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Transcript of One Scenario:
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Informing Parents of Their Child’s Hearing Loss
Kris English, Ph.D.University of Akron / NOAC
Ohio, US
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One Scenario:
Was audiologist in step with parent?
What did parent need right now?
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What We Have For Guidance:
D. Luterman
Reports from families (not many)
“On-Line” experiences
“Breaking Bad News” Guidelines (incorporating basic counseling and family-centered intervention principles)
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Luterman & Kurtzer-White (1999):
What is best way for parent to be told about baby’s HL?
82%: need information and compassion on the part of the audiologist Kindness, sympathy, calm support Gently and with honesty
18% “There really is no ‘good’ way”
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What would help parents deal with newly ID’d HL?
61% Contact with other parents
46% Unbiased information
26% Support and help with feeling
8% Contact with deaf adults
“Audiologists need to be prepared to deal with the emotional ramifications of the news they deliver.”
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A Critical Juncture: Past: “Parent-Initiated” model of dx
(Luterman, 2001)
Parents begin to suspect HL Seek confirmation, may provide relief
Present: “Institution-initiated” model of dx Catches a family completely off-guard Audiologist may be viewed with hostility Will require “enhanced” counseling skills
“The implications of this model are profound.”
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Also What Parents Have Told Us...
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I’m sorry Mr and Mrs Jones but I am afraid our
results show that Anne has a significant hearing
loss. In other words, she is a little bit deaf. The
cause of this is probably that she was born
prematurely and had very high levels of jaundice.
The loss is probably not going to get better, and we
will need to fit her with some hearing aids. I’m sure
if we get the aids on early she will do very well, and
because we have discovered the hearing loss in
time, she has every chance of developing good
speech and language. Do you
have any questions for me at this stage?
(Green, 1999)
DEAF
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Parents and Grief: A Chronic State
Shock of Loss
Denial
Anger
Bargaining
Depression
Acceptance
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“Feelings just are.” (Luterman)
Alienated Angry Annoyed Anxious Bewildered Bitter Cheated Confused Denial Depressed Disturbed Drained Enraged Fearful Frustrated Guilty Hopeless Impatient Insecure Lonely Lost Nervous Overwhelmed Panicked Remorseful Responsible Spiteful Tense Vulnerable Weary Withdrawn Worried ...
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“Breaking Bad News” Guidelines
English, Kooper, & Bratt (2004)
Taken from medical profession
“You have breast cancer …”
Adapted, not yet thoroughly tested for
audiology/UNHS
But -- a starting point…..
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#1. Diagnosis should be given by audiologist who administered tests and/or will be managing child’s
aural habilitation
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#2. Ensure privacy, adequate time, absolutely no interruptions.
Closed door
Phones, pagers off
Avoid artificial barriers (desks, tables)
Preface: “I have some difficult news.”
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What to say/What not to say?
“As you know, we’ve been testing Mary’s hearing, and the results indicate a severe hearing loss in both ears. I’m very sorry.”
NOT the time for details of procedures, unless parents ask.
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What We Know About Shock
Amygdala becomes “emotional sentinel” (Goleman, 1995)
Neocortex not accessible
Simply not possible to learn, remember, understand
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Neurological Findings: Long known: Reasoning, problem-
solving a function of frontal cortex
New info: the amygdala serves as a gatekeeper to frontal cortex. In times of distress (fear, shock, anger, etc.), amygdala sends out “flight or fight” hormonal reactions, system responds (is not able to access higher levels of processing)
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http://www.nlm.nih.gov/hmd/emotions/frontiers.html
“Current work is verifying the integrative functioning of cortical and subcortical areas (especially the amygdala) in the organism’s response
to primitive emotional experiences such as fear.”
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#3: Listen for parents’ understanding of situation.
Follow their lead
Provide only information they ask for “Will she talk?” “Is it because I worked through pregnancy?”
Prompt: “What would you like to know?”
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Counseling Misstep:
“Communication Mismatch”
Thinking Mind vs. Feeling Mind (Goleman, 1995)
Request for Information vs. Personal Adjustment Concern
We tend to respond with the Thinking Mind, regardless of what was said.
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Those testshave got tobe wrong.
Our tests have been perfected
over many years, we know
what we are doing.
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English et al., 2000
Stimuli: 5 highly affective comments
Content validity
Subjects: 23 AuD (Distance) students
11 completed pre-test: “please respond”
23 completed post-test
Control group (N = 10)
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Data Analysis
Rated responses: Highly technical = 1 Highly affective = 5
Inter-rater reliability: r= 0.82
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1.731.6 1.64
3.78 3.82
0
1
2
3
4
5
Control, Pre-test(N=10)
Control, Post-test (N=10)
Enrolled, Pre-test (N=11)
Enrolled, Postwith Pretest
(N=11)
Enrolled, PostWithout Pretest
(N=12)
Mean
Rati
ng
of
Resp
on
ses (
1=
Very
Tech
nic
al,
5=
Very
Aff
ecti
ve)
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Parental Reports:Seeming Contradictions??
“Being bombarded with information” (Kroth, 1987)
“Not given enough information”(Martin, George, O’Neal, & Daly, 1987)
Which reality is true?
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In comparison:
Those testshave got tobe wrong.
(ClinicalSilence)
It’s just impossible to believe, that youcould be so sure
when he is so young.
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#4: Acknowledge Parents’ Feelings
Dx. represents “crisis in their lives” (Stuart, Moretz, &
Yang, 2000)
No “one way” to act or feel
“Unacknowledged feelings do not disappear; they fester”
(Pipher, 2006)
Shock = no emotional reaction
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What To Say?
“This may take awhile to sink in, and when it does, it could be very upsetting. I hope you will keep talking to me about it.”
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What Not To Say?
“All parents feel the way you are feeling right now.”
“At least it’s not life threatening.”
“You’d be surprised the number of kids who have hearing problems.”
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Counseling Misstep:
Reassuring Pep Talks (Clark, 1990)
Denies parent’s concerns
Implies anxieties should not exist
Only makes professional feel better
Parent will feel worse
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About Denial
“Parents who appear to be denying their child’s HI are often viewed by clinicians as foolish and stubborn - - -
- - - when they should be viewed as loving parents who, for the time being, cannot accept” this news… (Kricos, 2000)
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Denial Has Purpose
Provides time to gather inner strength
Provides time to gather information
Provides time for “readiness”
Is a legitimate coping strategy
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Other Coping Strategies:
Cognitive avoidance (“think about it later”)
Reframing the situation ("At least it’s not as bad as..." )
Seeking support (spiritual, social, or formal support from agencies)
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#5. Respond with empathy, warmth.
Positive, unconditional regard
Perceive parents as able to manage their lives
(assume good will)
Maintain congruence
“Don’t show your feelings” -- good advice?
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#6. Give a Broad Time Frame for Action
Dilemma: We feel pressure for fast action Parents ask for time
Sjoblad, Harrison, & Roush (2001): parents wanted HA fitting to proceed in 1-3 months
Stay sensitive to their preferences, not ours
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#7: Provide parents with concrete activities while
awaiting next appt.
Early Listening Function (ELF) by Karen Anderson
Provide notebook to record ALL behaviors, not just auditory – focus on overall development “How does she tell you she is sleepy?” “What seems to delight or soothe your baby?”
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#8. Immediately Arrange for Priority Follow-Up
Appt.
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#9: At Follow-Up Appointments
“What questions do you have for me?” Review test results (supplement w/ written material)
Review treatment options again
Invite grandparents, other adult supports
Explain 1-3-6 research/reason for urgency
Provide information on: Parent support groups (strongly expressed need) Social services Early intervention
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#10 Document all info given.
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Validation Process of Guidelines 2004: R. Kooper recruited 18 mothers of
recently-identified infants with HL
Mothers rated each guideline: 1 = Essential 2 = Desirable 3 = Uncertain 4 = Not necessary 5 = Should not be done
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Results
Pre-established criteria: All guidelines rated Essential or Desirable by at least 70% of mothers would be included (per standard focus group process)
Results: all guidelines met this criteria
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Next Step: Training Students
English, K., Naeve-Velguth, Rall, E., Uyehara-Isono, J., Pittman, A. (2007). Development of an instrument to evaluate audiologic counseling skills. JAAA, 18(8), 675-687.
Audiologic Counseling Evaluation (ACE) available: http://gozips.uakron.edu/~ke3/ACE.pdf
Friday poster session for more details