Giving Parents What They Want, When They Want It Jackson Roush, PhDMelody 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

Amy Lerners masters thesis, Emerson College

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

What does it mean to be Family Centered?

What is a Family?

The ideal 1960s Family?

The Ideal 1970s Family?

The family of the new millenium?!

Todays Families

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

What does it mean to be Family Centered? l Role of the family is recognized and respected l Family members are supported in their natural care-giving and decision-making roles l Parents and professionals are seen as equals. l Family and professional agendas are interwoven and coordinated. Brewer (1989)

The Joint Committee on Infant Hearing

JCIH 2007: Early Intervention l Families of infants with all degrees of HL should be offered Early Intervention. l 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. l Both home-based and center-based options should be offered as appropriate interventions.

JCIH 2007: Options and Decisions l Families should be made aware of all communication options and all available hearing technologies. l Family choice should guide the decision making process.

JCIH 2007: Communication l 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? l Factors Predicting Language Outcomes –Among factors such as degree of hearing loss, age of enrollment in early intervention, nonverbal intelligence, and family involvement. l Two factors predicted language, vocabulary, and verbal reasoning skills at age 5. Mary Pat Moeller Pediatrics 106,

The Two Most Important Factors l Age at enrollment in EI & l Family involvement l Family involvement accounted explained most of the variance l How do we facilitate Family Involvement?

Fostering Family Involvement l Luterman & Kurtzer-White (1999) The need for contact with other parents The need for unbiased information Time with professionals Timely follow-up appointments l Cohen and Jones (2002) Professionals who are honest and easy to understand l 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 l Factual information about hearing loss; l Information about the effects of hearing loss on their childs development; l A better understanding of the emotional impact of the diagnosis of hearing loss by professionals; l 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 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

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 l 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 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

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 didnt 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 HML The Ear and Hearing HML Causes of Hearing Loss HML Learning to Listen & Speak HML Understanding the Audiogram HML Types of Hearing Aids

Parent Priorities: At Time of Diagnosis (Severe-Profound Hearing Loss l 1.Causes of Hearing Loss All parents grieve and feel guilty, wonder what they did wrong, and even feel guilty about feeling guilty. l 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.

Parent Priorities: At Time of Diagnosis (Severe-Profound Hearing Loss) l Learning to Listen and Speak l 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

Parent Priorities: A Few Months Later ( Severe-Profound Hearing Loss ) l 1. Learning to Listen and Speak l 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) l Communication Options Choose the communication option that is best for your child and your family, not what everyone else thinks you should do. l 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 DiagnosisA 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) l Causes of Hearing Loss l Understanding the Audiogram l Learning to Listen and Speak / Understanding the Ear and Hearing l Coping with Emotional Aspects / Communication Options

Parent Priorities: A Few Months Later (Mild-Moderate Hearing Loss) l Learning to Listen and Speak l Realistic Timelines for Developing Speech and Language l Responsibilities of Early Intervention Agencies l Legal Rights of Children with Hearing Loss

Parent Priorities: A Few Months Later (Mild-Moderate Hearing Loss) l 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 DiagnosisA 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 l Form a relationship with the family l Include other children in the family l Be an intuitive listener l Provide information regarding typical development as well as hearing loss l Please dont always be so overly energetic l 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 l with apologies to Dave… Adapte d from Roush and Matkin, 2004

#10 Talk to us… but listen too l 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 l Give time to ask questions – and listen between the lines

#9 Dont assume any correlation between my childs degree of hearing loss and my reaction or acceptance l Parents do not necessarily have an easier time with acceptance because their child is hard of hearing. l And dont assume they will grieve because their child is deaf (although most do…)

#8 Dont assume that because we have some first-hand experience with hearing loss that its easier (or more difficult) for us l some may want to pursue hearing aids or CIs as soon as possible l others may have negative feelings about their own (or a family members) experiences, and need more time

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

#6 Dont judge us too harshly based on how we behave during the first few visits l Theres a tendency to classify families (difficult, easy, responsible, in denial etc) l All families are different (and there are often differing views/attitudes within a family) l Some of the most difficult families early change over time l They may even become great advocates, for their own kids and others

#5 Help us connect with other families l Parents want and need the support of other parents. l Many families report an emotional turning point when they connect with a supportive group of other parents.

#4 Dont forget this is affecting our whole family l Professionals should consider the impact of hearing loss on the entire family. l 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 dont make them for us l Families want flexibility in methodology and placement decisions. l Parents want to know all the options but most want to make their own decisions. l They want support and encouragement for the decisions they make. l And they want to be allowed to change their minds!

#2 Remember this is a time of stress and emotional upheaval l Provide facts and information but consider the affective domain; a sincere caring attitude is noticed and appreciated l Timing and pacing are critical! (it doesnt all need to happen at once) l Consider parents emotional state apart from needs of child.

#1 Give us Hope l They need to know youre sorry about delivering bad news, but theres hope l Much can and will be done l Their child can have a full and satisfying life – albeit a different one than they had planned on.

Summing up...

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