Giving Parents What They Want, When They Want It

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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
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Amy Lerners masters thesis, Emerson College
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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
isnt 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
didnt give us any reason to be hopeful.

• -Mother of a newly-identified
• deaf infant

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What does it mean to beFamily Centered?
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What is a Family?
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The ideal 1960s Family?
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The Ideal 1970s Family?
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The family of the new millenium?!
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The family of the new millenium?!
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Todays Families
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Defining the Family

• A group of individuals living under one roof and
  usually under one head. -Websters
  Dictionary
• A group of people brought together by marriage
  or birth. -Donnahue Kilburg
• Those who eat at a common table. -Marilyn
  Richmond

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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)

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The Joint Committee on Infant Hearingwww.jcih.org
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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.

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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.

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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.

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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

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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?

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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

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What Parents Have told UsThey Want

• Factual information about hearing loss
• Information about the effects of hearing loss on
  their childs 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

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• 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)

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How the Message is Communicatedis Important

• I would say that you (audiologist) have to
  listen to what the parent is sayingIf 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 cant understand
  what the problem is and making a diagnosis and
  saying this is what you need to do without
  explaining things.
• Sass-Lehrer 2004

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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 childrenI would much rather
  have been given, just inundated with information.
  
• Sass-Lehrer 2004

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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)

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• 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

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• Appearance (60)
• At the time of hearing aid fitting
• concerns about their childs 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

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• 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.

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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 didnt know that with his type of
  hearing loss that was impossible. they got our
  hopes upbe more honest about it
• Sass-Lehrer 2004

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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

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Parent Priorities At Time of Diagnosis(Severe-Pr
ofound 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 sons
  diagnosis were some of the worst days of our
  lives. It was as though someone had died.

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Parent Priorities At Time of Diagnosis(Severe-Pr
ofound Hearing Loss)

• Learning to Listen and Speak
• Understanding the Ear and Hearing
• Shortly after our sons diagnosis we were
  bombarded by two things our emotions and
  grieving process, and the need to find out as
  much information as possible

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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

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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

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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 Implants
• 3. Communication Options
• 4. Realistic Timelines for Developing Speech and
  Language

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Parent Priorities At Time of Diagnosis(Mild-Mode
rate 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

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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

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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

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Mild to ModerateAt 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

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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 dont always be so overly energetic
• Keep up to date on the newest stuff
• Rice Lenihan 2005

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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

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Top 10 Things Parents Want Us to Hear

• with apologies to Dave

Adapted from Roush and Matkin, 2004
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10 Talk to us but listen too

• If youre new at this (and even if youre not)
  theres a tendency to talk too much. Keep
  explanations accurate but simple - and dont be
  afraid of a little silence
• Give time to ask questions and listen between
  the lines

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9 Dont assume any correlation between my
childs 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 dont assume they will grieve because their
  child is deaf (although most do)

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8 Dont assume that because we have some
first-hand experience with hearing loss that its
easier (or more difficult) for us

• some may want to pursue hearing aids or CIs as
  soon as possible
• others may have negative feelings about their own
  (or a family members) experiences, and need more
  time

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7 Counseling needs are on-going and they
change over time

• Its 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)

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6 Dont judge us too harshly based on how we
behave during the first few visits

• Theres 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

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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.

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4 Dont 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.

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3 Help us with our decisions but dont 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!

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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 doesnt all
  need to happen at once)
• Consider parents emotional state apart from
  needs of child.

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1 Give us Hope

• They need to know youre sorry about delivering
  bad news, but theres 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.

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Summing up...
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Infants belong intimately to their families.
Entering into the lives of families as an
outsider is a delicate matter. To do so when
childbirth has brought unexpected outcomes
requires a great deal of self-awareness and
understanding of what is valued and nonintrusive
for families. That understanding can only be
achieved by careful, thoughtful collaboration
with each family. -Kjerland and Kovach
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