developing inclusive audiological practices€¦ · 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 0...

……………………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


Watkin P M, The value of the neonatal hearing screen. Paediatrics and Child Health2010, doi: 10.1016/j.paed.2010.10.007


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]

mailto:[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?



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



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



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.



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



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



Family Days

Christmas party

Easter Egg Hunt

Summer BBQ

Halloween Party

Additional days out: Trips to Zoo, Picnic in park etc.

Quiz Nights



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



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



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!!!!!



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


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


Name Date


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


What can be done…..?


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



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





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



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.





Parents’ earmould course

•Early language communication groups•Integrated music/ auditory awareness sessions



What can be done……………?


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

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