Download Family's Conf Raleigh

Giving Parents What They Want,
When They Want It
Jackson Roush, PhD
Melody Harrison, PhD
Division of Speech and Hearing Sciences
University of North Carolina School of Medicine
Chapel Hill, NC
Investing in Family Support, Raleigh, NC
October 19-21, 2008
“I think we left that day with no reason to be
hopeful. There was a lot he could have told us
or given us. He could have said to us that ‘deaf
isn’t what deaf what used to be, because with
hearing aids being what they are, kids can do a
lot with their residual hearing.’ He really didn’t
give us any reason to be hopeful.”
-Mother of a newly-identified
deaf infant
What does it mean to be
Family Centered?
What is a Family?
The ideal 1960’s Family?
The Ideal 1970’s Family?
The family of the new millenium?!
The family of the new millenium?!
Today’s Families
Defining the Family
“A group of individuals living under one
roof and usually under one head.”
-Webster’s Dictionary
 “A group of people brought together by
marriage or birth.”
-Donnahue Kilburg
 “Those who eat at a common table.”
-Marilyn Richmond

What does it mean to be
Family Centered?




Role of the family is recognized and
respected
Family members are supported in their
natural care-giving and decision-making roles
Parents and professionals are seen as
equals.
Family and professional agendas are
interwoven and coordinated.
Brewer (1989)
The Joint Committee on Infant Hearing
www.jcih.org
JCIH 2007: Early Intervention
Families of infants with all degrees of HL should
be offered Early Intervention.
 The recognized point of entry for EI for infants
with a confirmed HL should be linked to EHDI,
and be provided by professionals with expertise
in HL, including educators of the deaf and
speech language professionals.
 Both home-based and center-based options
should be offered as appropriate interventions.

JCIH 2007:
Options and Decisions

Families should be made aware of all
communication options and all available
hearing technologies.

Family choice should guide the decision
making process.
JCIH 2007: Communication

Information at all stages of the EHDI process should
be communicated to the family in a culturally
sensitive and understandable manner and format.
Family Involvement: How Important is It?

Factors Predicting Language Outcomes
– Among factors such as degree of hearing loss, age of
enrollment in early intervention, nonverbal intelligence, and
family involvement.

Two factors predicted language, vocabulary, and
verbal reasoning skills at age 5.
Mary Pat Moeller
Pediatrics 106, 3 2000
The Two Most Important Factors
Age at enrollment in EI &
 Family involvement


Family involvement accounted explained
most of the variance

How do we facilitate Family Involvement?
Fostering Family Involvement

Luterman & Kurtzer-White (1999)
The need for contact with other parents
The need for unbiased information
Time with professionals
Timely follow-up appointments

Cohen and Jones (2002)
Professionals who are honest and easy to understand

Meadow-Orlans, Mertens,Sass-Lehrer (2003)
Professionals knowledgeable about hearing loss
Sensitive to family preferences &
Respectful of parent concerns
What Parents Have told Us
They Want
Factual information about hearing loss;
 Information about the effects of hearing loss on
their child’s development;
 A better understanding of the emotional impact of
the diagnosis of hearing loss by professionals;
 Professionals who will spend time with them to
listen and answer questions;

Parents relating their initial experiences with
hearing aid fitting, repeatedly stated that
audiologists need to be more compassionate
and sensitive to parents’ feelings.
Sjoblad, Roush, Harrison, & McWilliam (2001)
In relating their experiences with early
interventionists parents indicated they were
pleased with the early interventionists even when
they expressed disappointment or disagreed with
the services provided.
Harrison, Dannhardt, & Roush (1996)
How the Message is Communicated
is Important
“ I would say that you (audiologist) have to listen to
what the parent is saying…If you are going to be the
bearer of bad news, it is important how you deliver that
information…. You can make or break that
experience.”
“Be willing to listen to them [parents] and what their
concerns are. And to try to help the parent become
better informed and becoming more involved instead
of just assuming they can’t understand what the
problem is and making a diagnosis and saying this is
what you need to do without explaining things.
Sass-Lehrer 2004
What the Message Conveys
is Important
“I think when your child is first diagnosed, you feel like
all of the control has been ripped out of your
hands….the most important thing seems to be to give
some element of control back to the parent and also
the children…I would much rather have been given,
just inundated with information.
Sass-Lehrer 2004
Sjoblad, Harrison, Roush, & McWilliam (2001).
Parents’ reactions and recommendations following
diagnosis and hearing aid fitting. Ear & Hearing

Concerns at Hearing Aid Fitting
– Hearing Aid Maintenance (73%)
– Appearance (60%)
– Benefits of Amplification (65%)
Maintenance
Parents reported anxiety about:
changing batteries
cleaning earmolds
insertion of earmolds
hearing aid retention
What parents want:
careful explanation & demonstration
providing clear simply written instructions
providing instructional videos
scheduling a follow-up appointment in < 2 weeks
Appearance (60%)
At the time of hearing aid fitting
concerns about their child’s acceptance
anxiety about reaction of family & friends
Later
Very few reports of negative reactions to hearing
aids by anyone
65% felt more positive regarding appearance
4% less positive
26% reported no change
Benefit of Amplification (65%)
Around the time of hearing aid fitting
Parents questioned the degree to which hearing
aids benefited their child.
12% reported benefits had been consistent with
expectations
Later
The percent reporting their expectations had been
met rose to 25%.
Parent Comments Regarding Hearing Aid Benefit
“Tell us it could take some time for any benefits to show up and
encourage them (other parents) to work with their child
continuously. Emphasize that even with the most advanced
technology, use of hearing aids is a great deal of work.”
“Over time you will see that the hearing aids are really helping”
Sjoblad et al 2001
“They were saying, well if he wears these he is going to be
picking up speech left and right. And well, we didn’t know that
with his type of hearing loss that was impossible. …they got our
hopes up…be more honest about it”
Sass-Lehrer 2004
Information for Families with Young Deaf and
Hard of Hearing Children: Parent Priorities
(Harrison and Roush, 2001)
Priority
H
M L
H
M L
H
M L
H
M L
H
M L
Topic
The Ear and Hearing
Causes of Hearing Loss
Learning to Listen & Speak
Understanding the Audiogram
Types of Hearing Aids
Parent Priorities: At Time of Diagnosis
(Severe-Profound Hearing Loss

1. Causes of Hearing Loss
“All parents grieve and feel guilty, wonder what they did
wrong, and even feel guilty about feeling guilty.”

2. Coping with Emotional Aspects of Hearing
Loss
“The day and many days and weeks after our son’s
diagnosis were some of the worst days of our lives. It
was as though someone had died.”
Parent Priorities: At Time of Diagnosis
(Severe-Profound Hearing Loss)
 Learning

to Listen and Speak
Understanding the Ear and Hearing
“Shortly after our son’s diagnosis we were
bombarded by two things: our emotions and
grieving process, and the need to find out as
much information as possible”
Parent Priorities: A Few Months Later
(Severe-Profound Hearing Loss)
 1.
Learning to Listen and Speak
 2. Cochlear Implants
“Gather as much information as you can, now and for
the future”
Parent Priorities: A Few Months Later
(Severe-Profound Hearing Loss)
 Communication Options
“Choose the communication option that is best for your
child and your family, not what everyone else thinks
you should do.”

Realistic Timelines for Developing Speech and
Language
“Please be realistic in describing benefits and let us know
what the range of outcomes might be”
Severe to Profound
At Diagnosis
A Few Months Later
1.Causes of Hearing
Loss
2.Coping with
Emotional Aspects
of Hearing Loss
3.Learning to Listen
and Speak
4.Understanding the
Ear and Hearing
1. Learning to Listen
and Speak
2. Cochlear Implants
3. Communication
Options
4. Realistic Timelines
for Developing
Speech and
Language
Parent Priorities: At Time of Diagnosis
(Mild-Moderate Hearing Loss)
Causes of Hearing Loss
 Understanding the Audiogram
 Learning to Listen and Speak / Understanding
the Ear and Hearing
 Coping with Emotional Aspects /
Communication Options

Parent Priorities: A Few Months Later
(Mild-Moderate Hearing Loss)
Learning to Listen and Speak
 Realistic Timelines for Developing Speech
and Language
 Responsibilities of Early Intervention
Agencies
 Legal Rights of Children with Hearing Loss

Parent Priorities: A Few Months Later
(Mild-Moderate Hearing Loss)

Opportunities to Interact with Other Parents
“There are other families out there that can and will
support you and your decisions without making
judgments. Find us.”
“Speak to other parents, they will help you heal”
Mild to Moderate
At Diagnosis
A Few Months Later
1.Causes of Hearing Loss
2.Understanding the
Audiogram
3.Learning to Listen and
Speak and Understanding
the Ear and Hearing
4.Coping with Emotional
Aspects and
Communication Options
1. Learning to Listen and
Speak
2. Realistic Timelines for
Developing Speech
and Language
3. Responsibilities of
Early Intervention
Agencies
4. Legal Rights of Children
with Hearing Loss and
Opportunities to Interact
with Other Parents
Advice for (Entry Level) Providers
from Families
Form a relationship with the family
 Include other children in the family
 Be an “intuitive listener”
 Provide information regarding typical
development as well as hearing loss
 Please don’t always be so overly
energetic
 Keep up to date on the newest “stuff”

Rice & Lenihan 2005
Listening is the Recurring Theme
"Many a man would rather you heard his story than
granted his request."
Phillip Stanhope, Earl of Chesterfield
"I remind myself every morning: Nothing I say this day
will teach me anything. So if I'm going to learn, I must
do it by listening."
Larry King
Top 10 Things Parents
Want Us to Hear

with apologies to Dave…
Adapted from Roush and Matkin, 2004
#10 “Talk to us…
but listen too”
If you’re new at this (and even if you’re
not) there’s a tendency to talk too much.
Keep explanations accurate but simple and don’t be afraid of a little silence
 Give time to ask questions – and listen
“between the lines”

#9 “Don’t assume any correlation
between my child’s degree of hearing
loss and my reaction or acceptance”
Parents do not necessarily have an
easier time with acceptance because
their child is “hard of hearing.”
 And don’t assume they will grieve
because their child is deaf (although
most do…)

#8 “Don’t assume that because we
have some first-hand experience with
hearing loss that it’s easier (or more
difficult) for us”
some may want to pursue hearing aids
or CI’s as soon as possible
 others may have negative feelings
about their own (or a family member’s)
experiences, and need more time

#7 “Counseling” needs are on-going
and they change over time

It’s not over after the first few visits
– e.g. parents may be willing to use h.a.’s
early on but later, when they see child
respond to sound, want to discontinue h.a.
use (importance of demonstrating the HL)
#6 “Don’t judge us too harshly based
on how we behave during the first
few visits”




There’s a tendency to “classify” families
(difficult, easy, responsible, “in denial” etc)
All families are different (and there are often
differing views/attitudes within a family)
Some of the most “difficult” families early
change over time
They may even become great advocates, for
their own kids and others
#5 “Help us connect with other
families”


Parents want and need the support of other
parents.
Many families report an emotional “turning
point” when they connect with a supportive
group of other parents.
#4 “Don’t forget this is affecting our
whole family”


Professionals should consider the impact of
hearing loss on the entire family.
Parents are particularly appreciative when
professionals seek creative ways to
encourage the participation of all family
members, rather than designating a given
individual, usually the mother, as the family
expert and decision maker.
#3 “Help us with our decisions but
don’t make them for us”

Families want flexibility in methodology
and placement decisions.

Parents want to know all the options but most
want to make their own decisions.
They want support and encouragement for
the decisions they make.
And they want to be allowed to change their
minds!


#2 “Remember this is a time of stress
and emotional upheaval”
Provide facts and information but
consider the affective domain; a sincere
caring attitude is noticed and
appreciated
 Timing and pacing are critical! (it
doesn’t all need to happen at once)
 Consider parents’ emotional state apart
from needs of child.

#1 Give us Hope
They need to know you’re sorry about
delivering bad news, but there’s hope
 Much can and will be done
 Their child can have a full and satisfying
life – albeit a different one than they had
planned on.

Summing up...