One Scenario:

1. Informing Parents of Their Child’s Hearing LossKris English, Ph.D.University of Akron / NOACOhio, US

2. One Scenario: • Was audiologist in step with parent? • What did parent need right now?

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)

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”

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.”

6. 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.”

7. horror stories Also What Parents Have Told Us...

8. 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

9. Acceptance Depression Bargaining Anger Denial Shock of Loss Parents and Grief: A Chronic State

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Impatient Insecure Lonely Lost Nervous Overwhelmed Panicked Remorseful Responsible Spiteful Tense Vulnerable Weary Withdrawn Worried ...

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…..

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.”

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.

15. What We Know About Shock • Amygdala becomes “emotional sentinel” (Goleman, 1995) • Neocortex not accessible • Simply not possible to learn, remember, understand

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)

17. 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.”

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?”

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.

20. Those tests have got to be wrong. Our tests have been perfected over many years, we know what we are doing.

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)

22. Data Analysis • Rated responses: • Highly technical = 1 • Highly affective = 5 • Inter-rater reliability: r= 0.82

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?

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.

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

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.”

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.”

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

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)

31. Denial Has Purpose • Provides time to gather inner strength • Provides time to gather information • Provides time for “readiness” • Is a legitimate coping strategy

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)

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?

34. #6. Give a BroadTime 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

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.

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 1-3-6 research/reason for urgency • Provide information on: • Parent support groups (strongly expressed need) • Social services • Early intervention

38. #10 Document all info given.

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), 675-687. • Audiologic Counseling Evaluation (ACE) available: • http://gozips.uakron.edu/~ke3/ACE.pdf • Friday poster session for more details

42. Thank you! ke3@uakron.edu