Transcript Slide 1

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 -- 19 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
Moderate
Severe
Severe to profound
Profound
11 (21.6%)
16 (31.4%)
13 (25.5%)
8 (15.7%)
3 (5.9%)
Bilateral
Unilateral
49 (89.1%)
6 (10.9%)
FINDINGS:
Child Demographic Data
• Boys = 34 (61.8%); Girls = 21 (38.2%)
• Mean age of ID = 33.53 months (SD =
28.5 months)
• Additional disabilities: 20 (37.7%)
FINDINGS:
Parent Demographic Data
Mode of Communication with the Child
• Fathers
• Mothers
• Oral
74.5%
• Oral
83.3%
• Sign and oral 23.6%
• Sign and oral 14.6%
• Other
• Other
1.8%
2.1%
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 schoolage
– 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 schoolage 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!