1. Informing Parents of Their Child’s Hearing Loss Kris English, Ph. D
Informing Parents of Their Child’s Hearing Loss Kris English, Ph.D. University of Akron / NOAC Ohio, US
Kris English, Ph.D., University of Akron/NOAC

2. One Scenario: Was audiologist in step with parent?
What did parent need right now?
Kris English, Ph.D., University of Akron/NOAC

3. 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)
Kris English, Ph.D., University of Akron/NOAC

4. 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”
Kris English, Ph.D., University of Akron/NOAC

5. 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.”
Kris English, Ph.D., University of Akron/NOAC

6. “The implications of this model are profound.”
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.”
Kris English, Ph.D., University of Akron/NOAC

7. Also What Parents Have Told Us...
horror stories
Kris English, Ph.D., University of Akron/NOAC

8. have any questions for me at this stage?
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
Kris English, Ph.D., University of Akron/NOAC

9. Parents and Grief: A Chronic State
Shock of Loss
Denial
Anger
Bargaining
Depression
Acceptance
Kris English, Ph.D., University of Akron/NOAC

10. “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 ...
Kris English, Ph.D., University of Akron/NOAC

11. “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…..
Kris English, Ph.D., University of Akron/NOAC

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

13. #2. Ensure privacy, adequate time, absolutely no interruptions.
Closed door
Phones, pagers off
Avoid artificial barriers (desks, tables)
Preface: “I have some difficult news.”
Kris English, Ph.D., University of Akron/NOAC

14. 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.
Kris English, Ph.D., University of Akron/NOAC

15. What We Know About Shock
Amygdala becomes “emotional sentinel” (Goleman, 1995)
Neocortex not accessible
Simply not possible to learn, remember, understand
Kris English, Ph.D., University of Akron/NOAC

16. 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)
Kris English, Ph.D., University of Akron/NOAC

17. “Current work is verifying the integrative functioning of cortical and
“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.”
Kris English, Ph.D., University of Akron/NOAC

18. #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?”
Kris English, Ph.D., University of Akron/NOAC

19. 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.
Kris English, Ph.D., University of Akron/NOAC

20. Those tests have got to be wrong. Our tests have been perfected
over many years, we know
what we are doing.
Kris English, Ph.D., University of Akron/NOAC

21. 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)
Kris English, Ph.D., University of Akron/NOAC

22. Data Analysis Rated responses: Inter-rater reliability: r= 0.82
Highly technical = 1
Highly affective = 5
Inter-rater reliability: r= 0.82
Kris English, Ph.D., University of Akron/NOAC

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

24. Parental Reports: Seeming Contradictions??
“Being bombarded with information”
(Kroth, 1987)
“Not given enough information”
(Martin, George, O’Neal, & Daly, 1987)
Which reality is true?
Kris English, Ph.D., University of Akron/NOAC

25. In comparison: Those tests have got to be wrong. (Clinical Silence)
It’s just impossible
to believe, that you
could be so sure
when he is so young.
In comparison:
Kris English, Ph.D., University of Akron/NOAC

26. #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
Kris English, Ph.D., University of Akron/NOAC

27. 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.”
Kris English, Ph.D., University of Akron/NOAC

28. 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.”
Kris English, Ph.D., University of Akron/NOAC

29. 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
Kris English, Ph.D., University of Akron/NOAC

30. 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)
Kris English, Ph.D., University of Akron/NOAC

31. Denial Has Purpose Provides time to gather inner strength
Provides time to gather information
Provides time for “readiness”
Is a legitimate coping strategy
Kris English, Ph.D., University of Akron/NOAC

32. 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)
Kris English, Ph.D., University of Akron/NOAC

33. #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?
Kris English, Ph.D., University of Akron/NOAC

34. #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
Kris English, Ph.D., University of Akron/NOAC

35. #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?”

36. #8. Immediately Arrange for Priority Follow-Up Appt.
Kris English, Ph.D., University of Akron/NOAC

37. #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 research/reason for urgency
Provide information on:
Parent support groups (strongly expressed need)
Social services
Early intervention

38. #10 Document all info given.
Kris English, Ph.D., University of Akron/NOAC

39. 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

40. 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

41. 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),
Audiologic Counseling Evaluation (ACE) available:
Friday poster session for more details
Kris English, Ph.D., University of Akron/NOAC

42. Thank you!