informing parents of their childs hearing loss kris english, ph.d. university of akron / noac ohio,...

Informing Parents of Their Child’s Hearing Loss

Kris English, Ph.D.University of Akron / NOAC

Ohio, US

One Scenario:

Was audiologist in step with parent?

What did parent need right now?

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)

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”

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.”

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.”

Also What Parents Have Told Us...

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

Parents and Grief: A Chronic State

Shock of Loss

Denial

Anger

Bargaining

Depression

Acceptance

“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Impatient Insecure Lonely Lost Nervous Overwhelmed Panicked Remorseful Responsible Spiteful Tense Vulnerable Weary Withdrawn Worried ...

“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…..

#1. Diagnosis should be given by audiologist who administered tests and/or will be managing child’s

aural habilitation

#2. Ensure privacy, adequate time, absolutely no interruptions.

Closed door

Phones, pagers off

Avoid artificial barriers (desks, tables)

Preface: “I have some difficult news.”

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.

What We Know About Shock

Amygdala becomes “emotional sentinel” (Goleman, 1995)

Neocortex not accessible

Simply not possible to learn, remember, understand

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)

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.”

#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?”

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.

Those testshave got tobe wrong.

Our tests have been perfected

over many years, we know

what we are doing.

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)

Data Analysis

Rated responses: Highly technical = 1 Highly affective = 5

Inter-rater reliability: r= 0.82

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)

Parental Reports:Seeming Contradictions??

“Being bombarded with information” (Kroth, 1987)

“Not given enough information”(Martin, George, O’Neal, & Daly, 1987)

Which reality is true?

In comparison:

Those testshave got tobe wrong.

(ClinicalSilence)

It’s just impossible to believe, that youcould be so sure

when he is so young.

#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

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.”

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.”

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

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)

Denial Has Purpose

Provides time to gather inner strength

Provides time to gather information

Provides time for “readiness”

Is a legitimate coping strategy

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)

#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?

#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

#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?”

#8. Immediately Arrange for Priority Follow-Up

Appt.

#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

#10 Document all info given.

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

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

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

Thank you!

ke3@uakron.edu