Hard of Hearing Children in the School Years: Family Needs for Support and Connection Janet R. Jamieson Faculty of Education University of B.C. Brenda Poon Anat Zaidman-Zait Human Early Learning Partnership (HELP) University of B.C. International Federation of the Hard of Hearing July, 2008

Research Support Provided by: UBC Hampton Research Grant BC Early Hearing Program UBC Humanities & Social Sciences

David Luterman The family is a system A change in any one member affects all members (a “deaf family”) How does a child who is hard of hearing affect the family?

Prior Research on Hard of Hearing Children Limited research focused upon experience of hard of hearing children. Retrospective studies with self-report from adolescents and adults (e.g., Stinson & Foster, 2000). Survey and interview studies with adolescents (e.g., Brunnberg, Bostrom, & Berglund, 2007; Israelite, Ower, & Goldstein, 2002). No research involving hard of hearing children in elementary school.

Research Questions Do parents and families of children who are deaf and hard of hearing have particular needs for information and support? If so, do these needs change over time?

How Did We Investigate these Questions? Previous Study in western Canadian SD: –shed light on challenges and coping strategies of children who are hard of hearing –shed light on some challenges and coping strategies of families Current Study in western Canadian city: –Parents described their needs for information and support

Current Study: Who Was Involved? Families whose children (birth yrs, 19 mos) were aided through regional Hearing Clinic

How Did the Families Participate? 1.Questionnaires were developed and sent out (154; 9 undeliverable). 2.Families (55) responded. –0-5 = 7; school-age = 48 –38% response rate 3.Based on responses, focus group questions were developed. 4.Parents (n=7, 8) participated in two focus groups.

Children’s Hearing Status Mild 11 (21.6%) Moderate16 (31.4%) Severe13 (25.5%) Severe to profound8 (15.7%) Profound3 (5.9%) Bilateral49 (89.1%) Unilateral6 (10.9%)

FINDINGS: Child Demographic Data Boys = 34 (61.8%); Girls = 21 (38.2%) Mean age of ID = months (SD = 28.5 months) Additional disabilities: 20 (37.7%)

FINDINGS: Parent Demographic Data Mode of Communication with the Child Mothers Oral74.5% Sign and oral23.6% Other1.8% Fathers Oral83.3% Sign and oral14.6% Other2.1%

Survey: Parent-reported Needs: 1. Information Ongoing assessments Availability of services Effects of hearing loss on social and emotional development

2. Guidance Raising a child with a hearing loss Working with my child on his or her hearing, speech and language abilities Caring for/managing/troubleshooting a hearing aid or a cochlear implant Explaining my child’s condition/needs and how to manage equipment to other people

3. Emotional support Meeting other parents of children with hearing losses Meeting other children with hearing losses Learning strategies to cope with feelings of stress or anxiety

4. Locating services Specialized service providers (e.g., audiologist, teacher) Observation of intervention services

5. Intervention, education, or habilitation program Being a partner in making decisions regarding my child’s program and next steps for my child and my family Learning about the stages and goals of the program Observing my child’s treatment/therapy sessions

6. Professionals’ characteristics Appreciate professionals who listen and respond to parents’ concerns, feelings, ideas, and questions Consider my views as important and valuable Share information and ideas with me in ways that are clear and easy for me to understand

7. Financial assistance primarily related to the child’s hearing aids

FOCUS GROUPS: Intensity Parents: –all children with hearing loss were school- age –were passionate and deeply committed to their children and their families –were resourceful –often did not have much current contact with other families of children with hearing losses

General Overview of Identified Parent and Family Needs Five general themes were identified: –Information –Parenting –Emotional support –Financial support –Education

Information Content needs (“What”): –Services and programs for children, siblings, parents and families –Technology –Parent rights

Information (con’t) Process needs (“How): –often unaware of services or how to access them –one professional providing information about programs and services Usually Audiologist or Hearing Resource Teacher

Information: Parent quote “We need a coordinator, a team, a social worker – just someone who can find that information for you. Someone who can tell you how you can fund something. Maybe there’s organizations out there, we don’t know.”

Parent Support/Emotional Support Mostly only available when children are preschool age Parents often dealing with unresolved grief Emotional support desperately needed for parents, siblings, families of school- age children Often difficult to locate or learn about services

Emotional Support for Children and Families Some children have emotional or psychological needs that intensify with age - often true for children with progressive losses - families often placed “at risk” in these situations, with no specialized mental health resources for support

Parent Quote: Emotional support “… you hit every different milestone that they're getting to. And you realize other things. You know. Okay how am I gonna handle this? You know, I mean it was so hard for me for him to go to high school and to deal with different teachers. So, I think that something, that its a continual.”

Parent Quote: On Audiologists Providing Emotional Support “…we have very highly educated audiologists who are very passionate about their job. We’ve been there 10 years. You know, it’s the same people. They really care. They give 110%. They can’t do what [mental health specialists] do, but we expect them to because there isn’t anybody else to do it. They need to be commended so much for all the help they have given us.”

Funding Families are burdened by the cost of: –Technology –Hearing aids and batteries –Speech therapy –Travelling for hearing-related reasons –Attending conferences, summer programs Sometimes confusion about funding

Parent Quote: Funding “We do put away about $100 a month for hearing aids, and, you know, they have come up, because they’re digital now…so $3500 for two hearing aids…and then there’s other things you can buy, like specialized phones….”

Education Pleased with early intervention –Broad range of communication approaches endorsed –Parents in frequent contact with other parents –Family-centered approach very responsive to family needs for support

Education (con’t) Transition to kindergarten: –Frustration with professional bias –The shift to the child-centered school system usually experienced as abrupt –Confusion around different policies and programs available in different districts –Lack of clarity around parents’ rights or their child’s rights in the school system –Frustrated by regular teachers’ lack of understanding of hearing loss

Education (con’t) Sometimes difficult to get further diagnosis when the child presents with additional problems Parents see itinerant teachers of the deaf and hard of hearing and audiologists as strong, supportive, highly competent allies

Parent Quote: Education “I don’t know how you solve this, but [hard of hearing children]…have to adjust to the classroom, they have to adjust to the teacher, they have to adjust to P.E., you know, and outside. And I would like it different. I would like the classroom to adjust to my kid.”

Some Parent Recommendations Parent groups for school-age parents A range of support options, including individual, parent-to-parent (with follow-up), and family Specialized support for siblings – for sibs and for parents about sibs Parent training in becoming an advocate

More Parent Recommendations One central, clear, easily accessible, parent-tested web site that explains funding and indicates resources Increased funding for hearing-related costs that currently burden families

Is there a “Hard of Hearing Family”? Child’s point of development Particular stage (e.g., transitions) Presence of additional needs in the child Availability and accessibility of resources

The Last Word… “But back then that was, you can almost have too many people involved or you can have people having contradictory information. That was the other thing. You could have people, one person would say do it this way, someone else would say do it this way, someone else says no do it this way. You know a fifth person will come and say, oh no, that, all that's completely wrong. Try this. (L) Okay. You do, it is a completely overwhelming place to be in.”

“You know with all the professionals, you know they seem to have their own opinion, and, you know they took their opinion as absolute, where, you know I mean I took it as an educated opinion. And I was going to do what was right for our child…”

THANK YOU!