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Working Together to Improve the Future of Babies with Hearing Loss ­ Part 2

The Early Hearing Loss Detection y g and Intervention Movement Karen Anderson, PhD Denmark August 28, 2008

A Profession in Change:

Past: "Parent-Initiated" model of diagnosis (Luterman 2001) (Luterman,

Parents begin to suspect HL Seek confirmation results may provide relief confirmation,

Present: "Institution-initiated" model of diagnosis

Catches a family completely off guard off-guard Audiologist may be viewed with hostility Will require "enhanced" counseling skills

"The implications of this model are profound."

The shifting role of the audiologist

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·

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Audiologists have traditionally served a primarily diagnostic role with children and their families. The literature has shown that parents of children who have hearing loss issues have rated audiologists as doing a good job at diagnosing and delivering information to them. h However, parents rate audiologists as not p g having met their needs when it comes to the processing of emotions associated with their child's hearing loss challenges.

TEAM THINK ­ Identify the top 5 types of information an audiologist would typically provide at hearing loss confirmation

A. B. C. D. D E. F. G G. H. I. I

Degree of loss Auditory system Amplification Educational options Speech/language Etiology Home ac o e activities es Written information Financial support

J. Emotional support K. Parent co tacts a e t contacts L. Referral sources

TEAM THINK ­ Identify the top 5 types of information a parent would typically want to receive

A. B. C. D. D E. F. G G. H. I. I

Degree of loss Auditory system Amplification Educational options Speech/language Etiology Home ac o e activities es Written information Financial support

J. Emotional support K. Parent contacts L. Referral sources

The findings...Aud Parent

A. B. C. D. D E. F. G G. H. I. I

Degree of loss Auditory system Amplification Educational options Speech/language Etiology Home ac o e activities es Written information Financial support

J. Emotional support K. Parent contacts L. Referral sources

Information Wanted vs. Received by Parents at Hearing Loss Confirmation

Degree of loss Auditory system Amplification Educational options Ed ti l ti Speech/Lang dev Etiology Home activities *Written Information *Financial Support *Emotional Support *Parent Contacts *Referral Sources 0 20 40 60 80 100

Wanted Received

Martin, George, O'Neal, & Daly (1987); *Sweetow & Barrager (1980)

What can the audiologist do to help create a better future for babies with hearing loss?

Focus on the audiologist ­ parent relationship Connect the family with early intervention Connect the family with the support of experienced families Oh yes, and provide accurate fitting and g g pp g ongoing supportive management of the child and family

The diagnostic process

The diagnostic process is the first step on a long journey for most families It is an imprinting process that sets up in th i the parent's mind f t t' i d future expectations for the behavior of audiologists and the many other professionals they will deal with on their journey.

The medical model

Parents retain littl of th i f P t t i little f the information ti provided in a medical model approach and trust issues between the parents and audiologist result. Instead of retaining much of what is said, said they remember unimportant details such as the kind of glasses he or she wore. wore Clinical procedures that separate families from the testing process increase denial because the parents can fantasize about the testing ( (broken machine, questioning audiologist's ,q g g skills, etc.).

The diagnostic process

Ideally the parent's initial interactions with the audiologist

(1)

will have a component where feelings are acknowledged; and

(2) parents are empowered as active participants in the diagnosis, decisionmaking and habilitation.

TEAM THINK

What does `empowered" mean? What can the audiologist do to empower the parent; what would it look like? What do you think an empowered p parent would do different than a p parent who was not empowered? If you were the parent of a 4 week old with hearing loss do you think you would want to be empowered?

The beginning of family-centered counseling

Parent-centered counseling in the diagnostic process begins at this initial contact with the p parent. If the child is not being diagnosed with hearing loss at birth, the parents have likely compiled a list f li t of experiences and observations of their i d b ti f th i child. It is important to let them share anything they feel may be important. They need to be allowed a chance to tell their story

What have they observed? What do they suspect?

The next step: p Involving parents in diagnostics

Active involvement of the parents in the diagnostic process

diminishes th denial di i i h the d i l mechanism and h i d strengthens the bond between the audiologist and the parents. di l i t d th t

Parental satisfaction with f ll P t l ti f ti ith follow up testing t ti of children who failed newborn hearing screening was a function of parents b i i f ti f t being empowered as partners in the process.

The parents are NOT there just to keep you company

Involve the family actively i the I l th f il ti l in th test procedure. p Engage the family as much as possible in eliciting or scoring responses. Have the family participate fully in the diagnosis. diagnosis Ideally, the diagnosis will be made together.

Steps to including parents as co-diagnosticians

Encourage th parent t b at your side E the t to be t id as you introduce the stimuli and look for responses on the ABR or OAE equipment. equipment Once they know in very general terms what you are looking for ask them if they see the waveform decrease as the stimuli intensity is decreased. decreased In corroborative testing in the sound booth have one parent sit with you if possible and enlist his or her help in observing the child s responses. child's

Breaking the news Parents want an audiologist who also can be an empathetic, supportive counselor Parents want unbiased information, particularly concerning the issues of communication and education methodology i ti d d ti th d l Parents predominant need is to meet other parents of children with hearing loss t f hild ith h i l Parents want and need time to process what they th experience and the amount of i d th t f information received at the time of diagnosis

(Luterman & Kurtzer-White 1998) Kurtzer-White,

Ensure privacy adequate time privacy, time, y p absolutely no interruptions.

Closed door Phones, pagers off Avoid artificial barriers (desks, tables) Preface: "I have some difficult news." Ideally, if you have involved the parents in the , y evaluation, they will have realized that their child has a hearing loss

What to say/ What not to say?

"The results of Ava's hearing testing indicate a severe hearing loss in both ears. ears I'm very sorry " sorry." NOT the time for d t il of th ti f details f p procedures, unless parents ask. , p

What We Know About Shock and the Brain

Amygdala becomes "emotional emotional sentinel" (Goleman, 1995) Neocortex not accessible Simply not possible to learn, remember, remember understand

Listen for the parents' understanding parents of the situation

Follow their lead Empower the parents by asking:

"What do you need to know?"

or

"How can I be helpful to you right now?"

·

Let them guide you on how much information to provide.

Resist the temptation to "dump" information on the parent

Provide only information they ask for y y "Will she talk?" "Is it beca se I worked th o gh because o ked through pregnancy?" Prompt: "What would you like to know?" k ?" Periods of silence are okay (really)

Counseling Misstep:

"Communication Mismatch"

Thinking Mind vs. Feeling Mind g g (Goleman, 1995) Request for Information vs. Personal Adjustment Concern We tend to respond with the Thinking p g Mind, regardless of what was said.

Those crucial first minutes Th i l fi t i t

Listen and respond to the parents affect p p (body language, tone of voice). Give the parents a chance to talk about how they feel in an unhurried, caring atmosphere. atmosphere If there is a time limit, tell the family at the t t th outset: "I h have 15 minutes before i t b f

my next appointment, how can I be helpful t h l f l to you?" ?"

Set up another appointment. Do not try p pp y to cover everything in one appointment.

Acknowledge P A k l d Parents' F li ' Feelings

Diagnosis represents "crisis in their lives" No "one way" to act or feel "Unacknowledged feelings do not disappear; they fester" Shock = no emotional reaction

TEAM THINK

There are DOs and DON'Ts for breaking the news to parent that their child has a hearing loss. As a group, what are 5 DON'Ts y can g p, you think of?

Some DON'Ts after a diagnosis DON Ts

Don't fill silence with information p y that the parent is not ready to hear - parents ask each question when they are ready for the answer. Don t Don't be afraid of tears; allow the parent to recognize that it is okay to feel badly badly.

Don't try to h D 't t t cheer up parents of a child with t f hild ith mild hearing loss by saying it could be much worse

Research has shown that parents with mild to moderate losses are more stressed than parents p of children with severe to profound losses These children have potential to lose more hearing; an uncertainty that can be a constant concern to parents Decisions are more ambiguous than they are for deaf children (CI vs HAs, sign vs speech)

No "pep talks"

Don t Don't try to cheer up parents of a child with severe to profound hearing loss by saying that the hearing loss may be corrected with cochlear implants

Feelings....Just Feelings Just Listen

At the time of diagnosis the parent may feel: afraid, inadequate, angry, guilty, vulnerable, confused, etc. Underlying all of these feelings for hearing y g g g parents is a profound feeling of loss The pain of this loss never quite goes away and can/will reemerge ­ for years Listen, validate, don't Listen validate don t judge Parents need not be responsible for how they feel but always and only for how they feel, behave

More DON'T's Pitfalls to avoid when describing hearing loss Do not describe the child as "he's hard of he s hearing, but he's not deaf".

This black and white description can allow grieving parents the `out' of believing that they do not have to take action because their child is not deaf.

(Yes, this happens) Do not use the labels of degrees of hearing loss

The labels mild, moderate, and even moderate-severe minimize the actual impact of the hearing loss on speech perception especially for children in perception, educational settings

When describing hearing loss

Describe the loss using dB levels and simulate g the hearing loss to the parents

Their o e own e pe e ce listening with t e s u ated experience ste g t the simulated hearing loss paired with how they observed their child responding to tones and speech in quiet and noise decrease the probability that they will deny the loss.

Do D NOT spend much time `interpreting' the d h ti `i t ti ' th audiogram ­ experience is a MUCH more effective t l! ff ti tool!

Hearing loss is both invisible and 3 dimensional ­ a 2 dimensional graph does not help most people di i l hd th l t l understand hearing loss well right after diagnosis

Simulation tool

Again....

Do not focus on the audiogram Do not talk about hearing loss in terms of g levels (mild, moderate, etc.) These make sense to audiologists but little sense to parents

Think back, how long did it take YOU to really understand the effect of diminished sense of hearing on speech detection and understanding in typical environments, just from looking at the audiogram?

So how else can you talk about hearing S h l t lk b t h i loss?

The `listening bubble' concept

Hearing is a distance sense Describe the loss in terms of the child having a smaller `listening bubble listening bubble'

The `listening bubble' concept h `l b bbl '

A smaller listening bubble explains why p the child will respond but not others

loud sounds sounds close to the child)

The listening bubble is even smaller in noise Different voices can be easier for the child to detect ­ hild t d t t

bigger listening bubble for Dad than for Mom

Listening bubble

Showing `improvement' of hearing on sound audiogram or `DSLogram' implies that the hearing id h i aids will `fix' the child's hearing and ill `fi ' th hild' h i d that little else is needed on the parent's part Talking b t the li t i b bbl f T lki about th listening bubble focuses on the parent's need to be in closer proximity to the child, helps with understanding child interference of noise on understanding speech Emphasizes the reality that in young children

LANGUAGE IS CAUGHT, NOT CAUGHT TAUGHT

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, who being cannot accept" this news... (Kricos, 2000)

Denial Has Purpose

Provides time to gather inner strength Provides time to gather information f Provides time for "readiness" Is a legitimate coping strategy

Give a Broad Time Frame for Action

Dilemma:

We feel pressure for fast action 1-3-6! 1 3 6! 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

Provide parents with concrete activities while awaiting next appointment

Early Listening Function (ELF) y g ( ) 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 g your baby?"

ELF

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Early Listening Function Parents observe child behavior when introducing contrived listening activities at different distances and in quiet and noise

6 inches, 3 feet 6 feet 10 feet 15+ feet inches feet, feet, feet, 12 Activities:

4 quiet, 4 typical loudness, 4 loud

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Loudness calibration is not critical ­ parent p participation in typical environments is critical Quiet and noise: develop awareness of how g y having the TV always on limits the child's perception of other sounds

Gives the parents something "to do" to feel like they are helping their child Can be a first activity with early intervention Motivating for following through with hearing aids or adjustments after new earmolds Tuning into auditory development over time Involve all caregivers Provides parents with a clear way of describing the effects of hearing loss in typical situations

Other benefits of the ELF

ELF as a Validation Tool

Each activity has a point value do a possible score out of 100 can be obtained Audiologist scores and compares over time Reveals improvements in perception of quiet input or across distance Separate form for parents to complete 1-2 weeks after new amplification is fit May be beneficial to family compliance (Example: Dad's who get involved in `measuring')

ELF Infant & Young Child Amplification Use Checklist Circle 1-5: Agree, No Change, or Disagree My child appears to: 1. Be more aware of my voice 2. 2 Be more aware of environmental sounds 3. Search more readily for the location of my voice 4. 4 Have an increased amount of babbling or talking 5. Have more interest in communicating During ELF listening activities, the size of my child's child s listening bubble: 1. Has improved for quiet sounds voices p q 2. Has improved for typical sounds and voices 3. Has improved for loud sounds and voices p 4. Has improved for listening in background noise

Summary of `take home messages take home'

At all stages it is essential that professionals empower parents and help them process the emotions associated with hearing loss. Involve parents as co diagnosticians for co-diagnosticians children of all ages. Simulations and descriptions using dB levels Si l ti dd i ti i l l and the "listening bubble" are more helpful than labels d di th l b l and audiogram interpretation. i t t ti There are both positive and negative helpgiver responses. Trust that parents have the h h h capacity to manage their lives. Resist the urge to rescue!

Thank you for listening!

[email protected] K LA d @ thli k t www.sifteranderson.com s te a de so co

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