……………………developing inclusive audiological practices
Peter Watkin Consultant in Audiological MedicineDr Margaret Baldwin Consultant Audiological Scientist
Susan Cordwell Parent Support Co-ordinator
0%10%20%30%40%50%60%70%80%90%
100%
0 52 104 156 208 260 312 364
Age in Weeks
Moderate and worse PCHIs with NNHS in placeMild and Unilateral PCHIs with NNHS in place
the way we were…………….
Parents views on the need for Neonatal Hearing Screening(Watkin,P., Beckman,A.,and Baldwin,M.
Br.J.Aud,1995,29,259)
94%
87%
94%
97%
74%
Mild Bilat
Mod. Bilat
Severe Bilat
Prof. Bilat
Unilateral
Number of Unambiguous Respondents = 186/208
Percentage Wanting a Neonatal Hearing Screen
1. Multi-agency management of identified children delayed by >1 year in 33% of cases
2. Less than 10% of parents thought that they had delayed the introduction of management for too long. They were “comfortable” with the current management.
the need for change…………….
Outcomesfrom the UK Hearing Outcome Project
PCHIs confirmed before 9/12 had
• Mean receptive scores improved by 0.76 SD• Mean expressive language improved by 0.5 SD• Reading score improved by 0.4 SD• Communication abilities improved by 0.6 SD
the need for change…………….
Watkin P M, The value of the neonatal hearing screen. Paediatrics and Child Health2010, doi: 10.1016/j.paed.2010.10.007
the need for change…………….
Watkin P M, et al Language ability in children with PCHI: the influence of early management and family participation Paediatrics 2007; 120: e694-701
Outcomesfrom the UK Hearing Outcome Project
Family Participation showed significant positive correlations with speech and language
Health Services
• Consider how the powers in
the Health Act 1999, allowing
pooling of budgets and integration
of commissioning or providing
joint functions between the NHS
and Local Authorities, can best
support children with SEN.
how ……………?????.
Key MessageWorking in partnership with families is particularly
important when a child has additional support needs.
Joint planning that involves parents and carers
and two-way exchange of information about a child is
critical to success.
a. Professional support must be mediated through the family. Familiesmust be at the heart of any decisionmaking process and need informationin order to decide what to do
b. Services need to be Multi-agency
c.Authorities are encouraged to consider whether partnerships withother LEAs could improve the quality & level of service they are able to provide.
d.Some deaf children 0-2 yrs and theirfamilies receive centre based support.However Centres are few and tend to beindependent of statutory agencies.
how ……………?????.
Centre Placed in an Integrated setting within a mainstream nursery
change the positioningof the clinic……………
Grieving
change the model of care……………
Cognitive Response
Denial
DisbeliefSorrow
Emotional Response
Shock
Anger
Guilt
Helplessness
change the model of care……………
Transactional Model of Coping
with Stress
Primary Appraisal
What's at stake?
Secondary Appraisal
What can be done?
Coping Strategies
What can be done……………?
Information based problem solving
National Survey of Support ServicesMeadow Orlans KP et al, American Annals of Deaf 1997; 142, 278-287
0
0.5
1
1.5
2
2.5
3
3.5
4
Teacher
Spouse
Therapist
Other
parents
Deaf
Adults
Doctor/
paed
In-laws
Church
Degree of
Helpfulness
Since
Diagnosis
Closed set
questions
n=404
What’s at stake …………?
Support to reduce negative feelings
What do you
think would
be most
helpful to
parents in
dealing with
newly
identified
Hearing
Loss?
N=75 0%
10%
20%
30%
40%
50%
60%
70%
Teacher Deaf
Contact
Services Support Unbiased
info
Parent
Contact
Identifying hearing loss: parents’ needsLuterman D., Kurtzer-White E. Am J of Aud 1999; 8, 13-18
Guide By Your Side
Guide By Your Side is a Hands & Voices program that embodies our strong values of direct peer connections and networking.It promotes self efficacy and hinders isolation by exploring our common bond, shared experiences, challenges, wisdom and insight.On this page are links to lots of resources and information aboutGuide By Your Side, including materials that are available by password-only access to existing GBYS programs, and start-up teams.Questions? E-mail us at [email protected]
Parent to parent support Support to reduce negative feelings
The employment of Parent Support
Parent Support Co-ordinator
Profoundly deaf daughter Elizabeth born in 1989
1st child
Trouble free pregnancy
Happy, very responsive child
Failed IDT at 9mths
Parent to parent support
Been there………….got the T-Shirt
Referred to Audiology Clinic at 10 mths
Diagnosed with Profound Hearing Loss
Hearing aids fitted 2 weeks later
Connexin 26 …………later confirmation
QUESTIONS ?????????How did this happen?Can she be cured?Will she be normal?Will she speak?What did I do wrong?Do we understand the cause?
Parent to parent support
Been there………….got the T-Shirt
My Role as Parent Support Co-ordinator
To provide emotional support to parents and their families
To provide unbiased information to enable them to make informed choices about their child's management
To actively encourage greater engagement in the services provided, thus leading to a better equity of provision for all families
Parent to parent support
Been there………….got the T-Shirt
Tried and Tested• Parents Own Group (POG)
• Family to Family Contact
• Peer mentoring eg with Cochlear implant candidates
• Coffee Mornings
• Family Days
• Home visits either independently or with other professional
• Parent advocacy
Parent to parent support
Been there………….got the T-Shirt
Emotional Support
Contact within 24 hours of confirmation of diagnosis
Home visit within 48 hours of contact, only at parents wishes.
Importance of Parents choosing level of support.
A way to interact with hard to reach families.
Parent to parent support
Been there………….got the T-Shirt
Assessing Parent Support Requirements
Home Visits
Joint visits with TOD, SLT or Deaf Support Worker
Impression taking at home or nursery
Help with DLA forms
Early Support Materials
Parent to parent support
Been there………….got the T-Shirt
Inclusion Important for Parents
to see we work as a team
Parents can talk about their concerns with PSC while TOD/SLT work with child
Parent to parent support
Been there………….got the T-Shirt
Family Days
Christmas party
Easter Egg Hunt
Summer BBQ
Halloween Party
Additional days out: Trips to Zoo, Picnic in park etc.
Quiz Nights
Parent to parent support
Been there………….got the T-Shirt
Parents Own Group
Setting up problems Tailor to Parents wishes Available to other
Boroughs Deaf Parents On going support for
Parents of school age children
Parent to parent support
Been there………….got the T-Shirt
Cochlear Implant Group
Aimed at families thinking of having their child implanted. To give them a chance to talk to parents of children with implants
To give all parents of implanted children a chance to talk about how their children are doing and to talk about their concerns and share information
To establish a local support network
Parent to parent support
Been there………….got the T-Shirt
How’s it going!
Ask questions Listen to parents views
and comments Admit when its not
working Offer alternative times
and locations But above all, don’t let
anyone give up! EVALUATE!!!!!
Parent to parent support
Been there………….got the T-Shirt
Providing a structured forum for discussing progress –the WXH FamilyQ
1. Adjustment to the fact that our child has a permanent hearing impairment
I’m very upset
about our
child’s hearing
impairment
and find that I
can’t accept it
I feel positive
about our
child’s
deafness and
am not in any
way upset
about it
1 2 3 4 5 6 7 8 9 10
2. Understanding our child’s hearing impairment
I have been told
that our child
has a hearing
impairment but
I don’t
understand it at
all
I understand
our child’s
hearing
impairment,
what it means
and it’s
implications
1 2 3 4 5 6 7 8 9 10
Name Date
Main carer or Family member?
Name Date
Main carer or Family member?
3. Attendance at our child’s appointments
It’s not been
possible to
attend any of
our child’s
appointments
Its always
possible to
attend all of
our child’s
appointments1 2 3 4 5 6 7 8 9 10
4. Hearing Aid Use with our child
It’s just not
been possible
to get our child
to wear the
hearing aids at
all
It’s always
possible to get
our child to
wear the
hearing aids
which are used
throughout the
day
1 2 3 4 5 6 7 8 9 10
Providing a structured forum for discussing progress –the WXH FamilyQ
Name Date
Main carer or Family member?
5. Communication with our child
There is no
agreed
communication
method for our
child and
actually there is
no real
communication
between us
An agreed
communicatio
n method is
used with our
child and we
enjoy
communicatin
g with each
other
1 2 3 4 5 6 7 8 9 10
Providing a structured forum for discussing progress –the WXH FamilyQ
What can be done…..?
Information based problem solving
audiology testing and hearing aid care are based at the Centre and undertaken in joint multi-disciplinary clinics with setting of Individual Family Plans in these sessions
Personal Hearing Record
What can be done…..?
Information based problem solving
Audiological/ Medical information is
recorded in “Yellow Book” for later
discussion in the home with the family by the
Key Worker/ ToD
Structured Family Information Courses
Enable parents:
to make informed choices
to understand about deafness, language development and educational issues
to meet each other
What can be done…..?
Information based problem solving
What can be done…..?
Information based problem solving
Audiology (Me + him) Anatomy, how do we hear, Causes of deafnessHow we assess hearingHearing aids
Communication(SALT and ToD)
Cochlear implants Deaf awareness (Deaf Role Models)
Educational options(ToD)
Environmental aids(Social Services)
Challenges tothis sort of information
different learning styles
many have no experience of formal learning
different information needs
equity of engagement
What can be done…..?
Information based problem solving
Family SignFor all family members and friends. A pre-level one class aimed at beginners and rotated to enable new people to join at any time.
BSL For any parents who wish to learn BSL and gain a 1 qualification.
What can be done…..?
Information based problem solving
What can be done…..?
Information based problem solving
Parents’ earmould course
•Early language communication groups•Integrated music/ auditory awareness sessions
What can be done…..?
Information based problem solving
What can be done……………?
Information based problem solving
But the greatest learning is often achieved by
parents learning from other parents in an
informal waythis sort of information
Family friendly environment non clinical environmentFamilies always see the same multi-agency teamAlways have ToD present at appointmentMulti-agency input to IDPs
Parents like having all their appointments at the same facility
Parent support run from the Centre and able to input to inclusive care
Able to combine visits eg with FOG
Benefits of making the Audiology Clinic Inclusive
ХProviding care in a satellite clinic - clinicians have to bring records and stock and computers are not networked – stand alone PC for aid programming
ХClosed for part of school holidays – hearing aid repairs need to continue over these periods
ХWith delegated budgets and no joint ownership multi-agency funding continues to be problematic
ХWith low incidence condition, networking across boroughs/ districts is necessary for sustainability
ХNo structured confirmation of benefit
Challenges of making the Audiology Clinic Inclusive