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Informing Parents of Their Child s Hearing Loss Kris English, Ph.D. University of Akron

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). Luterma

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Informing Parents of Their Child s Hearing Loss Kris English, Ph.D. University of Akron

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    1. Informing Parents of Their Child’s Hearing Loss Kris English, Ph.D. University of Akron / NOAC Ohio, 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. Also What Parents Have Told Us...

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Impatient Insecure Lonely Lost Nervous Overwhelmed Panicked Remorseful Responsible Spiteful Tense Vulnerable Weary Withdrawn Worried ...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

    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.

    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:

    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 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

    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

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