001). What information do parents of newborns
with cleft lip, palate, or both want to know?. The Cleft palate-craniofacial journal, 38(1), 55-58.