Presentation on theme: "Informing Parents of Their Childs Hearing Loss Kris English, Ph.D. University of Akron / NOAC Ohio, US."— Presentation transcript:
Informing Parents of Their Childs 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 babys 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 IDd 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...
Im 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. Im 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
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 childs 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, weve been testing Marys hearing, and the results indicate a severe hearing loss in both ears. Im 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)
Current work is verifying the integrative functioning of cortical and subcortical areas (especially the amygdala) in the organisms 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 tests have got to be 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)
Parental Reports: Seeming Contradictions?? Being bombarded with information (Kroth, 1987) Not given enough information (Martin, George, ONeal, & Daly, 1987) Which reality is true?
In comparison: Those tests have got to be wrong. (Clinical Silence) Its just impossible to believe, that you could 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 its not life threatening. Youd be surprised the number of kids who have hearing problems.
Counseling Misstep: Reassuring Pep Talks (Clark, 1990) Denies parents concerns Implies anxieties should not exist Only makes professional feel better Parent will feel worse
About Denial Parents who appear to be denying their childs 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 its 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 Dont 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 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), Audiologic Counseling Evaluation (ACE) available: Friday poster session for more details