Giving Parents What They Want, When They Want It

Jackson Roush, PhD Melody Harrison, PhD

Investing in Family Support, Raleigh, NC

October 19-21, 2008

Division of Speech and Hearing Sciences

University of North Carolina School of Medicine

Chapel Hill, NC

“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 beFamily 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 beFamily 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 Hearingwww.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 MoellerPediatrics 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 informationTime with professionalsTimely 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 lossSensitive to family preferences & Respectful of parent concerns

What Parents Have told UsThey 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 Communicatedis 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%)

MaintenanceParents reported anxiety about:

changing batteriescleaning earmoldsinsertion of earmoldshearing aid retention

What parents want:careful explanation & demonstration providing clear simply written instructionsproviding instructional videosscheduling 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 anyone65% felt more positive regarding appearance4% 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

LaterThe 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 Topic

H M L The Ear and Hearing

H M L Causes of Hearing Loss

H M L Learning to Listen & Speak

H M L Understanding the Audiogram

H M L 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 ProfoundAt 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 Implants3. Communication

Options4. 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 ModerateAt Diagnosis A Few Months Later

1.Causes of Hearing Loss2.Understanding the

Audiogram3.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 Language3. Responsibilities of Early Intervention Agencies4. Legal Rights of Children with Hearing Loss and Opportunities to Interact with Other Parents

Advice for (Entry Level) Providersfrom 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...