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Byla e A U n i
University of Pretoria etd, Van der Spuy T (2006)
Bylae A
193
University of Pretoria etd, Van der Spuy T (2006)
194
University of Pretoria etd, Van der Spuy T (2006)
195
University of Pretoria etd, Van der Spuy T (2006)
196
University of Pretoria etd, Van der Spuy T (2006)
Byla e B
AANPASSING VAN VRAE IN VRAELYS GEBASSEER OP
RESULTATE VAN DIE VOORSTUDIE
(Die Eng else vra elys is ook d iensooreenkom stig g ewysig en a a ng ep a s)
AFDELING A
VRAE INGESLUIT IN DIE HOOFSTUDIE
VRAE INGESLUIT IN DIE VOORSTUDIE
A1. Wa t is d ie g esla g va n u kind ?
A1. Wa t is d ie g esla g va n jo u kind m et ‘ n
g ehoorverlies?
A2. Wa t is u verhoud ing tot u kind m et ‘ n
g e hoorg estrem d heid ?
A2. Wa t is jou verhoud ing tot jou kind m et ‘ n
g ehoorverlies?
A3. Wa t is d ie oud erd om va n u kind ?
A3. Wa t is d ie g eb oorte d a tum va n jou kind
m et ‘ n g ehoorverlies?
A4. Wa a r is u w oo na g tig ?
A4. Wa a r is jy w oona g tig ?
A5. Wa t is u huista a l?
A6. Wa t is oorw eg end jou huista a l?
A6. Wa t is u hoog ste kw a lifika sie?
A6. Wa t is jou hoog ste kw a lifika sie?
A7. Beskryf u etniese a g terg rond .
A8. Wa t is d ie oorsa a k va n u kind se
g e hoorverlies?
•
•
•
•
•
•
A7. Hoe sa l jy jou etniese a g terg rond b eskryf?
A8. Wa t d ink jy is d ie oorsa a k va n jou kind se
g ehoorverlies?
•
•
•
•
•
•
•
•
•
O nb ekend
O orerflik
Prem a turiteit
M ening itis
Rub ella
And er (sp esifiseer)
A9. Is u kind g ep a s m et ‘ n kog leêre
im p la nting ?
A10. Hoeveel kind ers het u b uiten u kind m et
‘ n g ehoorve rlies?
O nb ekend
O orerflik
Prem a turite it (te vroeg g eb ore)
M ening itis/ b reinvliesontsteking
Rub e lla (Duitse M a sels)
C M V (C ytom eg a lovirus)
Tra um a / b esering m et g eb oorte
O nseker
And er (sp esifiseer)
A9. Het jou kind ‘ n kog leêre im p la nting ?
A10. Hoeveel kind ers het jy (tota le a a nta l?)
A11. Hoeveel a nd er kind ers het jy w a t ook ‘ n
g ehoorverlies het?
197
University of Pretoria etd, Van der Spuy T (2006)
AFDELING B
VRAE INGESLUIT IN VOORSTUDIE
VRAE INGESLUIT IN HOOFSTUDIE
B1. Hoe oud w a s u kind toe d ie d ia g nose va n
g e hoorg estrem d heid b evestig is?
B1. Hoe oud w a s jou kind toe hy/ sy
g ed ia g noseer is m et ‘ n g ehoorverlies?
B2. Wa s u kind op g eneem in d ie Neona ta le
Intensie w e Sorg Eenheid (NISE)?
Vra a g is uitg ela a t
B3. Ind ien ja , w a a rom e n vir hoe la nk?
Vra a g is uitg ela a t
B4. Is u kind se g ehoo r g etoe ts net na
g e b o orte?
B3. Is jou kind se g ehoor g etoets m et
g eb oorte?
B5.Ind ien ja , w a t w a s d ie red e d a a rvoor?
Vra a g is uitg ela a t
•
•
Hosp ita a l b eleid
O p na m e in Neona ta le Intensiew e
Sorg Eenheid
B6. Ind ien nee, w ie het u verw ys vir ‘ n
g e hoortoets?
B3. Ind ien nee, w ie he t jou verw ys vir ‘ n
g ehoortoets?
B7. Wie het d ie d ia g no se a a n u oorg ed ra ?
B4. Wie het d ie d ia g nose va n jou kind se
g ehoorverlies oorg ed ra ?
B8. Wie sou u verkies om d ie d ia g nose oor te
d ra ?
B5. By w ie sou jy d ie g ra a g ste sulke nuus w ou
verneem ?
B9. Het d ie p ersoon w a t d ie d ia g no se
oorg ed ra het om g eg ee oor u g evoelens?
B6. Het d ie p ersoon w a t d ie sleg te nuus/
d ia g nose oorg ed ra het o m g eg ee oor jou
g evoelens?
B10. Wa s hierd ie p ersoon in b eheer va n d ie
situa sie ?
B7. Wa s hierd ie p erso on in b e heer va n d ie
situa sie?
B11. Het hierd ie p ersoon u voorsien va n
vold oend e inlig ting ?
B8. Het hierd ie p ersoon vir jou vold oend e
inlig ting verska f?
B12. Het hierd ie p ersoon u g erig in d ie
volg end e sta p w a t g eneem w o et w ord ?
B9. Het hierd ie p ersoon jou g erig in d ie
volg end e sta p w a t g eneem m oet w ord ?
B13. Het hierd ie p ersoon u g enoe g sa a m tyd
g e g un om vra e te vra ?
B10. Wa s d a a r vir jo u g e noeg tyd g eg un om
vra e te vra ?
B14. . Wa nneer d ie d ia g nose va n
g e hoorg estrem d heid d eur ‘ n oud ioloog a a n
ouers oorg ed ra w ord , hoe sou u d ie b ela ng
va n d ie volg end e rig lyne b eskryf ?
B11. Wa nneer d ie d ia g nose/ nuus va n ‘ n
g ehoorverlies a a n ouers oorg ed ra w ord , d ink
jy d it is b ela ng rik d a t d ie oud ioloo g w a t d ie
to ets uitg evoer het d ie nuus m oet oord ra ?
nood sa a lik = 1
verkieslik = 2
onse ker = 3
nie b e la ng rik nie = 4,
m o et g la d nie g ed o en w o rd nie =5
(Nood sa a klik/ Verkie slik/ d it m a a k nie sa a k nie / nie
b e la ng rik nie / M oe t g la d nie g ed o en w o rd
nie/ O nseker)
198
University of Pretoria etd, Van der Spuy T (2006)
•
Die d ia g no se m oet oo rg ed ra w ord d eur
d ie o ud io loo g w a t d ie toets uitg evo er he t
B12. Hoe b ela ng rik sou jy sê is d it d a t d ie
oud ioloog m oet sorg vir p riva a theid en
g enoeg sa m e tyd (sond er ond erb reking s)
w a nneer d ie nuus/ d ia g nose oo rg ed ra w ord ?
•
Die oud io loog m oet p riva a theid e n
g enoe g sa m e tyd (sond er enig e
ond erb reking s) verseker w a nne er d ie
d ia g nose oo rg ed ra w o rd
•
Die oud io loog m oet seker m a a k d a t oue rs
insig in d ie situa sie het
•
Ouers m o et a a ng em o ed ig wo rd om uiting
a a n hulle g evoele ns te g ee
•
Die oud io loog m oet m e t w a rm te en
em p a tie op tree
•
Die oud io loog m oet a a n ouers ‘ n
b reed vo erig e ra a m w erk g ee vir
to ekom stig e b e sluite en a ksies
•
Da a r m oe t ko nkrete a ktiw iteite a a n ouers
g eg e e w ord w a t uitg e voer ka n wo rd to t
en m et d ie volg end op vo lg -b esoek
•
‘ n Op vo lg b esoe k m oet d a d elik
g esked ulee r w ord
B14. Dink jy d it is nod ig d a t d ie oud ioloog a a n
ouers ‘ n b reed voerig e ra a m w erk m oet g ee vir
to ekom stig e b esluite en a ksies?
(Nood sa a klik/ Verkie slik/ d it m a a k nie sa a k nie / nie
b e la ng rik nie / M oe t g la d nie g ed o en w ord
nie/ O nseker)
B15. Hoe oud w a s jou kind toe hy/ sy/ julle
b eg in inska kel het in ‘ n vroeë intervensie
p rog ra m (b v. C a rel d u Toit Sentrum )?
B16. Hoe oud w a s u kind m et sy/ ha a r eerste
g e hoora p p a ra a tp a ssing ?
B16. Hoe oud w a s jou kind toe hy/ sy vir d ie
eerste keer g e p a s is m et g ehoo ra p p a ra te?
B17. Is d a a r enig e a nd er rig lyne w a t u a s
b e la ng rik sou b eskou vir oud ioloë w a nneer
sleg te nuus a a n ouers oo rg ed ra m oet w ord ?
Vra a g is uitg ela a t
B18. Wa t sou u b eskou a s d ie g rootste
b e hoefte vir oud iolog ie en vroeë intervensie
d ienste w a t a a n fa m ilies g eb ied w ord in d ie
eerste ja a r na d ie d ia g nose va n
g e hoorg estrem d heid ?
Vra a g is uitg ela a t
B19. Toe m y kind g ep a s is m et
g e hoora p p a ra te, w a s ek b ekom m erd :
•
•
•
•
B13. Hoe b ela ng rik sou jy sê is d it d a t d ie
oud ioloog m et w a rm te en em p a tie m oe t
op tree?
(Nood sa a klik/ Verkie slik/ d it m a a k nie sa a k nie / nie
b e la ng rik nie / M oe t g la d nie g ed o en w ord
nie/ O nseker)
B15. Hoe oud w a s u kind toe julle b eg in
inska kel het in ‘ n vroeë intervensie p rog ra m ?
•
(Nood sa a klik/ Verkie slik/ d it m a a k nie sa a k nie / nie
b e la ng rik nie / M oe t g la d nie g ed o en w o rd
nie/ O nseker)
O or hoe d ie g ehoora p p a ra te g a a n
lyk
Da t m y kind sosia a l a a nva a rb a a r sou
w ees
O or w a t m y vriend e/ fa m ilie sou sê
oor d ie g ehoora p p a ra te
O or of m y kind sou b a a tvind b y d ie
g e hoora p p a ra te
O or d ie ha ntering en versorg ing va n
g e hoora p p a ra te
B17. Toe jou kind g e p a s is m et
g ehoora p p a ra te, w a s jy b ekom m erd oor hoe
d ie g ehoora p p a ra te g a a n lyk?
(Ja / O nseker/ Nee)
B18. Wa s jy b ekom m erd o or of jou kind sosia a l
a a nva a rb a a r sou w ees?
(Ja / O nseker/ Nee)
B19.Wa s jy b ekom m erd oor w a t jou fa m ilie/
vriend e sou sê o or d ie g ehoora p p a ra te?
(Ja / O nseker/ Nee)
B20. Wa s jy b ekom m erd oor oor d ie versorg ing
en ha ntering va n d ie g ehoora p p a ra te?
(Ja / O nseker/ Nee)
199
University of Pretoria etd, Van der Spuy T (2006)
B20. Na d a t u kind g ep a s is m et
g e hoora p p a ra te, w a t w a s oorw eg end d ie
resp ons va n u fa m ilie en vriend e ?
•
•
•
•
•
B21. Na d a t jou kind g ep a s is m et
g ehoora p p a ra te, w a t w a s oorw eg end d ie
rea ksie va n jou fa m ilie en vriend e (m erk sleg s
een)?
G erea g eer m e t a a nva a rd ing e n ‘ n
p o sitiew e houd ing teenoor d ie
g e hoora p p a ra te
G erea g eer m e t verb a sing en skok
G erea g eer m e t sim p a tie om d a t hulle
g e w eet het d a t m y kind d ie
g e hoora p p a ra te b enod ig
G ed ink d a t d ie g ehoora p p a ra te nie
m y kind sa l ka n help nie
G ed ink m y kind b eskik oor m ind er
va a rd ig hed e a a ng esie n hy/ sy
g e hoora p p a ra te d ra
•
•
•
•
•
AFDELING C
200
G erea g eer m et a a nva a rd ing en ‘ n
p ositiew e houd ing tee noor d ie
g ehoora p p a ra te
G erea g eer m et verb a sing en skok
G erea g eer m et sim p a tie om d a t hulle
g ew eet het d a t m y kind d ie
g ehoora p p a ra te b e nod ig
G ed ink d a t d ie g ehoora p p a ra te nie
m y kind sa l ka n help nie
G ed ink m y kind b eskik oor m ind er
va a rd ig hed e a a ng esien hy/ sy
g ehoora p p a ra te d ra
University of Pretoria etd, Van der Spuy T (2006)
C1. Behoeftes vir Bera ding
C1. Behoeftes vir Bera ding
(Ja / O nseker/ Nee)
(Ja / O nseker/ Nee)
•
•
•
•
•
•
•
•
•
•
Ek het hulp nod ig om d ie em osionele
a sp ekte va n om ‘ n kind m et ‘ n
g e hoorg e strem d heid te hê, te
ha nteer
Ek het iem a nd in m y g esin/ fa m ilie
nod ig m et w ie ek ka n p ra a t oor m y
kind
Ek het iem a nd b uite m y fa m ilie nod ig
m et w ie e k ka n g e sels oor m y kind
Ek het ‘ n b ehoefte om a nd er ouers
m et g e hoorg e strem d e kind ers te
ontm oet
Ek het ‘ n b ehoefte om a nd er ouer
kind ers/ volw a ssenes m et ‘ n
g e hoorg estrem d heid te ontm oet
Ek sou g ra a g w il d eel w ord va n ‘ n
ond ersteuning sg roep vir ouers va n
g e hoorg estrem d e kind ers
Ek het ‘ n b ehoefte om m et ‘ n
b e ra d er te p ra a t oor m y a g ressie/
frustra sie m et m y kind
Ek het m eer tyd nod ig vir m yself
Ek b enod ig hulp om m y kind se
toesta nd a a n a nd er te ve rd uid elik
Ek b enod ig hulp / rig lyne oor hoe om
a nd er se resp onse oor m y kind te
ha nteer
•
•
•
•
•
•
•
•
•
•
Ek het hulp nod ig om d ie em osionele
a sp ekte va n o m ‘ n kind m et ‘ n
g ehoorg estrem d heid te hê , te
ha nteer
Ek het iem a nd in m y g esin/ fa m ilie
nod ig m et w ie ek ka n p ra a t o or m y
kind
Ek het iem a nd b uite m y fa m ilie nod ig
m et w ie ek ka n g esels oor m y kind
Ek het ‘ n b ehoefte om a nd er oue rs
m et g ehoorg estrem d e kind ers te
ontm oet
Ek het ‘ n b ehoefte om a nd er oue r
kind ers/ volw a ssenes m et ‘ n
g ehoorg estrem d heid te ontm oet
Ek sou g ra a g w il d eel w ord va n ‘ n
ond ersteuning sg roep vir ouers va n
g ehoorg estrem d e kind ers
Ek het ‘ n b ehoefte om m et ‘ n
b era d e r te p ra a t oor m y a g ressie/
frustra sie m e t m y kind
Ek het m eer tyd nod ig vir m yself
Ek b enod ig hulp om m y kind se
to esta nd a a n a nd er te verd uid elik
Ek b enod ig hulp / rig lyne oo r hoe om
a nd er se resp onse oor m y kind te
ha nteer
C2. Behoeftes vir Fa milie Ondersteuning
C2. Behoeftes vir Fa milie Ondersteuning
(Ja / O nseker/ Nee)
(Ja / O nseker/ Nee)
•
•
•
•
•
M y huw eliksm a a t b enod ig hulp om
ons kind te versta a n / te a a nva a r
O ns g esin/ fa m ilie b eno d ig iem a nd
om op ‘ n g ereeld e b a sis m ee te
p ra a t oor hoe om ons kind te ha nteer
O ns g esin/ fa m ilie b enod ig
g e leenthed e w a a r ons a nd er g esinne
m et g e hoorg e strem d e kind ers ka n
ontm oet
O ns g esin/ fa m ilie b enod ig hulp oor
hoe om m eka a r te ond ersteun en b y
te sta a n
O ns b enod ig hulp oor hoe om ons
kind te d isip lineer
•
•
•
•
•
M y huw eliksm a a t b enod ig hulp o m
ons kind te versta a n / te a a nva a r
O ns g esin/ fa m ilie b enod ig iem a nd
om op ‘ n g ereeld e b a sis m ee te
p ra a t oor hoe om ons kind te ha nteer
O ns g esin/ fa m ilie b enod ig
g eleenthed e w a a r ons a nd er g esinne
m et g ehoorg estrem d e kind ers ka n
ontm oet
O ns g esin/ fa m ilie b enod ig hulp oor
hoe om m eka a r te ond ersteun e n b y
te sta a n
O ns b eno d ig hulp oor hoe om o ns
kind te d isip lineer
C3. Fina nsiële Behoeftes
C3. Fina nsiële Behoeftes
(Ja / O nseker/ Nee)
(Ja / O nseker/ Nee)
•
Ek b enod ig fina nsiëIe ond ersteuning
vir d ie b eta ling va n g ehoora p p a ra te
/ kog leêre inp la nting
•
201
Ek b enod ig fina nsiëIe ond ersteuning
vir d ie b eta ling va n g ehoora p p a ra te
/ kog leêre inp la nting
University of Pretoria etd, Van der Spuy T (2006)
•
•
•
Ek b enod ig hulp in d ie b eta ling va n
sp esia le d ie nste w a t m y kind b enod ig
(sp ra a ktera p ie, konsulta sie va n
d okters ens.)
Ek b enod ig hulp in d ie b eta ling en
org a nisering va n vervoer vir m y kind
Ek b enod ig fina nsiële o nd ersteuning
vir a d d isionele uitg a w es/ sp esia le
toerusting w a t m y kind b enod ig (FM
sisteem , b a tterye ens.).
•
•
•
Ek b enod ig hulp in d ie b eta ling va n
sp esia le d ienste w a t m y kind b enod ig
(sp ra a ktera p ie, konsulta sie va n
d okters ens.)
Ek b enod ig hulp in d ie b eta ling en
org a nisering va n vervoer vir m y kind
Ek b enod ig fina nsiële ond ersteuning
vir a d d isionele uitg a w es/ sp esia le
to erusting w a t m y kind b enod ig (FM
sisteem , b a tterye ens.).
C 4. Hoeveel ond e rsteuning kry u huid ig lik va n
d ie volg end e p ersone?
C 4. Hoeveel ond ersteuning kry jy op d ie
oom b lik va n d ie volg end e p ersone?
(G een/ Ba ie m in/ G em id d eld / Ba ie)
(G e en/ Ba ie m in/ G em id d eld / Ba ie)
•
•
•
•
•
Huw eliksm a a t
Fa m ilie
Vriend e
O ud ioloog
O uerleid ing s tera p eut
•
•
•
•
•
Huw eliksm a a t
Fa m ilie
Vriend e
O ud ioloog
O uerleid ing s tera p eut
AFDELING D
VRAE INGESLUIT IN DIE VOORSTUDIE
VRAE INGESLUIT IN DIE HOOFSTUDIE
D1. Behoeftes vir inligting oor gehoor en
gehoorverlies
D1. Behoeftes vir inligting oor gehoor en
gehoorverlies
(Ja / Nee/ O nseker)
(Ja / Nee/ O nseker)
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
inlig ting oor norm a le g ehoor
hoe m y kind hoor
oorsa ke va n g ehoorverlies
oud iog ra m
hoe g ehoora p p a ra te w erk
verw a g ting e va n g ehoora p p p a ra te
versorg ing va n g ehoora p p a ra te
FM sistem e
kog leêre inp la nting s
hoe om g ehoo ra p p a ra te in m y kind
se ore te hou
1.
nlig ting oor norm a le g e hoor (hoe
g ehoor w erk)
2. hoe m y kind m et ‘ n g ehoorverlie s
hoor
3. oorsa ke va n g ehoorverlies
4. versta a n hoe oud iog ra m w erk
5. hoe g ehoora p p a ra te w erk
6. w a t om te verw a g va n
g ehoora p p p a ra te
7. versorg ing en insta nd houd ing va n
g ehoora p p a ra te
8. FM sistem e en a nd er tip e
g ehoora p p era te
9. kog leêre inp la nting s
10. hoe om g ehoora p p a ra te in m y kind
se ore te hou
D2. Behoeftes vir inligting oor ta a l en
kommunika sie
D2. Behoeftes vir inligting oor ta a l en
kommunika sie
(Ja / Nee/ O nseker)
(Ja / Nee/ O nseker)
202
University of Pretoria etd, Van der Spuy T (2006)
11. hoe ‘ n g ehoorverlies m y kind se
verm oë om te leer p ra a t b eïnvloed
12. hoe om m y kind te leer luister en
p ra a t
13. hoe ta a l ontw ikkel
14. hoe m y kind w il kom m unikeer
15. hoe ek m et m y kind ka n
kom m unikeer
11. hoe ‘ n g ehoorverlies m y kind se
verm oë om te leer p ra a t b eïnvloed
12. hoe om m y kind te leer luister en
p ra a t
13. hoe ta a l ontw ikkel
14. hoe m y kind w il kom m unikeer
15. hoe ek m et m y kind ka n
kom m unike er
D3. Behoeftes vir inligting oor intervensie en
opvoedings- opsies
D3. Behoeftes vir inligting oor intervensie en
opvoedings-opsies
(Ja / Nee/ O nseker)
(Ja / Nee/ O nseker)
16. inlig ting oor kom m unika sie-op sies
17. inlig ting oor vroeë intervensie d ienste
18. inlig ting oor op voed ing s-op sies vir m y
kind
19. inlig ting oor oud iolog iese d ienste
20. inlig ting oor sp ra a k en ta a l tera p ie
d ienste
16. inlig ting oor kom m unika sie-op sies/
b ena d ering s (g eb a reta a l, na tuurlik
oud itief-ora a l ens.)
17. inlig ting oor vroeë intervensie d ienste/
p rog ra m m e b eskikb a a r vir m y kind
18. inlig ting oor op voed ing s-op sies vir m y
kind
19. inlig ting oor oud iolog iese d ienste
20. inlig ting oor sp ra a k en ta a l tera p ie
d ienste
D4. Va nuit b og enoem d e g enom m erd e lys
(1 – 20), d ui d ie 3 o nd erw erp e a a n w a t vir u
d ie b ela ng rikste w a s m et tye va n d ie
d ia g no se va n u kind se g ehoorg estrem d heid .
D4. Va nuit b og enoem d e g enom m erd e lys
(1-20), d ui d ie 5 ond erw erp e a a n w a t vir jou
d ie b ela ng rikste w a s net toe jou kind m et ‘ n
g ehoorverlies g ed ia g noseer is (m et a nd er
w oord e, w a t w ou jy d ie g ra a g ste w eet net
to e jy g ehoor het jou kind het ‘ n
g ehoorverlies)
D5. Va nuit b og enoem d e g enom m erd e lys
(1 - 20), d ui d ie 3 ond erw erp e a a n w a t vir u
d ie b ela ng rikste w a s ‘ n p a a r m a a nd e na d ie
d ia g no se va n g ehoorg estrem d heid
(g ed urend e vroeë inte rvensie):
D5. Va nuit b og enoem d e g enom m erd e lys
(1-20), d ui d ie 5 ond erw erp e a a n w a t vir jou
d ie b ela ng rikste w a s ‘ n p a a r m a a nd e na d a t
jy g ehoor het jou kind het ‘ n g ehoorverlies.
D6. Lys a sb . a nd er ond erw erp e vir inlig ting
w a t volg ens u b e la ng rik sou w ees om te
ontva ng / te b esp reek:
Vra a g uitg ela a t
D6. G ra a d va n g ehoo rverlie s
(sleg s vir ka ntoorg eb ruik)
•
•
•
•
•
203
g ering
g em id d eld
g em id d eld -ernstig
ernstig
uiterm a tig
University of Pretoria etd, Van der Spuy T (2006)
Byla e C
GEHOORGESTREMDHEID BY JONG KINDERS:
OUERS SE INISIËLE BEHOEFTES VIR INLIGTING EN ONDERSTEUNING
M erk telkens sleg s EEN toep a slike a ntwoord b y elk va n d ie volg end e vra e d eur ‘ n
kruisie in d ie ooreenstem m end e b lokkie te trek:
Afdeling A: Biografiese Inligting
A1. Wa t is d ie g esla g va n jou kind m et ‘ n g ehoorverlies?
M a nlik
Vroulik
A2. Wa t is jou verhoud ing tot jou kind m et ‘ n gehoo rverlies?
Ouer
Pleeg ouer
Stiefouer
Versorger
A3. Wa t is d ie g eb oorted a tum va n jou kind m et ‘ n g e hoorverlies?
JJJJ
MM
DD
A4. Wa a r is jy woona g tig ?
Sta d
Dorp
Pla a s en/ of Pla ttela nd
A5. Wa t is oorweg end jou huista a l?
Eng els
Afrika a ns
Xhosa
And er (sp esifiseer)
…………………………………….
A6. Wa t is jou hoog ste kwa lifika sie?
Geen
Prim êre/ la erskool (Gra a d 1-7)
Hoërskool (Gra a d 8-11)
M a triek voltooi
Tersiêre (na -skool) kwa lifika sie
A7. Hoe sa l jy jou etniese a g terg rond b eskryf?
Bla nk
Swa rt
Kleurling
Asia ties
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A8. Wa t d ink jy is d ie oorsa a k va n jou kind se g ehoorverlies?
Onb ekend
Oorerflik
Prem a turiteit (te vroeg geb ore)
M eningitis/ Breinvliesontsteking
Rub ella (Duitse M a sels)
CM V (Cytom ega lovirus)
Tra um a / b esering m et g eb oorte
Onseker
And er (sp esifiseer)
………….……………………………………..
…………………….…………………………..
A9. Het jou kind ‘ n kog leêre inp la nting?
Ja
Nee
A10. Hoeveel kind ers het jy (tota le a a nta l)?
A11. Hoeveel ander kind ers het jy wa t ook ‘ n g ehoorverlies het?
Afdeling B: Ervaring van Diagnose en Vroeë Intervensie
B1. Hoe oud wa s jou kind toe hy/ sy g ed ia gnoseer is m et ‘ n g ehoorverlies?
Ja a r
…………………………
M a a nd e
…………………………………
B2. Is jou kind se g ehoor g etoets m et g eb oorte?
Ja
Nee
Onseker
B3. Ind ien nee, wie het jou verwys vir ‘ n gehoortoets?
Self
Ped ia ter
Fa m ilielid / vriend / vriend in
And er (b eskryf)
……………………………………
……………………………………
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B4. Wie het d ie d ia g nose va n jou kind se gehoorverlies oorg ed ra ?
Oud ioloog
Ped ia ter
Oor-, Neus- en Keelsp esia lis
Verp leegster
Weet nie
Iem a nd a nd ers (Sp esifiseer)
…………………………………………………
…………………………………………………
B5. By wie sou jy d ie g ra a g ste sulke nuus wou verne em ?
Oud ioloog
Ped ia ter
Oor-, neus- en Keelsp esia lis
And er (Sp esifiseer)
…………………………………………………
…………………………………………………
B6. Het d ie p ersoon wa t d ie sleg te nuus/ d ia gnose oorged ra het om g eg ee oor jou
gevoelens?
Tota a l en a l
Ged eeltelik
Gla d nie
B7. Wa s hierd ie p ersoon in b eheer va n d ie situa sie?
Tota a l en a l
Ged eeltelik
Gla d nie
B8. Het hierd ie p ersoon vir jou vold oend e inligting verska f?
Tota a l en a l
Ged eeltelik
Gla d nie
B9. Het hierd ie p ersoon jou g erig in d ie volg end e sta p wa t g eneem m oet word ?
Tota a l en a l
Ged eeltelik
Gla d nie
B10. Wa s d a a r vir jou tyd g eg un om vra e te vra ?
Tota a l en a l
Ged eeltelik
Gla d nie
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B11. Wa nneer d ie d ia g nose/ nuus va n ‘ n gehoorverlies a a n ouers oorg ed ra word ,
d ink jy d it is b ela ng rik d a t d ie oud ioloog wa t d ie toets uitg evoer het d ie nuus m oet
oord ra ?
Nood sa a klik
Verskieslik
Dit m a a k nie sa a k nie
Nie b ela ng rik nie
M oet g la d nie g ed oen word nie
Onseker
B12. Hoe b ela ng rik sou jy sê is d it d a t d ie oud iolo og m oet sorg vir p riva a theid en
genoegsa m e tyd (sond er ond erb reking s) wa nneer d ie nuus/ d ia g nose oorg ed ra
word ?
Nood sa a klik
Verskieslik
Dit m a a k nie sa a k nie
Nie b ela ng rik nie
M oet g la d nie g ed oen word nie
Onseker
B13. Hoe b ela ng rik sou jy sê is d it d a t d ie oud iolo og m et wa rm te en em p a tie m oet
op tree?
Nood sa a klik
Verskieslik
Dit m a a k nie sa a k nie
Nie b ela ng rik nie
M oet g la d nie g ed oen word nie
Onseker
B14. Dink jy d it is nod ig d a t d ie oud ioloog a a n oue rs ‘ n b reed voerig e ra a m werk m oet
gee vir toekom stige b esluite en a ksies?
Nood sa a klik
Verskieslik
Dit m a a k nie sa a k nie
Nie b ela ng rik nie
M oet g la d nie g ed oen word nie
Onseker
B15. Hoe oud wa s jou kind toe hy/ sy/ julle b eg in inska kel het in ‘ n vroeë intervensie
p rogra m (b v Ca rel d u Toit Sentrum )?
Ja a r
………………………………….
M a a nd e
……………………………………
B16. Hoe oud wa s jou kind toe hy/ sy vir d ie eerste keer gep a s is m et
gehoora p p a ra te?
Ja a r
…………………………………..
M a a nd e
……………………………………
B17. Toe jou kind gep a s is m et g ehoora p p a ra te, wa s jy b ekom m erd oor hoe d ie
gehoora p p a ra te ga a n lyk?
Ja
Onseker
Nee
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B18. Wa s jy b ekom m erd oor of jou kind sosia a l a a nva a rb a a r sou wees?
Ja
Onseker
Nee
B19. Wa s jy b ekom m erd oor wa t jou fa m ilie/ vriend e sou sê oor d ie g ehoora p p a ra te?
Ja
Onseker
Nee
B20. Wa s jy b ekom m erd oor d ie versorging en ha ntering va n d ie gehoora p p a ra te?
Ja
Onseker
Nee
B21. Na d a t jou kind gep a s is m et g ehoora p p a ra te, wa t wa s oorweg end d ie rea ksie
va n jou fa m ilie en vriend e (m erk slegs een):
Gerea g eer m et a a nva a rd ing en ‘ n p ositiewe houd ing teenoor d ie
gehoora p p a ra te
Gerea g eer m et verb a sing en skok
Gerea g eer m et sim p a tie om d a t hulle geweet het d a t m y kind d ie
gehoora p p a ra te b enod ig
Ged ink d a t d ie g ehoora p p a ra te nie m y kind sa l ka n help nie
Ged ink m y kind b eskik oor m ind er va a rd ig hed e a a ngesien hy/ sy
gehoora p p a ra te d ra
Afdeling C: Behoeftes vir Berading en Ondersteuning
C1. Behoeftes vir Berading
Ja
Ek het hulp nod ig om d ie em osionele a sp ekte va n om ‘ n kind
m et ‘ n g ehoorverlies te hê, te ha nteer
Ek het iem a nd b uite m y fa m ilie nod ig m et wie ek ka n gesels
oor m y kind
Ek het ‘ n b ehoefte om a nd er ouers m et g ehoorg estrem d e
kind ers te ontm oet
Ek het ‘ n b ehoefte om a nd er ouer kind ers/ volwa ssenes m et
‘ n g ehoorverlies te ontm oet
Ek sou gra a g wil d eel word va n ‘ n ond ersteuning sg ro ep vir
ouers va n gehoorg estrem d e kind ers
Ek het ‘ n b ehoefte om m et ‘ n b era d er te p ra a t oor m y
a g ressie/ frustra sie m et m y kind
Ek het m eer tyd nod ig vir m yself
Ek b enod ig hulp om m y kind se toesta nd a a n a nd er te
verd uid elik
Ek b enod ig hulp / riglyne oor hoe om a nd er se resp onse oor
m y kind te ha nteer
208
Onseker
Nee
University of Pretoria etd, Van der Spuy T (2006)
C2. Behoeftes vir Familie Ondersteuning
Ja
Onseker
Nee
Ja
Onseker
Nee
M y huweliksm a a t b enod ig hulp om ons kind te versta a n / te
a a nva a r
Ons g esin/ fa m ilie b enod ig iem a nd om op ‘ n g ereeld e b a sis
m ee te p ra a t oor hoe om ons kind te ha nteer
Ons g esin/ fa m ilie b enod ig geleenthed e wa a r ons a nd er
gesinne m et g ehoorg estrem d e kind ers ka n ontm oet
Ons g esin/ fa m ilie b enod ig hulp oor hoe om m eka a r te
ond ersteun en b y te sta a n
Ons b enod ig hulp oor hoe om ons kind te d isip lineer
C3. Finansiële Behoeftes
Ek b enod ig fina nsiëIe ond ersteuning vir d ie b eta ling va n
gehoora p p a ra te / kog leêre inp la nting
Ek b enod ig hulp in d ie b eta ling va n sp esia le d ienste wa t m y
kind b enod ig (sp ra a ktera p ie, konsulta sie va n d okters ens.)
Ek b enod ig hulp in d ie b eta ling en org a nisering va n vervoer
vir m y kind
Ek b enod ig fina nsiële ond ersteuning vir a d d isionele uitga wes/
sp esia le toerusting wa t m y kind b enod ig (FM sisteem ,
b a tterye ens.).
C4. Hoeveel ond ersteuning kry jy op d ie oom b lik va n d ie volg end e p ersone?
Geen
Baie min
Gemiddeld
Baie
Huweliksm a a t
Fa m ilie
Vriend e
Oud ioloog
Ouerleid ing s tera p eut
Afdeling D: Behoeftes vir Inligting
M eeste ouers va n kind ers m et ‘ n g ehoorverlies het ‘ n b ehoefte vir vold oend e inligting
en hier volg ‘ n lys va n d ie m ees a lg em ene ond erwerp e. Het jy ‘ n b ehoefte om
inlig ting oor elk va n hierd ie ond erwerp e te ontva ng ?
D1. Behoeftes vir inligting oor gehoor en gehoorverlies
Ja
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
inligting oor norm a le g ehoor (hoe g ehoor werk)
hoe m y kind m et ‘ n gehoorverlies hoor
oorsa ke va n g ehoorverlies
versta a n hoe d ie oud iog ra m werk
hoe g ehoora p p a ra te werk
wa t om te verwa g va n gehoora p p a ra te
versorging en insta nd houd ing va n gehoora p p a ra te
FM sistem e en a nd er tip e g ehoora p p a ra te
kog leêre inp la ntings
hoe om gehoora p p a ra te in m y kind se ore te hou
209
Nee
Onseker
University of Pretoria etd, Van der Spuy T (2006)
D2. Behoeftes vir inligting oor taal en kommunikasie
Ja
Nee
Onseker
11. hoe ‘ n gehoorverlies m y kind se verm oë om te leer p ra a t
b eïnvloed
12. hoe om m y kind te leer luister en p ra a t
13. hoe ta a l ontwikkel
14. hoe m y kind wil kom m unikeer
15. hoe ek m et m y kind ka n kom m unikeer
D3. Behoeftes vir inligting oor intervensie en opvoedings-opsies
Ja
Nee
Onseker
16. inligting oor kom m unika sie op sies/ b ena d ering s
(g eb a reta a l, na tuurlik oud itief-ora a l ens.)
17. inligting oor vroeë intervensie d ienste / p rogra m m e
b eskikb a a r vir m y kind
18. inligting oor op voed ing s-op sies vir m y kind
19. inligting oor oud iologiese d ienste
20. inligting oor sp ra a k en ta a l tera p ie d ienste
(G ed e eltelik sa a m g este l va nuit: The Fa mily Needs Survey, Ba ily & Sim eonsson, 1990)
D4. Va nuit b og enoem d e g enom m erd e lys (1-20), d ui d ie 5 ond erwerp e a a n wa t vir
jou d ie b ela ng rikste wa s net toe jou kind met ‘n gehoorverlies gediagnoseer is (m et
a nd er woord e, wa t wou jy d ie g ra a gste weet net toe jy g ehoor het jou kind het ‘ n
gehoorverlies?)
D5. Va nuit b og enoem d e g enom m erd e lys (1-20), d ui d ie 5 ond erwerp e a a n wa t vir
jou d ie b ela ng rikste wa s ‘ n paar maande nadat jy gehoor het jou kind het ‘n
gehoorverlies?
Baie dankie vir jou deelname! Dit word opreg waardeer.
Slegs vir ka ntoorgebruik:
Respondent nommer:
Gra a d va n gehoorverlies:
G ering (15-40 d BHL)
G em id d eld (40-55 d BHL)
G em id d eld -e rnstig
(55-70 d BHL)
Ernstig (70-90 d BHL)
Uiterm a tig (>90 d BHL)
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YOUNG HEARING IMPAIRED CHILDREN:
PARENTS’ INITIAL NEEDS FOR INFORMATION AND SUPPORT
Plea se c om p lete the following b y selec ting ONE a p p rop ria te a nswer a t ea c h
q uestion:
Section A: Biographic Information
A1. Wha t is the sex of your c hild with a hea ring lo ss?
M a le
Fem a le
A2. Wha t is your rela tionship with your c hild with a hea ring im p a irm ent?
Pa rent
Foster p a rent
Step p a rent
Provid er/ Sup p orter
A3. Wha t is the d a te of b irth of your c hild with a hea ring loss?
YYYY
MM
DD
A4. Where d o you live?
City
Town
Fa rm / c ountry-sid e
A5. Wha t is for the m ost p a rt your hom e la ng ua ge?
Eng lish
Afrika a ns
Xhosa
Other (p lea se sp ec ify)
…………………………………….
A6. Wha t is your hig hest q ua lific a tion?
None
Prim a ry Sc hool (Gra d e 1-7)
Hig h Sc hool (Gra d e 8-11)
M a tric c om p leted
Tertia ry q ua lific a tion
A7. How would you d esc rib e your ethnic b a c kg round ?
White
Bla c k
Colored
Asia n
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A8. Wha t d o you think c a used your c hild ’ s hea ring loss?
Unknown
Hered ity
Prem a turity (b orn too ea rly)
M eningitis
M a terna l rub ella (Germ a n M ea sles)
CM V (Cytom ega lovirus)
Tra um a / injury a t b irth
Other (p lea se sp ec ify)
…………………………………………..…..
………………………………………………
A8. Does your c hild ha ve a c oc hlea r im p la nt?
Yes
No
A9. How m a ny c hild ren d o you ha ve in tota l?
A10. How m a ny other c hild ren d o you ha ve whic h a lso ha s a hea ring loss?
Section B: Experience of Diagnosis and Early Intervention
B1. How old wa s your c hild when his/ her hea ring loss wa s d ia gnosed / c onfirm ed ?
Yea rs
………………………….
M onths
……….………………………..
B2. Wa s your c hild ’ s hea ring tested a t b irth?
Yes
No
Unsure
B3. If No, who referred you for a hea ring test?
Self
Ped ia tric ia n
Fa m ily m em b er/ friend
Other (p lea se exp la in)
……………………………………
……………………………………
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B4. Who m a d e the d ia gnosis of your c hild ’ s hea ring loss?
Aud iolog ist
Ped ia tric ia n
Ea r, Nose a nd Throa t Sp ec ia list
Nurse
Som eone else (p lea se sp ec ify)
………………………………………………….
………………………………………………….
B5. From whom should you like to rec eive suc h b a d news/ the d ia gnosis?
Aud iolog ist
Ped ia tric ia n
Ea r, Nose a nd Throa t Sp ec ia list
Som eone else (p lea se sp ec ify)
…………………………………………………
…………………………………………………
B6. Did the p erson c onveying the d ia gnosis of your c hild ’ s hea ring loss c a re a b out
your feelings?
Tota lly
Pa rtia lly
Not a t a ll
B7. Wa s this p erson in c ontrol of the situa tion?
Tota lly
Pa rtia lly
Not a t a ll
B8. Did you rec eive suffic ient inform a tion from this p erson?
Tota lly
Pa rtia lly
Not a t a ll
B9. Did this p erson g uid e you in wha t the next step is to b e ta ken?
Tota lly
Pa rtia lly
Not a t a ll
B10. Were you g iven tim e to a sk q uestions?
Tota lly
Pa rtia lly
Not a t a ll
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B11. Do you think it is im p orta nt tha t when the d ia g nosis of a hea ring loss is c onveyed
to p a rents, tha t the sa m e a ud iolog ist who a d m iniste red the test should b rea k the
news?
Essentia l
Desira b le
Doesn’ t m a tter
Not nec essa ry
Should not b e d one
Unsure
B12. How im p orta nt d o you think is it for the a ud io log ist to ensure p riva c y a nd
a d eq ua te tim e (with no interrup tions) when the d ia g nosis is c onveyed to p a rents?
Essentia l
Desira b le
Doesn’ t m a tter
Not nec essa ry
Should not b e d one
Unsure
B13. How im p orta nt is it tha t the a ud iologist should resp ond with wa rm th a nd
em p a thy?
Essentia l
Desira b le
Doesn’ t m a tter
Not nec essa ry
Should not b e d one
Unsure
B14. Do you think it is im p orta nt tha t the a ud iolog ist should g ive p a rents a b roa d
fra m e for future d ec isions a nd a c tions?
Essentia l
Desira b le
Doesn’ t m a tter
Not nec essa ry
Should not b e d one
Unsure
B15. How old wa s your c hild when he/ she sta rted in a n Ea rly Intervention p rog ra m
( Ca rel d u Toit Centre)?
Yea rs
………………………………….
M onths
……………………………………
B16. How old wa s your c hild when he/ she wa s fitted with hea ring a id s?
Yea rs
…………………………………..
M onths
……………………………………
B17. When your c hild initia lly wa s fitted with hea ring a id s, were you c onc erned a b out
wha t the hea ring a id s would look like?
Yes
Unsure
No
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B18. Were you c onc erned tha t your c hild would not b e soc ia lly a c c ep ted ?
Yes
Unsure
No
B19. Were you c onc erned a b out wha t friend s a nd fa m ily would sa y a b out the
hea ring a id s?
Yes
Unsure
No
B20. Were you c onc erned a b out the c a re a nd m a intena nc e of the hea ring a id s?
Yes
Unsure
No
B21. After the initia l hea ring a id fitting , wha t wa s for the m ost p a rt your fa m ily
m em b ers a nd friend s’ resp onse (m a rk only one):
Rea c ted to m y c hild ’ s hea ring a id s with a c c ep ta nc e a nd a p ositive a ttitud e
Rea c ted to m y c hild ’ s hea ring a id s surp rise or shoc k
Were sym p a thetic b ec a use m y c hild need ed hea ring a id s
Thoug ht the hea ring a id s would not help
Thoug ht m y c hild wa s less c a p a b le b ec a use he/ she wo re hea ring a id s
Section C: Needs for Counseling and Support
C1. Counseling Needs
Yes
I need help in c op ing with the em otiona l a sp ec ts of ha ving a
c hild with a hea ring im p a irm ent
I need som eone outsid e m y fa m ily to ta lk to a b out m y c hild
I need op p ortunities to m eet with other p a rents of hea ring
im p a ired c hild ren
I need op p ortunities to m eet old er c hild ren/ a d ults with a
hea ring im p a irm ent
I would like to b e p a rt of a sup p ort-g roup for p a re nts of
c hild ren with a hea ring im p a irm ent.
I need to ta lk to a c ounselor a b out m y a g gressions/
frustra tions a b out m y c hild
I need m ore tim e for m yself
I need help in how to exp la in m y c hild ’ s c ond ition to others
I need help / guid elines on how to ha nd le other p eop le’ s
resp onses to m y c hild
215
Unsure
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University of Pretoria etd, Van der Spuy T (2006)
C2. Family Support Needs
Yes
Unsure
No
Yes
Unsure
No
M y sp ouse need s help on how to und ersta nd a nd a c c ep t our
c hild
Our fa m ily need som eone to ta lk to on a reg ula r b a sis on how
to ha nd le a nd c op e with our hea ring im p a ired c hild
Our fa m ily need op p ortunities to m eet with other fa m ilies of
hea ring im p a ired c hild ren
Our fa m ily need help on how to sup p ort ea c h other
Our fa m ily need help on how to d isc ip line our c hild
C3. Financial Needs
I need s fina nc ia l sup p ort for p a ying for hea ring a id s/ c oc hlea r
im p la nt
I need help in p a ying for sp ec ia l servic es for m y c hild (sp eec h
thera p y, d oc tor’ s c onsulta tion etc .)
I need help in p a ying a nd a rra ng ing tra nsp ort for m y c hild
I need help in p a ying for a d d itiona l exp enses/ sp ec ia l
eq uip m ent m y c hild need (FM system , b a tteries etc .)
C4. How m uc h sup p ort d o you c urrently rec eive from the following p ersons?
Very much
Average
A little bit
Non
Sp ouse
Fa m ily m em b ers
Friend s
Aud iolog ist
Pa rent g uid a nc e
thera p ist
Section D: Information Needs
M a ny p a rents of c hild ren with a hea ring loss ha ve need s for inform a tion. To follow is a
list of the top ic s freq uently id entified . Do you ha ve the need to rec eive inform a tion on
ea c h one of these top ic s?
D1. Needs for information on hearing and hearing loss:
Yes
21.
22.
23.
24.
25.
26.
27.
28.
29.
30.
how norm a l ea rs hea r a nd how the ea r works
how m y c hild with a hea ring loss hea rs
c a uses of hea ring loss
und ersta nd ing the a ud iog ra m
how hea ring a id s work
wha t to exp ec t from hea ring a id s
c a re a nd m a intena nc e of hea ring a id s
FM system s a nd other typ es of hea ring a id s
c oc hlea r im p la nts
how to keep hea ring a id s in m y c hild ’ s ea rs
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D2. Needs for information on language and communication:
31. how
ta lk
32. how
33. how
34. how
35. how
Yes
No
Unsure
Yes
No
Unsure
will a hea ring loss a ffec t m y c hild ’ s a b ility to lea rn to
to tea c h m y c hild to listen a nd ta lk
la ng ua g e d evelop s
m y c hild will c om m unic a te
c a n I c om m unic a te with m y c hild
D3. Needs for information on intervention and educational options:
36. inform a tion a b out c om m unic a tion op tions/ a p p roa c hes
(sign la ng ua g e, na tura l a ud itory ora l etc .)
37. inform a tion a b out ea rly intervention servic es / p rog ra m s
a va ila b le for m y c hild
38. inform a tion a b out ed uc a tiona l op tions for m y c hild
39. inform a tion a b out a ud iolog ic a l servic es
40. inform a tion a b out sp eec h la ng ua g e p a tholog y servic es
(Com p ile d in p a rt from: The Fa mily Needs Survey, Ba ily & Sime onsso n, 1990).
D4. From the num b ered list a b ove (1-20), ind ic a te the 5 m ost im p orta nt top ic s tha t
a p p lied to you at the time your child’s hearing loss was identified (in other word s,
wha t were the m ost im p orta nt thing s you wa nted to know a t the tim e of the
d ia g nosis):
D5. From the a b ove num b ered list (1-20), ind ic a te the 5 m ost im p orta nt top ic s tha t
a p p lied to you a few months after the hearing loss was identified:
Thank you so much for your participation!
For office use only
Respondent number:
Degree of hea ring loss:
Slig ht(15-40 d BHL)
M ild (40-55 d BHL)
M ild -severe (55-70 d BHL)
Severe (70-90 d BHL)
Pro fo und (>90 d BHL)
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Bylae D
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Byla e E
FOKUSGROEPGIDS
1. Openings vraag:
“ Wa t is jou na a m en vertel vir ons een d ing va n jou kind wa t jou la a t g lim la g”
2. Inleidende vraag:
“ Hoe het julle uitgevind julle kind het ‘ n gehoorve rlies? Vertel ons va n jou p ersoonlike
erva ring d a a rva n”
3. Oorgangs vraag:
“ Noud a t jou kind reed s ged ia g noseer is, g ep a s is m e t g ehoora p p a ra te/ kog leêre
inp la nting en inska kel b y ….. (intervensie sentrum ), hoe g a a n d it nou m et jou?”
4. Sleutel vrae:
•
“ Wa t is ouers se b ehoeftes wa nneer d ie d ia gnose va n ‘ n g ehoorverlies
oorged ra word (wa t word b eskou a s leem tes)?”
•
“ Wa t sa l jy sê is ouers se sp esifieke b ehoeftes vir inlig ting wa nneer hulle
hoor hulle kind het ‘ n gehoorverlies?”
•
“ Wa t is ouers se b ehoeftes vir ond ersteuning en b era d ing wa nneer
hulle hoor hulle kind het ‘ n g ehoorverlies?”
•
“ Hoe m oet ouers d eurlop end b y ….. (intervensie sentrum ) ond ersteun
word ?”
5. Afsluitings vrae:
•
Refleksie vraag:
“ Va n a lles wa t ons nou b esp reek het, wa t sou jy sê is d ie g rootste b ehoefte
va n ouers va n kind ers m et ‘ n g ehoorverlies?”
•
Opsommende vraag:
“ Het ek a lles wa a roor ons g ep ra a t het korrek op gesom ?”
•
Finale vraag:
“ Is d a a r enig e iets wa t b ela ngrik is wa a roor ons nie g ep ra a t het nie?”
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FOCUS GROUP GUIDE
1. Opening question:
“ Wha t is your na m e a nd sha re with us one thing a b out your c hild tha t m a kes you
sm ile”
2. Introductory question:
“ How d id you first d isc overed tha t your c hild ha s a hea ring loss. Sha re with us your
p ersona l exp erienc e.”
3. Transitional question:
“ Now tha t your c hild is d ia g nosed , fitted with hea ring a id s/ c oc hlea r im p la nt a nd you
a re p a rt of the ….. (intervention c enter), how is it going with you now?”
4. Key Questions:
•
“ Wha t is p a rents’ need s when the d ia gnosis of a hea ring loss is c a rried over
(wha t is c onsid ered a s the p itfa lls)?”
•
“ Wha t would you sa y a re p a rents’ sp ec ific need s for inform a tion when they
hea r their c hild ha s a hea ring loss?”
•
“ Wha t is p a rents need s for sup p ort a nd c ounseling when they’ ve hea rd their
c hild ha s a hea ring loss?”
•
“ How should p a rents c ontinua lly b e sup p orted a t ….. (intervention c enter)?”
5. Closing Questions:
•
Reflection question:
“ From everything we’ ve d isc ussed up to now, wha t would you c onsid er to b e
the g rea test need of p a rents with c hild ren with a hea ring loss?”
•
Summary question:
“ Did I sum up everything tha t we’ ve d isc ussed c orre c tly?”
•
Final question:
“ Is there a nything im p orta nt tha t we ha ven’ t ta lked a b out?”
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Byla e G
FOKUS GROEP BESPREKING
AFRIKAANSE FOKUS GROEP
F:
F:
As julle nou terugdink, hoe het julle uitgevind jou kind het ‘n gehoorverlies? Vertel bietjie vir ons
wa t wa s jou persoonlike erva ring da a rva n.
2:
2001, ….. he t ta a l op g etel, niks he t vir m y la a t a g te rko m ek sit m et ‘ n d ow e kind nie. Sy
ta a l w a s d a n d a a r. Ek het e end a g va n d ie w erk a f g ekom , e k het ….. g e roep , m a a r hy
het d oo d stil g esta a n. Ek he t iets la a t va l, m a a r hy he t stee d s d oo d stil g esta a n. Ek het
hom TV toe g eva t, d it klip ha rd a a ng e sit en enig e kind se rea ksie is tog o m na hulle o re te
g ryp . …… het ne t g esta a n. To e sê ek vir m y m a ek d ink hier is ‘ n p rob leem . Die volg e nd e
d a g he t ek hom na d ie huisd o kte r toe g e va t en hy ve rw ys m y toe na ‘ n oud iolo og en
d a a r he t sy fisies vir m y g e sê ….. het ‘ n g ehoo rp rob le em . To e is e k ve rw ys na …..
hosp ita a l toe en d a a rva nd a a n na d ie ….. (inte rvensie sentrum ). En d ie o orsa a k va n sy
g ehoo rverlie s is vir o ns a lm a l steed s onb eke nd . Hy wa s a m p e r 3 ja a r oud e n d it wa s ‘ n
helse skok. M y kind het ta a l en no u het hy ew eskielik a ls verlo or en hy w a s nie siek nie en
nie m a nd kon iets sê nie. Hy is d e ur toetse en to etse …
1:
Wa s julle b y g enetika ?
2:
Da a r is nie d o ofhe id in ons fa m ilie nie , niks nie .
1:
M y seuntjie is g e ne ties. Sy d o ofhe id is g eneties.
4:
Ons g a a n o ns m a a r la a t toets.
1:
Is julle e ne tjie ook g eneties va n a a rd ?
4:
Ons w eet nie.
Vertel bietjie vir ons va n julle erva ring met klein …..
5:
F:
Vir o ns wa s d it ‘ n b a ie ha rtsee r sto rie . O m ‘ n la ng storie ko rt te m a a k is d a t a lm a l vir o ns
g esê het d a a r is nie fout m et ….. nie .
Julle wa s bekommerd….?
5:
Ja , om d a t hy elke d a g b y m y m a b ly. M y m a kyk na sy nefie o ok, d ie tw ee tjies sp e el elke
d a g sa a m . To e b e l m y m a m y e end a g e n sê m a a r hiers d a n fout m et ….. Toe va t ons vir
….. na ‘ n g ehoorsentrum to e, to e sê hulle vir m y ne e, hulle ka n sie n d a a r is nie fo ut m et
hom nie . O ns p rob leem wa s ….. he t toe no g nie g ep ra a t nie , hy het nie eers een
wo ord jie , hy het niks g esê nie . Hy w a s so ja a r en sy ne fie kon toe a l b a b b e l. M a a r ….. is
ve rskriklik intellig ent. Toe va t ons hom g e ho orse ntrum toe en hulle sê d a a r is nie fo ut m et
ons kind nie, o ns m oet ho m nie d ruk nie, se untjies p ra a t la te r e n ons a a nva a r d it d a n so.
Ons m oet so na 3 ja a r oud te rug ko m en a s d a a r no g fo ut is, d a n w ee t ons nou d a a r is
fo ut. En toe soo s d ie liew e He er d it w il hê, g a a n ha a l ek hom ee n m id d a g d a a r in d ie
Pa a rl en ek sit hom in sy ka m er en hy sp eel en ek va t d ie leg o b lokkie s en e k g o oi d it
a g ter hom . Ek sie n hy sit ne t d a a r in d ie hoekie e n toe d a d elik d ie m id d a g m a a k ek ‘ n
a fsp ra a k b y ‘ n sp esia lis en hy verw ys m y toe na ……, d ie oud ioloog . Ag , toe hulle d ie
eerste toe tse d oe n, toe sê ek vir m y vrou d ie kind is d oo f. En d a a rna toe d oen hulle d ie
b reinsta m , toe m a a k hulle ho m a a n d ie sla a p . Hulle kon ong elukkig net d ie reg ter oo rtjie
d oen wa nt toe w ord hy w a kker. Toe sê hy (d ie o ud ioloo g ) vir ons m a a r d it w a t hy nou
sien b evestig d ie b reinsta m . En ek is ee rlik, d a a i m id d a g , (d it w a s ‘ n Vryd a g m id d a g ),
d a a i m id d a g het ek g e-“ c ra c k” . Tota a l e n a l g e-“ c ra c k” . O p p a d va n d ie oud iolo og tot
in d ie Pa a rl he t e k d ie heeltyd g ehuil. Ba ie d a e va t d it no g a a n ‘ n m a n, e k g lo nie m et ‘ n
d ow e kind jy sa l som m e r ew eskie lik reg ko m nie . Dit is a m p e r soo s ie m a nd wa t jy a a n d ie
d ood a fg esta a n he t. Ee nd a g is jy hier b o en d ie a nd er d a g is jy w ee r heel ond e r. To e
het ons d ie a p p a ra a tjie s g eko op en to e ko m ons we er sod a t hulle hom ka n m ee t. Toe
sê hulle vir o ns hy sa l noo it d ie sp ra a k ka n hoo r w a t ons p ra a t nie . Wa nt d ie a p p a ra a t
het ho m b a ie m o oi g e b ring va n 70 na o m tre nt so 55. Hy sa l no u w ys d a a r is ie m a nd b y
d ie d eur wa t klop of w a nnee r d ie ho nd b la f. En toe he t ons nou d ie im p la nting la a t
d oen en va n toe a f kon jy sie n ….. is ‘ n a nd e r kind . Dis “ a m a zing ” . Hy is tota a l en a l ‘ n
a nd er kind . Hy w a s voo r d ie a p p a ra te hip er-a ktie f, jy kon nie m et hom huis g ehou het
nie . Ek sê vir m y vro u hy het m y p a rty d a e so kw a a d g eha d e n d a n het e k ho m g esla a n
en g evra ho ekom luiste r jy nie vir Pa p p a nie? Na ek nou g ehoo r het hy’ s d oof, jy
b ena d e r hom he eltem a l o p ‘ n a nd e r m a nie r. M a a r hy het o ok m a a r so os e nig e a nd er
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kind “ ta ntrim s” en g oed . Dis m a a r m oe ilik om te ha ntee r. Wa nnee r sla a n jy e n w a nne er
nie ? So d it is nou in ‘ n neute d op ons situa sie . M a a r d it is ‘ n skok, skok, sko k, sko k, skok.
Va n d ie b e g in to t a a n d ie eind e . En ek d ink m y vro u va t d it erg e r a s ek.
F:
F:
4:
(huil ……)
1:
M a a r d it is g oed d a t sy huil. Jy m a g huil. Jy m oet huil. Sna a ksg e no eg , la a sja a r m e t d ie
kleintjies se m od e p a ra d e het ek ‘ n “ d ep ro” g e sla a n toe e k hoo r hoe d ie g ro ter kind e rs
p ra a t. Om te d ink m y kind sa l o ok so ka n p ra a t….
Nou da t jy a a n die gesels is, vertel ons va n jou erva ring.
1:
M yne w a s som m er net 3 d a e oud toe w eet ek a l. M e t d a a i g ehoo rto ets, d ie O AE in d ie
hosp ita a l.
3:
Toe ….. ‘ n b a b a w a s het hulle d it no g nie g ed oen nie.
1:
Toe het hulle vir m y g esê d a a r is fout. To e sê hulle m a a r hy ka n vog in sy o ortjies hê en
ons m oet oor 6 w eke w eer la a t to ets. Toe w ee t ons d a a r is fout en e k is to e ve rw ys na
…… (d ie o ud ioloo g ). Hulle he t d ie b reinsta m g ed o en e n o p 4 m a a nd e het hy a p p a ra te
g ekry. Hy he t g e lukkig nie ‘ n kog leêre im p la nting nod ig nie.
5:
M a a r a s ek no u m a a r ka n vra , d ie d a g toe hy g e b ore is, he t hulle hom d a d elik g etoets?
1:
Hy wa s 3 d a e o ud , net voor e k o ntsla a n is.
5:
Ek is tot ‘ n m a te, ek sa l nou nie verw yd te g ooi nie , m a a r kyk so os in ons g eva l, hy is
g eb o re in d ie ……. ho sp ita a l in ……. M y red e na sie is ne t d it help nie d ie p ed ia te r kyk net
d ie kind so, sien vo etjies is d a a r, 10 tone, wo ep s w a p s en a ls is re g nie . M a a k nie sa a k
wa a r nie , a s enig e kind g eb o re w ord , m o et d a a r to etse g ed oen w ord . En d a a i tyd ,
m a a r ek g lo ook d is hoe d ie Here se w il is en hy sta p ‘ n p a d m et ‘ n m a n en e k g lo ek
m oes no u se ker nie d a a i tyd d it g e w eet he t nie. As m ens d it d a a i tyd a l g e we et het, d it
ko n sovee l a nd erster g e we es het. M a a r nou m oet jy d ie hele p roses d eurm a a k, d ie hele
skok na 2 ja a r en ‘ n m a a nd .
…… vertel ons va n jou kind, …….
3:
….. is ‘ n 2000 g e b ore en o ns w a s ‘ n klom p vriend inne w a t sa a m b a b a s g eha d he t en
to e he t ek hom no u la te r b ie tjie b eg in verg e lyk m et d ie a nd er en ek wa s b ie tjie
b ekom m erd oor sy g ehoor. M y hele fa m ilie w ee t ek he t d it d ie he eltyd g esê . O ns het
ook g la d nie d o ofhe id a a n a lb e i va n ons se ka nte nie . M a a r ek w a s b e ko m m e rd ….. Ek
d ink d it is d a a i m o ed e rlike instink. Alm a l he t na tuurlik g e d ink e k is heel m a l. Die p ed ia ter
in Stelle nb osc h het g esê d a a r is g ee n fout m et m y kind nie . Sy resp onse wa s toeva llig en
ek he t g ew a g tot sy 6 m a a nd e ond e rsoe k. En ek o ntho u nog d ie p ed ia te r het d ie
ra te lto ets g ed oen en sy sê toe m a a r ….. se g e ho or is sw a k w a nt hy het nie g e re a g e er
nie ! Sy sê toe sy d ink nie hy is d oo f nie, w a nt hy het g oe ie b a la ns e n sit toe oo k a l. Da lk
het hy vog in sy ore . Toe b e l ek vir …… (w a t oo k 2 d o we kind e rs he t) en ek vra to e w a a r
het sy ha a r kind ers la a t toets. Ek va t hom toe na ….. (d ie oud io loo g ) toe . Sy toe ts to e en
sê d a a r is ‘ n b lo kka sie in sy ore , d a a r is vog in sy m id d elo re en ek va t hom toe na Dr……
to e (‘ n O or-, Neus- en Kee lsp esia lis). En so b eg in d it toe . Ek w a s seke r 20 keer b y d ie ONK
en d ie oud iolo og en m ens ra a k so vie s. M y m a n w a s ook vies d a t m e ns elke kee r m o et
te rug g a a n. Op d ie ou eind e w a s ….. ‘ n ja a r en 1 m a a nd toe hy sy g e ho ora p p a ra te
g ekry he t. Da a rd ie d a g m et d ie b re insta m , ek he t o p Wo rc este r g ro otg ew ord , so ek sien
to e ne t Del a Ba t ….. Sy ve rd uid elik toe vir m y d ie he le storie e n ek is toe in tra ne . M a a r
hy ho or g oed m e t sy a p p a ra te. Ek w a s oo k ha rtsee r, m a a r a s ek va nd a g te rug d ink, d is
‘ n fa se w a a rd eur m e ns m oe t w erk.
1:
Ek sê nou nie ek ra a k nie m ee r ha rtse er nie, m a a r m y d og tertjie he t ook b reinska d e
op g e d oe n en is ‘ n sp a stie se d ip lee g , m ens so u d it nooit kon sê nie. To e va t e k ha a r fisio
to e en to e b esef ek w a t is g e strem d . O ns kind e rs g a a n ‘ n norm a le lew e ka n lei, sa l na ‘ n
norm a le skoo l toe ka n g a a n. So troo s jou net d a a ra a n, ek we et d it is ha rtseer, jy m o et
d a a rd e ur g a a n, d is d e el va n d ie heling s-p ro ses. M a a r d a a r is soveel e rg er.
3:
En ….. he t oo k nie d o we intona sie nie, w a a roo r ek d a nkb a a r is. Aa nva nklik we et m e ns
m os nie w a t vir jou kind wa g nie en d it m a a k jo u ha rtse er. Jy w ee t nie hoe hy g a a n
p ra a t nie .
5:
M a a r sna a ks, w a t ek nou in hierd ie tyd jie b y ….. (inte rve nsie sentrum ) g eleer het. Ek
ond ervind d it b y a lle d ow e kind ertjie s, hulle is nie ska a m nie. M a a r soo s julle oo k no u sa l
we et, m e t 1 norm a le kind e n 1 d o w e, wa t ek ond ervind , lyk m y d ie lie w e Hee r het nou
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F:
F:
vir hom d o ofhe id g eg ee, m a a r in a nd er situa sies is hy b a ie sterk. Hy “ p erform ” net b eter
in ie ts a nd erste.
Dit bring ons sommer by ons volgende vra a g wa a roor ons bietjie ga a n gesels. Wa t sou julle sê is
ouers se spesifieke behoeftes a s dit kom by hoe die dia gnose va n ‘n gehoorverlies oorgedra
word. Met a nder woorde, hoe sou julle gra a g die dia gnose wou verneem en wa t is die besta a nde
leemtes?
2:
M y oud io loo g het so d ie nuus a a n m y oo rg ed ra : “ M a n, e k d ink jou b a b a tjie sit m et ‘ n
p rob le em , e k g a a n jou verwys na m ense w a t jo u verd er ka n help ” . Dit is nou
ka lm ere nd …. Ek wil hoo r w a t is d ie d ia g no se . Ek verw a g oo k na tuurlik d ie erg ste . ….. het
to e ‘ n e rg ere hoor p rob le em . Dit is nou Novem b er e n Desem b er (sko olva ka nsie) lê o m
d ie d ra a i en sy kon nie vir ‘ n a fsp ra a k kry b y d ie sp e sia lis nie. Ek sê toe m a a r d a n m a a k jy
nou b y iem a nd vir m y ‘ n a fsp ra a k, w a nt e lke d a g wa t ek nou m y kind ka n help is ‘ n
stukkie g oud .
1:
….. het o ok ‘ n m a g d o m b reinsta m m e g eha d w a nt hy het e lke keer w a kker g ew ord . Ek
het d ie hee ltyd g ew ee t d a a r is ‘ n p rob le em . M a a r d a a i d a g , 9 Ja nua rie toe sy (d ie
oud iolo og ) vir m y sê hy is d oo f o f he t ‘ n e rg e g e ho orverlies, he t e k m y b yna d oo d g e huil.
Ek he t b y d ie huis g e kom , ho m in sy ko t g a a n sit, na m y ka m er toe g eg a a n en e k het
g a a n huil. M a a r m a a k nie sa a k ho e d it oo rg ed ra w ord a a n jou nie, d it is sko kke nd .
5:
Wa t e k nou w el ka n sê to e ons no u b y ….. (d ie oud iolo og ) wa s, hy he t d it vir m y o p ‘ n
b a ie m o oi m a nier g esê. Wa t ek b a ie a d m iree r va n hom is d a t, w a t vir m y ‘ n g roo t skok
wa s, hy’ t vir o ns g esê: “ ……. en …….. (m a en p a ), ek w il no u vir julle iets reg uit sê en ek
wil no u nie d oekies om d ra a i nie , m a a r ….. het ‘ n b a ie b a ie hoë g rens va n d oo fhe id ” .
Soos in d ie o u ta a l so u m e ns sê hy is stokd o of. Toe sê hy vir ons op ‘ n b a ie m oo i m a nier:
“ Da a r is hoop . Da a r is b a ie hoo p en hulle vord e r b a ie m et sulke kind ertjie s. In d ie ee rste
p lek is d a a r g e ho ora p p a ra te en a s d it nie w erk nie, ‘ n kog leêre im p la nting ” . M a a r w a t
ek nou b a ie va n hom g e a d m iree r het, elke d a g na d a t ons nou d a a r w a s, het hy m y
g eb e l. Eerste d ing wa t hy g e sê het, a p p a ra a tjie s, d it ko s R30 000. Wa a r kra p jy nou
som m er vinnig R30 000 uit? Ek sê vir ho m , m a n, m a a r ek huil…… Vryd a g he t jy d ie R30
000, jy ka n d ie a p p a ra a tjies sola nk b estel. M a a r wa t e k nou b a ie a d m ire er, elke d a g het
hy g eb el, …… “ Hoe g a a n d it? Jy m o et vir m y sê a s d a a r fout is, e k help jou” . So d it w a s
vir m y ‘ n g roo t skok, m a a r a a n d ie a nd er ka nt w a s d it vir m y ‘ n vertroosting , d a a i ou d ink
elke d a g a a n ons. So d a a r ha a l e k nou e intlik m y hoe d vir ho m a f, ek he t nou a l b a ie
d ing etjies b y hom g ele er. Dit sa l ek no u “ like” a s iem a nd d it só d o en. Die p ro b lee m is
m ense sê no u d ie d ing en d a n is d it op d ie ta fel e n nou’ s jy o p jou eie. Ek d ink hulle w a t
d it o ord ra a a n jo u m o et sa a m m et jou d a a i p a a d jie sta p . M ens wo nd er nou wa t is d ie
p a d vorentoe? So e k d ink d a a r is d a lk ‘ n g roo t le em te b y hoe hulle d it oo rd ra .
Is da a r enige iema nd wa t nog hieroor iets wou byla s? Kom ons gesels da n oor die volgende
a spek wa t julle a l kla a r a a ngera a k het. Wa t sou julle sê is ouers se spesifieke behoeftes vir
inligting wa nneer hulle hoor hulle kind het ‘n gehoorverlies? Met a nder woorde, wa t presies wou
julle op da a rdie sta dium weet? Wa tter inligting wou julle by die oudioloog kry?
3:
Hoe lyk m y kind se to ekom s w a s m y e erste d ing .
1:
Vir m y wa s d it d ie o orsa a k. Ek w ou d a d elik w eet hoeko m is m y kind d o of.
4:
Ek d ink in d ie g eva l va n d ie g ehoorsentrum , ek g o oi nie verw yd te en klip p e nie. Hulle het
vir ons g e sê hy m a keer niks. As hulle g etwyfel het, hoe kom he t hulle nie g esê wa t is d ie
vo lg end e sta p nie?
5:
Hulle he t g esê ons m o et d ie kind ryp d ruk, e k sê d ie d a g vir d ie vro u: “ Da m e ek hoor w a t
jy sê, d is wa a r seuntjie s p ra a t la ter” . M a a r to e sê sy nog kom op 3 ja a r terug d a n sa l o ns
p resie s vir jo u ka n sê wa t fo ut is. No u m o et ek w ee r terug kom en d it is m e nse w a t
g ele erd is in d ie g o ed en ek d ink tog a s jy g ele er wo rd leer jy d a rem d ie b a siese g oe d ,
hoe ha nteer jy d ie m e nse. Wa t vir m y ne t b a ie kw a a d g e m a a k het is a s sy g etwyfel het
oor ……, d a n m oe s sy g e sê het, ek is nie ‘ n oud io loog nie . Wa nt d it help nie jy g oo i g oe d
in d ie lug en jy d ink g oed is m a a r so en so …
4:
Of kry d a n nog ‘ n o p inie, ek ve rw ys jou na ‘ n g ehoo rsentrum d a n hoo r jy wa t hulle sê.
Toe o ns d ie d erd e ke er te rug g a a n, to e d ring m y m a n a a n d a t ons ‘ n sp esia lis sie n.
5:
Da a r is ‘ n g roo t le em te vir m y, e k we et nie o f d it o ra ls so is nie, m a a r d a a r is tog ‘ n g ro ot
leem te .
4:
Hulle he t nie vir ons verte l hie r is ‘ n se ntrum in d ie Ka a p w a a r jy ka n g a a n vir b re insta m
to etse nie. As iem a nd tw yfe l, g a a n verd e r, hoe vroe ër, hoe b e te r….
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5:
F:
F:
F:
Vir m y d ie volg end e “ m a jor” b e ho efte vir inlig ting is fina nsie s. Julle a lm a l w ee t self
hoe veel ko s g o ed . Da nk d ie liew e Va d er ons m e d ie se fond s he t a lles b eta a l. M a a r ek sê
b a ie a a nd e vir m y vrou a s o ns g od sd iens hou, w a t va n d ie a nd er p a ’ s en m a ’ s w ie se
kind e rtjies a p p a ra te of inp la nting s m oe t kry - d it kos a lle s g eld en a l d ie m e d iese fond se
b eta a l d it nie. Da n w il e k hê d ie ou w a t d it vir m y o ord ra m oet vir jou b ietjie ra a d en
wysheid g ee e n oo k d a re m b eg rip . Wa nt R30 000 of R140 000 is nie ‘ n g ra p nie . Dit is so
g root skok, d it is sko k o p skok. Hulle sê jo u kind is d oo f, d ie vo lg e nd e skok d ie fina nsiële
ko m p lika sie s- w a t is d ie vo lg e nd e p rose d ure en d ie p rosed ure d a a rna ? Ten op sig te va n
ke nnis en ten op sig te va n m ed iese uitg a we s m o et hulle vir jou b a ie m ee r inlig ting g ee.
Dit wil vir my voorkom a sof leiding met die fina nsies regtig vir julle ‘n behoefte is. Wil iema nd nog
iets byvoeg met betrekking tot behoeftes vir inligting? …… Volgende wil ek vir julle vra , wa t sou
julle sê is ouers se behoeftes vir bera ding en ondersteuning wa nneer hulle hoor va n hulle kind se
gehoorverlies? Hoe wil ouers ondersteun word? Wa t is of wa s julle spesifieke behoeftes?
2:
Ek het fisies vir m y fa m ilie g esê, d it is m y kind en ek g a a n “ d e a l” m et d ie p rob le em . Ho e
julle g a a n “ d ea l” m et hierd ie p rob le em is nie m y sa a k nie . Al wa t ek va n julle vra , m o et
nie m y o f m y kind b e ja m m er nie , wa nt ek b e ja m m e r nie m yself nie. Wa nt a s e k vir m yself
g a a n b eja m m er, g a a n e k m y kind elke ke er ja m m er kry en w a a rop g a a n d it a fstuur? Ek
b eha nd el vir ….. soos e nig e a nd er norm a le kind . Ek het vred e g em a a k m et d ie
p rob le em w a t hy het. Hy g a a n m e t d ie p rob le em sit vir d ie res va n sy lew e en e k g a a n
hom ond ersteun sovee l a s w a t ek ka n. En a s ek d ie d a g nie m eer d a a r is nie, m o et hy o p
sy eie 2 b e ne ka n sta a n.
3:
Ek m o et sê ek het no g a l vold o end e o nd e rsteuning g e kry b y ….. (O ue rle id ing s-tera p eut)
hie r b y O ue rleid ing .
5:
Va n m y en m y vrou se ka nt a f m o et ek sê o or d ie o nd e rsteuning - ons 2 m oet a lb e i fisies
we rk. Wa t ons p rob le em is en w a a ra a n ek so b a ie d ink, a s jou kind b y ‘ n se ntrum soos
d ie ….. (intervensie sentrum ) is en d ie m a n en vrou m oe t a lb ei w erk, d a n ve rw a g e k d a t
iem a nd va n hie r a f na d ie w erks-m e nse o f b esig hed e toe m oe t g a a n e n d ie situa sie
g a a n verd uid e lik d a t ‘ n d ow e kind Ouerleid ing en tera p ie m o et kry. Jy m oe t b y jou
we rkg ew er ‘ n vla k va n ond ersteuning kwe ek, w a nt ek vind b y o ns hulle is to g
ond ersteunend , m a a r sa l p a rty d a e vra o f hierd ie g oed w erklik nod ig is? M ense
ve rsta a n nie, en m e t jou kind ook- hulle ve rwa g w ond e rw erke . As hulle vra : “ Pra a t jou
kind a l?” , d a n w il e k d e ur d ie d a k klim ! Da a r m o et ‘ n verteenw oord ig er na we rke toe
g a a n, w a nt m ense sie n d ie d ing e nie in nie….
3:
Aa n d ie b e g in in ons situa sie, he t a lm a l in d ie fa m ilie g esê ons m o enie “ wo rry” nie, hulle
sa l help . M a a r la ter g a a n a lm a l ne t a a n m e t hulle eie d ing etjie s. Jy m oe t le er om o p jou
eie te “ c op e ” - d is m a a r net ho e d it w erk…
2:
Oe, e n ek ha a t d ie wo rd : “ Ag , Sha m e…” ! Ek verp es d it!
3:
Ek w a s a a n d ie b eg in oo k b a ie lig g era a k d a a roo r. Me nse is net oning elig . M a a r oo r d ie
ond ersteuning , ek so u sê ek is nou op d a a rd ie p unt d a t ek reg tig sa l vra a s ek hulp of
ond ersteuning nod ig het. Ek d ink o ok hierd ie b ehoeftes ve ra nd e r m a a r oo r d ie tyd
hee n?
En ……, wa t sou jy sê is ouers se behoeftes spesifiek vir bera ding en ondersteuning?
4:
Ek o nthou, ons w a s seke r so ha lf uur b y d ie huis na …... se to etse , to e het ‘ n g oeie
vrie nd in va n m y….. (huil……). Die ond erste uning w a t a lm a l a a n d ie b eg in g eg ee het is
nou nie m e er d a a r nie (huil ……).
5:
Iem a nd w a t nie se lf in d ie situa sie is nie , ve rg eet en ve rsta a n nie w a a roo r d it g a a n nie.
Dit sa l ‘ n b a ie g oeie d ing w ees o m m et a nd e r ouers te ka n p ra a t, so os nou. Wa nt o ns
a lm a l w eet m os wa a rd eur o ns g a a n. Byvoo rb ee ld julle w a t nou a l b ietjie ouer kind e rs
het, julle ka n vir ons sê , to em a a r jy g a a n ee nd a g ‘ n sta d ium b e re ik d a t jy só of só g a a n
vo el.
3:
Ja , m ense w a t a l ‘ n la ng er p a d g e sta p het e n w a t p o sitief is. M ense w ie se kind e rs
p ra a t…
2:
Ai, a s jou kind d a rem d ie d a g b y d ie huis kom en hy sê ‘ n nuw e w oo rd , d it is w ond erlik!
5:
Ja ne e, ons sm a g nog d a a rna !
……, en wa t va n jou?
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1:
5:
F:
F:
F:
Ek d ink ook ek is o p d a a rd ie sta d ium d a t a s ek iets w il we et of b ietjie ond erste uning
nod ig he t, d a t ek d a a rvoor sa l vra , m a a r 4 he t d e finitief no g o nd ersteuning op hierd ie
sta d ium no d ig . Ek d ink d it is so b ela ng rik o m te ka n p ra a t m et a nd er ouers. M a a r 4, d a a r
g a a n no g ‘ n sta d ium ko m d a t jy g a a n rustig ra a g oor a l hierd ie d ing e.
Ek d ink d ie p a ’ s erva a r ‘ n d ow e kind ‘ n b ietjie a nd e rs a s d ie m a ’ s. Wa nt d it is m a a r vir
enig e m a ‘ n g ro ot skok. Enig e d e fe k b y ‘ n kind ….. Die m a m oet eintlik ‘ n b ietjie m e er
te ra p ie kry so u ek sê?
3:
Ek o ntho u m y m a n, ek w ee t nie o f hy ‘ n a nd er m a nie r het- o f hy op sy eie g a a n en g a a n
tra ne stort het, m a a r vo or m y he t hy nog nooit g ehuil nie. To e ek so vreeslik g ehuil het,
het hy net g esê: “ Ons g a a n hie rd ie d ing w en” . Ek d ink d is m a a r ‘ n m a nne-d ing en d is vir
hulle m o eilike r om hulle em o sies te w ys. M y m a n het m y ne t g etro os en d a n we er
a a ng eg a a n.
5:
Ek d ink d ie een d ra d ie a nd er een. Die te ra p ie op d ie vrou m oet m ee r w ee s a s vir d ie
m a n, w a nt ek d ink d is m a a r vir e nig e vrou ‘ n g root sko k…
2:
Ek is no g ‘ n enkel o ue r w a t m a a k d a t ek no g sw a a rd er d ra .
3:
Da n juis he t m ens jou fa m ilie nod ig ? M e ns se fa m ilie sta a n a g ter jo u, m a a r eintlik ka n
hulle jou nie d ie tip e ra a d e n b ysta nd g ee w a t a nd er m ense in d ieselfd e b ootjie vir jou
ka n g ee nie.
1:
As ek d it ka n o p so m sou ek sê d a a r is 3: p ro fe ssionele m e nse, twe ed e ns a nd er ouers en
d erd e ns jou fa m ilie. M e ns he t a l d a a rd ie fa sette va n ond ersteuning no d ig .
Om op te som, wa t sou julle sê is ouers se enkele grootste behoefte a s dit by ondersteuning kom?
3:
M y g rootste b ehoefte w a s o m te kon p ra a t m et iem a nd o or a l hierd ie d ing e. En d a n o or
klein ….., d efinitief sy sp ra a k, w a nt vir m y is d ie g root d ing d a t m y kind in ‘ n hoofstroo m
skoo l sa l ka n ing a a n en d a n m oe t ka n “ c op e ” . Da a rvo or is e k b a ng w a nt e k w ee t nie
hoe hy g a a n d oe n a s hy d a a r kom nie . En d a n o ok ho e g a a n d ie d ruk o p ons a s o ue rs
we es? Wa t g a a n va n m y verw a g wo rd ? Ga a n jy ure sa a m m et jou kind m o et
sp a nd e er? Ek is m a a r skrikke rig ….
1:
Dis d a lk no u heeltem a l va n d ie p unt a f, m a a r a a n d ie b eg in w a s e k ska a m vir m y kind
en ek w ou nie hê m e nse m oes sy a p p a ra te sie n nie. As ek winkel toe g a a n, he t ek d it
uitg e ha a l, wa nt d a n ka n d ie m ense m os sien m y kind is d oo f e n ek w il nie hê hulle m o et
we et nie . M a a r d it m a g m os nie m e er ‘ n “ issue” w ees nie ?
5:
M y g ro otste d ing , en e k sukke l no g ‘ n b ietjie d a a rm ee, is a s volg . Wa t so sa a m m e t d ie
skok g eko m het- jy het so b a ie tra p p e g em a a k toe …… g eb o re is. Jy wil hê hy m o et
g oe d va a r op sko ol, hy m o et d a rem sy m a e n p a se g o ed b ereik w a t ons b e re ik het.
M a a r va nd a g is m y “ m a in” d ing ne t d a t ….. m o et ka n p ra a t en g oe d ka n ko m m unike er.
En d a n te n m inste om sko ol g oed te ka n kla a rm a a k. Dit is nou m y g roo tste hoop en
ve rw a g ting . Verd e r “ w orry” e k nie, hy hoe f nou nie uit te b link in e nig e iets a nd ers nie,
net d a a i b a siese d ing om te ka n p ra a t en om so os ‘ n g ew one kind d e ur d ie lew e te ka n
g a a n – d it is m y g roo tste b e hoe fte .
3:
Ek wa s so b a ng m y kind g a a n sna a ks p ra a t e n d a n is hy ha lf ‘ n b e sp o tting vir a nd er
kind e rs….
5:
Dit is m o s m a a r jo u w ese, jy is eend a g hie r b o en e end a g w ee r hee l ond er. Dit sa l no oit
som m er ne t so kla p s e n a ls is reg w ee s nie. Dit g a a n in d ie skoo l ook g eb e ur en ek we et
….. g a a n e end a g b y d ie huis kom e n sê d ié kind he t vir ho m sò g e sê ten op sig te va n sy
g ehoo rp ro b lee m . Dit is m a a r ‘ n m oeilike storie …..
Ons tyd is verby en ons sluit a f. In ‘n neutedop, a s julle terugkyk: julle persoonlike ra a d a a n a nder
ouers?
1:
Hou m oe d , d it ra a k m a klike r ….
3:
Dit ra a k d efinitie f b eter, d a a r is ho op .
5:
M y ra a d a a n ouers w a t m oet b esluit o m kind e rs te hê , a s d ie kind jie g e b ore w ord , d oen
m a a r d a a i d a g d ie m o eite, la a t toe ts ho m . M oe t noo it m et d ie e erste a ntw oord tevred e
we es nie, g a a n so ek liew e r nog . M e t enig e p ro b le em , lee rp ro b lem e of iets, g a a n kry ‘ n
a nd er op inie e n ‘ n g ro ter g ehee lb ee ld . Dit het ek nou g eleer.
(Sa meva tting en beda nking)
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FOCUS GROUP DISCUSSION
ENGLISH FOCUS GROUP
F:
How d id you first d isc over tha t your c hild ha s a hea ring lo ss? Sha re w ith us in short yo ur p e rsona l
exp e rie nc e.
1:
….. w a s p rem a ture, b orn a t 6 m onths a nd 1 w ee k. De a th a nd life situa tion. With Go d ’ s
help w e b oth m a d e it. ….. w a s in ho sp ita l for a b out 10 w eeks, 3 o r 4 serious b a c te ria l
infec tio ns. So tha t is why he is m y m ira c le b a b y, I c a n’ t ta lk eno ug h a b o ut tha t. I w a s
p rep a re d for a nything w orse …. Blind ness, p a ra lysis, a nything ….. I think G od w a s
p rep a ring m e b efore ha nd for w ha t w a s lying a hea d . We d o n’ t kno w w ha t wa s the
c a use , I think in his c a se it w a s the m ed ic a tion a s w ell a s b eing a p rem a ture b a b y. I’ ve
a c c e p ted the fa c t tha t this wa s the c a use, w ell, the m e d ic a tion sa ved his life. I d id a te st
a t hom e fo r his hea ring , I a sked the d oc to r w ha t is the sid e effec ts o f p re m a ture b a b ies
a nd I c a m e ho m e the d a y a fter visiting the p e d ia tric ia n. I stood b ehind ….. a nd
c la p p ed m y ha nd s. So the funny thing a b out the se c hild ren, they inte ra c t a nd yo u d on’ t
know w hethe r the y c a n hea r or not. I told m y husb a nd there w a s so m ething wro ng . I
p ho ne m y frie nd (who a lso ha s a c hild w ith a he a ring lo ss) fo r a num b er o f a n
a ud iolo g ist a nd g ot a n a p p ointm e nt fo r 2 we eks la te r. I we nt to ….. (the Aud iolo g ist), a
ve ry sw ee t m a n, very sensitive, a sking m e ho w d id I fee l a b out this issue. I sa id to him
there’ s nothing w rong , b ut w ha t c a n w e d o a b out this? Wha t is the ne xt step ? M y
husb a nd wo uld sa y tha t I a m so ha rd . Wha t c a n I d o to help m y son to hea r? I w a s
a lrea d y in the next step , m y tra um a w a s 10 w ee ks b efo re this ha p p ened . To m e this w a s
a sm a ll b lessing . So he’ s g ot a d isa b ility, not a lia b ility. Tha t to m e w a s sta nd ing o ut.
Tha t’ s how I loo k a t ….. w ith tha t.
2:
M y c hild ….. w a s o nly one m o nth p re m a ture . She w a s in ho sp ita l for a m o nth a nd a t the
end o f tha t m onth they d id the he a ring test in the hosp ita l, whic h a t tha t p oint in tim e
ha d no resp onse. The exp la na tio n w a s tha t just like m a ny othe r p re m s she ha s fluid in her
ea rs a nd let’ s follo w tha t up la ter o n. The re w a s no sec ond tho ug ht a b o ut tha t. The
p ed ia tric ia ns rea c te d a s if d ea fness ne ver existe d . And the n, b e ing a se c ond -tim e m o m ,
I rea lize d tha t her re sp onses w e re c om p letely d iffe rent, a lthoug h it wa s c o nfusing ,
b ec a use she ha d o ne b etter ea r- she w ould hea r lo ud c la p s c lo se to her, b ut she
wo uld n’ t resp ond a t a ll to o ther so und s…. And the n a t 4 m onths o ld , b e c a use she w a s in
a nd out o f ho sp ita l, I just d id n’ t ha ve the c o ura g e to d e a l w ith the d ea fne ss, b e c a use
there w ere so m a ny o ther thing s. And fina lly in Ja nua ry I ta c kled this b e c a use it’ s a new
ye a r a nd the n the a ud io log ist c onfirm e d the d ea fness, w hic h I think still c om e a s a b ig
shoc k to m e - you kno w it, b ut d enia l is a n a m a zing tool, it’ s not tha t b a d . But life g oe s on
a nd the fa c t tha t the a ud io log ist to ld m e a b out ….. (intervention c ente r), you re a lize it is
not the end of the w orld . You g et hea ring a id s. You c a n d o som e thing a b out it, in
c om p a riso n to som e one w ho is p a ra lyzed a nd yo u c a n’ t d o a nything a b out it. The
m om e nt I’ ve hea rd the y d on’ t ha ve to g o into sig n-la ng ua g e a nd tha t they c a n sp e a k,
it w a s fine a nd not suc h a b ig d e a l. Le t’ s m ove o n w ith life. So rig ht now , w ha t the
d ea fness is c onc e rned , it’ s the o nly thing tha t m a kes m e feel rea lly g o od a b o ut …… I
know fro m m y sid e I a m d oing eve ry sing le thing I c a n. I’ m a t the rig ht p la c e a nd w e d o
a s m uc h a s w e c a n. So it’ s a to ug h b lo w, b ut it’ s som ething you c a n overc om e.
3:
….. w a s b orn o n 40 w e eks o n the d ot, b ut a n em e rg enc y c a esa ria n. They ha d to tra nsfer
her to Pa nora m a ’ s NICU for 2 w ee ks. The p ed ia tric ia n keep o n te lling m e she w a s not
g oing to m a ke it, b ut then she p ro ofed everyb o d y w rong . The d a y she w a s d ue to b e
d isc ha rg ed from NICU they d id the hea ring te st a nd she d id n’ t p a ss. They sa id c om e
b a c k b e c a use there is a c ha nc e tha t there c ould b e fluid in the ea rs, so in 6 we eks tim e I
we nt b a c k. I d id n’ t tell a nyone, just keep ing it to m yse lf, b ut I w a s wa tc hing her a nd she
wa sn’ t re sp ond ing tha t m uc h. She is m y first c hild , I d id n’ t kno w, b ut in m y m ind I knew ….
At 6 we eks w e w ent b a c k a nd the y d id the sa m e sc re ening test, w hic h she d id n’ t p a ss.
And then they d id the slee p te st, so it w a s c onfirm ed w he n she w a s 6 w eeks a nd 2 d a ys
old . I w a s q uite d e va sta ted , w o rrying a lso a b out wha t else c ould b e w ro ng . When I
c a m e to ….. (interventio n c ente r) a nd sa w the kid s running a round a nd ta lking with
hea ring a id s o n – tha t w a s g o od . Bec a use w ha t yo u see is the d e a fne ss a nd sig n
la ng ua g e. And a t 8 w eeks w e w ere a t ….. (interventio n c e nter) a nd now thinking a b o ut
everything else tha t c o uld ha ve g one w ro ng , tec hnic a lly she w a sn’ t sup p ose to m a ke it,
so d e a ling w ith d e a fne ss in tha t sense w a s ea sier.
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F:
F:
4:
M y b a b y, ….., w a s b o rn like the size of a p enc il, he wa s just m ore tha n 500g . Whe n a fter
6 m o nths he c a m e hom e, he wa s like a little c hoc o la te, he just sa t the re …. You look a t
him a nd a m other’ s intuition…. you just kno w tha t there w a s som e thing …. I w e nt to a
neurolo g ist first a nd he c o nfirm e d the d ea fness. M y initia l resp onse w a s: is he g oing to
hea r m e sp e a k? Yo ur m ind w a nd ers…. As soo n a s I c a m e in c onta c t with the …..
(interve ntio n c ente r), tha t’ s when the re w a s a ra d ic a l shift. I ha d a ve ry g oo d
exp e rie nc e a nd I c a rry on. One nee d s honesty.
2:
Initia lly you think wo rst c a se sc ena rio, you think yo ur c hild is g o ing to b e a soc ia l outc a st.
This p oor c hild will never b e a b le to d o a thletic s, she w on’ t he a r the g un…. I live d life
a nd this is how im p orta nt hea ring w a s. And now she w ould n’ t b e a b le to d o a nything .
Tha t w a s m y first sort o f first p a nic a tta c k….
4:
Be fo re you g a ther info rm a tio n a nd b efore yo u d o a nything , your m ind w a nd ers like
when he is running into the sea , will he he a r w hen som e one c a lls him to sto p ? You d o
think a b out the se thing s, b ut yo u very q uic kly g et o ver tha t a nd you re la x. Yo u c a rry on
so tha t yo ur c hild c a n rea c h his a c tua l p otentia l.
3:
….. (inte rve ntio n c ente r) turned m e a round when I w a s feeling it w a s the e nd of the
wo rld . Now yo u d o thing s d iffe re ntly a nd thing s a re a little b it m ore wo rk….
And ……, la st but not the lea st, tell us a bout ……
5:
….. w a s b o rn a nd wa s in NICU fo r 2 m onths. They d id n’ t know wha t w a s wro ng w ith him .
But he w a s re a lly ill. He ha d 2 m a jor o p era tions a t o nly 2 m onths old . Every tim e w e sa w a
d oc to r, I tho ug ht everything is g oing to b e a ll rig ht, a nd then it w a s a c tua lly no t. The p a st
3 yea rs I a m rid ing hig h b ec a use he ha ve n’ t ha d a ny op e ra tions! He is turning 6 no w. He
wa s sta rting a t ….. (interventio n c e nter) a lm o st sim ulta ne ous w he n w e found o ut tha t he
wa s d ea f. The re a so n I found out w a s tha t he never re a lly sa id “ M om m y” . We w ere just
so g ra teful tha t he wa s a live – he wa s so re sp o nsive. But with a lot of c lose tim e I’ ve
sp e nd w ith him , I rea lized he w a sn’ t p ic king up everything , b e c a use he is se ve rely
hea ring im p a ired , no t p rofo und ly. We then w ent for the sleep test a nd the hea ring loss
wa s c onfirm ed . At tha t tim e the re w a s so m uc h e lse ha p p ening tha t the d ea fness
wa sn’ t the m o st im p o rta nt thing . He g ot his he a ring a id s a t …… (the a ud io log ist) a nd she
(the a ud iolo g ist) w a s lovely, she w a s g e ntle a nd a t the sa m e tim e ve ry p rofe ssiona l. The
intera c tio n a t ….. (inte rve ntio n c e nter) a nd the fa c t tha t he ha s a n a m a zing g o d m other
a nd –fa the r help e d a lo t. And then his la ng ua g e is p he no m ena l…. And a ll o f you w ho
still ha ve yo ung c hild ren, it’ s still a long wa y to g o . Pa rt o f m y journe y is a c c ep ting tha t I
c a nno t a lw a ys b e there for him a nd I ha ve to let him g o…. I a lso ha ve to a c kno w led g e
tha t e very tim e I think I’ ve d ea lt with everything , I re a lize d I ha ve n’ t. It is a long p roc ess.
And it is a b out lea rning a nd b eing ho ne st with ourselves a nd our c hild re n, No w ….. a nd I
ta lk a b out wha t is he a ring a nd I te ll him tha t w hen you ta ke yo ur a id s o ut, yo u c a nnot
hea r, b ut I (M om m y) c a n hea r. Yo u ha ve to tea c h the m a lo ve fo r hea ring a nd a lo ve
fo r the ir hea ring a id s. It ha s b een a n inc re d ib le le a rning p ro c ess. But a t the m om ent just
to g ive you a ll hop e , ….. is just ta king o ff w ith lea rning to rea d a nd write. It’ s b ee n a he c k
of a p roc ess, b ut yo u just ta ke o ne sm a ll step a t a tim e. There is tim es when I fee l
c om p letely c onfuse d w ond ering w ha t to d o – a nd then I sit d ow n a nd re a lize , it w ill
c om e …. Som etim e s o ther p rofessio na ls is g etting m ore a nxio us tha n I a m , b ut then
a g a in, we ta ke thing s a t his p a c e . Le t’ s e nc o ura g e a nd m otiva te , b ut no t p ush. He still
g ets a lot of ea r infe c tions, ha ving o ne a id in a nd one a id out, b ut w e ha ve b e e ta ug ht
how to d e a l w ith tha t…..
3:
Som ething yo u sa id tha t strikes hom e is tha t you c a n neve r sa y tha t yo u’ ve d ea lt w ith it,
we c a n still se e tha t it is still e m otiona l for you…. And here I a m w ith m y e ye s full o f tea rs.
Som etim e s I strug g le to c la ssify m y te a rs, the re w ill a lw a ys b e the e m otion……
Moving to our next question linking onto a ll tha t’s been sa id so fa r. Wha t would you sa y a re
pa rents’ needs when the dia gnosis of a hea ring loss is conveyed? Wha t would you consider to be
the pitfa lls, looking ba ck a t your own experience?
4:
I felt m y need s we re m e t, I re a lly d o. I think here a t ….. (intervention c e nter) they to ok
c ontro l of the w hole situa tio n a nd the y g a ve m e a fe eling of sta b ility.
5:
M y a ud io log ist w a sn’ t ve ry em o tio na l, so m uc h so tha t I c o uld n’ t even re m em b er her
surna m e a nd it w a s no t he r offe ring m e a nything . She just d ia g no se d ….. a nd d id n’ t
c onta in m e a t a ll.
2:
I think tha t m o m ent in tha t ro om w he n you he a r it, d ifferent a ud iolog ists w ill d e a l
d iffe rently in te rm s of their o wn p ersona lities. But to m e the m ost im p o rta nt thing w a s ha lf
m et b ut c o uld d efinite ly b e b e tte re d . Tha t wa s m y extrem e nee d for info rm a tion. I d id n’ t
c a re if it w a s 10 files o f rea d ing w ork, I w ould ha ve g one throug h it tha t nig ht – tha t is
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wha t yo u need . I m e a n, e ven if it is a list o f e ve ry sing le d e a f sc hoo l in So uth Afric a , then
tha t b e it. Ac tua lly thinking a b out it, I wo uld like to ha ve it. I d o n’ t ha ve tha t. Bec a use so
m uc h g o throug h your m ind . I m ea n e ven w ith ….. (interventio n c e nter), the first thing ,
where d o I live? Do I ha ve to m ove? We a re luc ky tha t w e live in Ca p e Tow n. Dea f
Sc hools, d ifferent a p p roa c he s, a ud itory a p p ro a c h…. Never hea rd a b out it. I think if
yo u’ ve b ee n g iven tha t inform a tion rig ht there a nd then, just g o a nd re a d . And I know
we a ll d o thing s d iffere ntly, b ut to m e, just g ive m e info rm a tion….. le t m e find out m o re.
The m ore yo u know a b out it, the m ore yo u c a n find a wa y of d ea ling w ith it. So I think
inform a tio n…… so ve ry im p o rta nt. I w a s luc ky b e ing se nt into the d irec tio n of the …..
(interve ntio n c ente r) a nd tha t is g oo d a nd b a d , b ec a use the n yo u ne ve r kno w, w a s
there m a yb e som e thing e lse ? It is na tura l for p a rents to w a nt to know a m I a t the b e st
p la c e fo r m y c hild . Wha t is a ll a va ila b le out there? Where d o yo u sta rt? If m y a ud iolog ist
ha ve n’ t told m e a b out it….? Wo uld o ne g o to the Ye llow Pa g es? You a re so hop e lessly
lost w he n you g e t tha t new s…. Where is w ha t a nd w ha t d o you d o?
3:
Whe n I wa s in hosp ita l a nd the y d id the te st in NICU, w ell for a sta rt the nurses c a m e to
m e sa ying , w ell yo ur c hild fa ile d the hea ring test…. We ll a t tha t sta g e I d id n’ t think it w a s
d ea lt w ith c orrec tly. With the sc ree ning in the hosp ita ls it is very im p o rta nt ho w it is
c onveyed . The a ud iolo g ist d id n’ t ta ke the tim e to c o m e a nd sp e a k to m e herse lf. She
wa s there a nd tha t to m e w a s p oo r ta ste . At 6 w eeks w e w ent b a c k, I d id n’ t rea lly like
the a p p ro a c h, b ec a use it w a s a c a se of ta king the b a b y a nd m a ke it a sle ep . She w a s
only 6 w eeks old a nd d id n’ t w a nt to slee p . I just d id n’ t c onnec t to the a ud iolog ist a t a ll. I
fo und tha t she w a s no t re a lly sym p a thetic to wa rd s the fa c t tha t it wa s re a lly a young
b a b y. Her a p p ro a c h wa s w e no w ha ve to wa it for a m onth a nd I d on’ t wa nt to w a it for
a m onth….. She wa s rea lly like a b rup t. To p a re nts – you c a nnot let them wa it for a m onth
to g e t it c onfirm ed . And then it w a s just your c hild is d ea f with no info rm a tion, a nd I w ill
see yo u a g a in in a m onth ….. It w a s a c a se of just d ea l w ith it. The re c o uld ha ve b e en a
little b it m o re c o m p a ssio n. Sp e a k to som e one a b o ut tha t g rie f a nd tha t it d o esn’ t just g o
a wa y. The p e d ia tric ia n the n referred us to som eo ne else . He (the other a ud iolo g ist) w a s
p he no m ena l. Everything tha t frustra te d m e , w a s now tota lly o p p osite. “ Ho w a re you
d oing M o m m y?” I found tha t to b e very g oo d . He p honed ….. (inte rve ntion c e nter)
while w e w ere there, sa ying he’ s g o t a new m om a nd d a d , the soo ne r they c a n se e you
the b etter. So w e we re here very q uic kly. We ha d 1 or 2 se ssions b efore ….. eve n ha d
her he a ring a id s. So fo r a ud iolo g ists, the y a re no t a c tua lly d e a ling w ith the c hild , b ut
d ea ling w ith the p a rents. They d on’ t ne ed to b e c ounselo rs. The y just need to re c og nize
tha t yo u a re in a ve ry b a d p la c e.
2.
Eve n if they fo r exa m p le g e t p erm ission from othe r p a rents who ha s g one throug h the
sa m e , just g iving yo u a tele p hone num b e r of a p a rent who ha s just rec ently b een
throug h it. So m ething a s sim p le a s tha t w ould ha ve m a d e the wo rld ’ s d ifferenc e for
som e one w ho ha s g o t the ne ed , b ut just d on’ t kno w w hic h d irec tio n.
4.
The neurolo g ist g a ve us the d ia g no sis. I just wa nted honesty - som eo ne sa ying this is it. I
wa nt to know . The Aud io log ist w ent to w rite d ow n a ll the im p o rta nt inform a tion. And I
ha ve to sa y, rela tive ly sp ea king , liste ning to a ll of you, I think m y exp e rienc e w a s a very
g uid ed one…. A lot o f p e op le help ed m e a nd there w a s a lot of sup p o rt. M y fa m ily a s
we ll a s the a ud iolog ist wa s p he nom ena l. They g a ve the info tha t I nee d ed a nd they
we re ho ne st with m e.
3.
One thing I fo und w ith the m ed ic a l p rofessio n in a w hole, they a lw a ys ta ke the m o re
neg a tive a p p roa c h tha n the m ore p ositive a p p roa c h. I a lso found the first a ud iolog ist
we w ere d ea ling with very neg a tive in he r outlo ok. M a yb e b ec a use she knew ……’ s
histo ry a nd a ll the o ther thing s tha t w ere w rong , where a s the se c o nd a ud io log ist d id n’ t
know m uc h a b out he r histo ry, b ut w ere m uc h m ore op tim istic a b out wha t her future
wo uld b e like. I d o no t sa y she sho uld b e p e rfec t, b ut he wa s m uc h m ore op tim istic a nd I
a p p rec ia ted his o p tim ism .
5.
To m e it’ s a b out hone sty a nd em p a thy a nd the inform a tio n. Where fro m here ? Is the re
g oing to b e sup p o rt? It a c tua lly seem s tha t ….. (intervention c e nter) ha s d o ne tha t,
m ore tha n the a ud iolo g ist.
1.
In m y c a se , I a m a ve ry inq uisitive p erson. I ha d a nother p a rent a s a friend who kno ws
a b out e ve rything . She g a ve m e the num b e r of ….. (inte rve ntion c enter) a nd a lso
p rep a re d m e. The a ud iolog ist w a s ve ry sym p a thetic , b ut to m e it w a s not a b o ut
sym p a thy, b ut honesty. Som ething I ha d to d e a l with w a s sa ying to m y husb a nd : ….. is
d ea f. We c om e from d ifferent b a c kg round s. He a lw a ys sa ys I a m very ha rd . I w ill d e a l
with it b ut there is no tim e to wa ist. I ha d to g e t m y husb a nd throug h his d enia l to g et
him q uic k, q uic k, q uic k where I a m . The a ud iolo g ist w a s ve ry sym p a the tic , he exp la ine d
to m e the w hole thing . I d id n’ t und ersta nd a thing a b out d e c ib e l a nd I a m still
c onfused … But eventua lly I no w c a n e xp la in to a norm a l p erso n w ha t it is a ll a b o ut. M y
c onc e rn w a s a b o ut hea ring a id s, b e c a use a t tha t sta g e w e ha d the se hug e hosp ita l
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F:
b ills. To m e the d ia g nosis wa s nothing , m a yb e I d id n’ t ha ve the feeling a t tha t sta g e. I
think it is a ll a b out inform a tion b eing rea d y a nd a va ila b le a nd ha ving p a rents a va ila b le
tha t yo u c a n sp ea k to. It is c o m fo rting to know there’ s a nother p a rent you c a n sp e a k to
who a re in the sa m e b oa t.
Wha t would you sa y a re pa rent’s specific needs for informa tion when they hea r tha t their child ha s
a hea ring loss? I other words, wha t exa ctly did you wa nt to know a t tha t sta ge?
2:
I think the first thing is tha t so m eb od y rea lly m a kes you sit d o wn, b ec a use I m e a n yo u’ ve
b een knoc ke d with a b om b or a c tua lly step p ed on a la nd m ine. Som eone e xp la ining to
yo u exa c tly w ha t is hea ring . We a ll ta ke it for g ra nted a nd it ta ke s a lo ng tim e fig uring
out w ha t it rea lly m e a ns.
1:
Exp la ining tha t w hole c ha rt ting w ith the d e c ib e ls, m a king sure tha t I und e rsta nd , tha t is
where ….. is hea ring now . Then I c a n exp la in it to the la ym a n in stree t, I tell yo u tha t is m y
m a in frustra tion. I m a ke it m y d uty now to e xp la in a nd ed uc a te a nyone w ho a sks a b o ut
d ea fness, b ut I e xp la in the p rop e r thing …..
2:
Tha t is w ha t is so im p o rta nt is tha t w e sound know led g ea b le. And ho w on ea rth d o I
exp la in the se thing s to m y husb a nd ?
3:
And how to und ersta nd the w ho le fre q uenc y thing . I just und e rsto od tha t w he n you a re
d ea f you a re d ea f a t o ne level. Yo u d o n’ t know ho w you he a r. And then further
inform a tio n – I a m a lw a ys a “ w ha t is next” p erson. I’ m a lw a ys b usy p la nning the future. I
only und erstoo d a b o ut the future w he n I first c a m e to ….. (intervention c enter), b e c a use
the a ud io log ist d id n’ t g ive m e tha t info rm a tion. I wa nted to know tha t a lm o st a ll o f these
c hild ren g o to a m a instrea m sc hoo l. And you c a n’ t sit a nd ha ve to o m uc h inform a tion
a t o ne tim e, you c a n’ t re m em b er everything . To c onc lud e our ne ed s fo r info is the
whole a ud iog ra m thing with a ll the fre q ue nc ies, p inp ointing the d e a fne ss. I kno w m y
g rea test fe a r w a s tha t …..’ s hea ring is g oing to d eteriora te a nd the n she w ill ne ed a
c oc hle a r im p la nt. I think w ha t w ould p rob a b ly d one m ost g oo d is 5’ s story. To hea r the
story from p eo p le w ho ha s b e en thro ug h it a nd their c hild ren a re fine. And e ve n old er
kid s, he a ring tha t this one is stud ying this a nd this one is b e ing a n a c c ounta nt a nd tha t
this is not the end o f the w orld . Ab o ut our c hild re n rea c hing the ir o wn p otentia l.
Testim onia ls from m om s, a c tua lly I wo uld like to re a d the m . You kno w a p ro fe ssiona l w ill
a lw a ys tell you one thing , a nd then yo u ta lk to a m o m , a nd then I und e rsta nd .
1:
I still c a n’ t c ry. I still c a n’ t c ry. I d o n’ t know w hy? I just c a n’ t c ry. I think m a yb e it’ s the
tim e tha t Luke’ s b een in ho sp ita l, the tra um a I’ ve b e en throug h. I d on’ t know w hy?
M a yb e it is a w ea kness a s we ll. M y eyes w ill just slig htly fill w ith tea rs. M a yb e I sho uld lea rn
from 5. To m e it’ s a w ea kness in yourself if you c ry. Be c a use if I’ m g o ing to c ry, w ho is
g oing to c o m fort m e? The re’ s nob od y who’ s g oing to c om fort m e. Bec a use m y
husb a nd a nd I, w e a re in the sa m e b o a t. Wha t w e m ust re a lize is tha t w e a re w om a n,
b ut w e d on’ t know how our husb a nd s a re a lso feeling . The y c a n c om fort, b ut the y d on’ t
ta lk. So to m e it’ s d iffic ult to c ry.
5:
Whe n it c om es to the a ud iolo g ist g iving sup p o rt to us c rying – If you ha d for exa m p le a n
a ud iolo g ist w ho sta rts off w ith you a nd b e the c enter a nd sa m e p e rson, it m a kes it m uc h
ea sier tha n ha ving d ifferent o nes. But I a lso think a lot of it is b a sed on the p e rsona lity of
tha t sp e c ific p erson.
3:
If you c o nnec t you c o nnec t, a nd if you d on’ t, you rec o g nize it stra ig ht a w a y.
5:
The y c ould ha ve a ll these step s w ritten o ut, b ut a s a p e rson not b e a b le to p rovid e
p a rents w ith w ha t the y need . There a re m a tc he s a nd then tha t rela tio nship g ro w s over
tim e ….. (eve ryo ne a g rees).
3:
But I think a ud io log ists need to rec og nize ho w im p orta nt tha t rela tio nship is. I d on’ t nee d
to ha ve a re la tionship w ith m y d entist, a s lo ng a s he d o es w ell with m y tee th. But w ith m y
a ud iolo g ist I w a nt a rela tionship a nd it is suc h a n im p o rta nt re la tionship . M y other ne ed is
a lso the c osts o f e ve rything , b e c a use yo u d o n’ t know w ha t the c osts of e verything a re.
The m ould s, the tests ….. (everyone a g rees).
2:
Yes, if yo u c ould ha ve tha t a s we ll, I m ea n the typ e s of hea ring a id s….
3:
Like I d id n’ t know w hic h of the hea ring te sts a re for free a nd w hic h o ne s you sho uld p a y
fo r. And e ve rything a b out the m ould s. We a re re p la c ing the m o uld s a ll o f the tim e. Wha t
a re the c osts? Wha t is the se rvic e I c a n e xp ec t from ….. (intervention c ente r)?
2:
I think to ha ve a ll tha t info rm a tion up -fro nt. Tha t wo uld re a lly help .
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5:
We virtua lly run throug h m o uld s. During tha t first m o nth I use to p hone the a ud iolo g ist’
ro om s te n tim es a d a y! Be c a use I d id n’ t know a b out the p hysic a l rea lity of those m ould s
a nd we ha d a p rob le m w ith them flo p p ing forw a rd a ll o f the tim e!
2:
I a m a b la c k a nd white p erson w he n it c o m es to info rm a tion. In a b o okle t: I w ould for
exa m p le on m y first p a g e ha ve a p ic ture of the a ud iog ra m . Pic tures d o very w ell. O n the
sec ond p a g e I wo uld like a list o f a ll the sc ho ols, b ut on to p o f tha t exp la in w ha t is
a ud itio n a nd hea ring a nd a lso the d ifferent a p p roa c hes tha t yo u g e t. And then fina nc es
….. A list of a ll the op tio ns in he a ring a id s, the c osts a nd the p ra c tic a l thing , like if it is a
sm a ll b a b y, w e a re lo oking a t c ha ng ing the m ould s o ften.
1:
I like sessions w hen one of the sp eec h thera p ists or a ud iolog ists c a m e b a c k from a
c onferenc e exp la ining a nd re p orting b a c k a b out c oc hle a r im p la nts. It’ s a c ontinuo us
thing these need s – it c ha ng es o ver tim e. I wo uld rea lly like to a ttend c onfe re nc es.
2:
Wha t is g oing to m a ke it e a sie r, c ountry-wid e for a ud iolog ists, is tha t if there is a b ig
we b site with a ll of this o n. All you ha ve to d o the n is g et a c c ess to it. A w e b site tha t
p a rents c a n lo g o n to a nd w rite the ir ow n sto ry d o wn. And if yo u ha ve a q uestion you
c a n a sk it or g ive a n a nswe r if you kno w it. We a c tua lly nee d a b ig we b -site for a ll
p a rents in So uth Afric a …. Or either g ive us a list of a ll a va ila b le we b -sites, p lea se just g ive
m e a ll the w eb -sites. I just nee d this wa ve of info rm a tion rig ht there a nd then.
4:
I think m y info rm a tion nee d s w ere m e t ve ry w ell. M y a ud io log ist e xp la ined everything to
m e in la ym a n’ s term s a nd I w a s c om fo rta b le w ith tha t. I c a n se e 2 loves inform a tio n, I’ m
a p erso n w ho ne ed s just the rig ht a m o unt o f inform a tion. I d on’ t like “ inform a tio noverd ose” . At the sta g e w hen they told m e tha t m y c hild wa s d e a f I w a nte d to g o
hom e a nd then g o a nd think in w hic h d irec tio n I ha ve to g o . I d id n’ t ha ve this d esire to
g o to the inte rne t a nd find o ut – a t tha t sta g e. But yo u know , thing s c ha ng e a s m y c hild
c ha ng es. But I just ne ed to know the fund a m enta ls. To m e a lso ta lking to p eop le, the re ’ s
nothing b ette r tha n ta lking to p eo p le. Like liste ning to 5 w ho se c hild is 6 yea rs old a nd
sp e a king . For m e it is very d iffic ult to b elie ve …..
2:
But tha t wa s a c tua lly m y b ig g est d e sire, I just w a nte d to he a r fro m othe r p a rents.
5:
Whe n w e initia lly c a m e to visit ….. (inte rve ntion c e nter), we wa lked into the g a rd en, a nd
there w a s this one little b o y c a lle d ….. a nd he w a s sp ea king . And tha t w a s w hen I
re a lize d w e we re in the ta lking -p roc ess. And ….. (the little b o y), he d oe sn’ t know , b ut
tha t w a s m e a ning m ore tha n a ny othe r a d ult, b e c a use I sa w tha t …... c ould ta lk a nd
c ould hea r m e w hen I sp e a k to him .
3:
The whole c oc hle a r thing - a t first I d id n’ t und e rsta nd why m y c hild wa sn’ t d ea f enoug h
to ha ve a c oc hle a r im p la nt. M y q uestion a lso ha s b een tha t c oc hlea r kid s ha d a ste p up
from those kid s ha ving hea ring a id s, b ut a fter a w hile it evened o ut a b it.
4:
At first I w a s very sc a re d a b out c oc hle a r im p la nts, a nd I’ m still sc a red . But w he n I d id
c om e to the sc ho ol a nd I he a rd the Im p la nt c hild re n sp ea k, I w a s like w ow ! We nee d
m ore inform a tion a b o ut the im p la nts.
At the end of the d a y, is the q ua lity of tho se c hild ren’ s sp ee c h b etter? If it g ives m y c hild
who ha s hea ring a id s a b ette r q ua lity of sp ee c h, I w ould d o it.
5:
F:
(expla ining a nd giving informa tion a bout cochlea r-impla nt criteria ….)
F:
Listening to you a ll a nd moving on to the next question, wha t would pa rents’ needs then be for
support a nd counseling a fter the dia gnosis of a hea ring loss? Wha t a re your specific needs for
counseling a nd support?
4:
Over here a t ….. (inte rvention c ente r) I’ ve g ot the p erfec t c om b ina tion of sup p o rt a nd
c ounseling . I ha d a tea m c o nsisting o f the soc ia l w orker, m y Pa rent Guid a nc e
The ra p ist… you ha ve this little tea m lo oking a fte r m y son’ s nee d s. And then o b viously I
ha ve the sup p ort of m y p a re nts. I g et fina nc ia l sup p ort from m y p a re nts in a b ig wa y, it
help s m e a lot. I think ….. (interve ntio n c ente r) is d oing very w ell a nd the y a re re a lly
g oing the extra m ile. The soc ia l w orker, I m ea n she is rea lly a nic e p erson.
3:
The soo ne r a nd the c loser yo u c a n g e t to ….. (inte rve ntion c e nter), the b etter. The n you
sta rt form ing a long -te rm re la tionship with them . I find m y Pa re nt Guid a nc e The ra p ist to
b e a b so lute ly w ond erful, she he lp s m e so rting thing s out so tha t I c a n g e t on the rig ht
tra c k. The o nly thing if I lo ok b a c k now tha t I wo uld ha ve d o ne d iffe re ntly, I wa s g iven a
na m e of a p a rent to p hone. But it is very d iffic ult to m a ke tha t c a ll. Yo u’ re in a ve ry b a d
p la c e , ho w d o you a c tua lly m a ke tha t c a ll?
2:
I wa s d esp era te to p ho ne som e one.
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5:
I’ m just thinking a b out it now , I’ m rea lly c onc e rned a b out c ounseling a nd I’ m d e a ling
with a p riva te the ra p ist on a nd off. But w he n it c om e s to ….. (son)’ s thing , it’ s kind o f if I
d id n’ t a lw a ys w a nt to b e invo lved w ith the other m om s to ta lk to them initia lly. But now
I’ m fa r m o re re a d y to sha re a nd ta lk to other m o m s, only now fo r the la st ye a r I w ould
sa y. Initia lly I ha d a lot o f resista nc e to g e t involved . But I think there c o m es a rea d iness
fo r o ne to g et invo lved in c ounseling .
3:
Prob a b ly d iffe rent p eo p le need it a t d ifferent tim e s. To m e it w ould ha ve b ee n nic e to
m eet p a rents w ith young c hild re n, b ut a lso o ld er c hild ren a s w ell. Even if m y c hild is not
there yet, I w a nt to know the kid s. But just to see ho w o ther kid s a re d oing . To g et
op p o rtunitie s to sp e a k to p a rents w ho’ s g ot kid s in sc hoo l or even g o t kid s w ho ha ve
m oved o n…. Just to se e the w hole e xp erie nc e, not only the p a re nts.
5:
I a lso think Pa rent G uid a nc e is a le a rning p ro c ess, b e c a use som e tim es it c o uld b e q uite
intim id a ting w orking w ith your c hild in this room a lone. All o f us ha s ta ken re sp o nsib ility for
our c hild re n – e ve rything is a lw a ys our o wn fa ult. And it is no t a ll our fa ult a nd our
c hild ren a re se p a ra te from us. They a re not p a rt o f us. Not everything ha p p ening to your
c hild is a b out yo u. And thing s d oe sn’ t g e t b ette r im m ed ia tely – it is a p ro c ess. Initia lly you
fe el you a re the only p erso n w ho c a n m a ke thing s w ork, a nd it is not like tha t.
4:
Wow , listening to a ll yo u othe r p eop le’ s exp e rienc es…. You know w ith …… (so n) it’ s …..
Ga vin, m y husb a nd , he ’ s g ot only o ne a rm , a nd you just c a rry on a nd I think tha t is how
we g o on. And the n thing s like using the he a ring a id s d rive s m e c ra zy…. To p ull it o ut a nd
g et it b a c k into his ea rs… He is na ug hty, b ut life g o es o n.
1:
It’ s tha t w ord “ d isa b ility” , not lia b ility.
5:
You kno w I felt fo r a lo ng tim e tha t m y son is not d isa b le d a t a ll, b ec a use he is d oing so
p he no m ena lly we ll. And to m e e ve rything fe lt very sim p le a nd ea sy. But I think for the m
it’ s not. And if w e g ive the m a fa lse se nse of w ha t it’ s like, a nd if w e tell the m tha t they
a re the sa m e a s eve ryb o d y else, w e a re d oing them wrong . Thing s a re d ifferent for the m
tha n for us. I re a lize d tha t ….. nee d s to kno w tha t he is d iffere nt b ec a use w ha t ha p p e ns
som e tim es, a nd I’ m sa ying this over a nd o ver to p eop le: We a ll ha ve o ur stuff, b ut the re
a re thing s tha t is m ore d iffic ult fo r c hild ren w ho c a n’ t he a r tha n for norm a l c hild ren.
The re just a re…. It’ s ha rd e r….. They ha ve to c o nc entra te m o re . I sta rted to rea lize tha t I
nee d ed to sta rt to live in the re a lity. Bec a use p e o p le a nd the w orld a re not a c c ep ting
d ea fness. I’ ve c o m e to a p oint now where I’ ve re a lized tha t I ha ve to tell him tha t he is
d iffe rent a nd tha t thing s c a n b e c om e d iffic ult. To ta lk a b out these thing s w he n they
ha p p en is e xtrem ely im p o rta nt. I ha d to g row to a c c ep t it….
3:
I fe lt very sim ila r to tha t.
4:
It is so g ood to he a r tha t from a ll of you.
5:
Whe n p a re nts c o m e to ….. (inte rvention c ente r) a nd w hen p a rents ha ve a c c ep ted the
d isa b ility, they c a n m ore e a sily g e t integ ra ted into m a instrea m sc ho ols a nd into so c iety.
But p a rents w ho a re still a t a p oint w he re the y d on’ t w a nt other p eo p le to se e their
c hild ’ s hea ring a id s m a kes the c hild fee ls like tha t a lso a nd tha t is w he re em o tiona l
p rob le m s sta rts a nd stuff like tha t. And tha t rea lly hit ho m e to m e ….
3:
I think it is a n im p orta nt thing to think a b out. And it is ha rd tea c hing yo ur c hild to not lim it
herself b ec a use of this, b ut let’ s d e a l with the fa c t tha t it’ s m ore d ifferent a nd m o re of a
c ha lleng e .
5:
The m ore w e know ourselve s, the m ore w e w ould op en ourselves up .
4:
With ….., he is very sm a ll, a nd I think his sm a llne ss is d ra w ing m ore a ttention tha n his ea rs.
2:
You ra ise d a very im p orta nt issue now : he a ring im p a irm e nt versus d e a f. The oretic a lly a ll
our c hild re n, b e c a use none of them g ot a c oc hlea r im p la nt, w e should a ll b e sp e a king
a b out our hea ring im p a ire d c hild ren. Are we d o ing them ha rm b y c la ssifying the m a s
d ea f? Do w e a c tua lly sa y d e a f b e c a use the rest of the w orld und e rsta nd s it b e tter? Or
d o we sp ea k a b out d e a f b e c a use yo u a c tua lly g et a little b it m ore sym p a thy. Or then
hea ring im p a ired a nd p e op le sa y, oh w ell, it c a n’ t b e tha t b a d ? Sho uld w e a c tua lly
m a ke a n effort to not use the w ord d e a f? O r if you a re ta lking a b out hea ring im p a irm e nt
a re you trying to b e a little b it m o re fa nc y, b ec a use le t’ s fa c e it, d ea f is d ea f?
4:
Don’ t yo u think som etim e s w e m a nip ula te it. Like w he n I w a nt e xte nsion fo r a exa m I use
the w ord d e a f?
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2:
F:
F:
F:
I think within m yself if I use the w o rd d ea f, I’ ve a c c e p te d it. I’ m not trying to m a ke
exc use s for it to b e b e tter tha n w ha t it m ig ht b e.
Looking a t the roa d a hea d, wha t a bout future support? How should pa rents continua lly be
supported a t this intervention center?
4:
We need the fina nc ia l sup p ort. The fina nc e s a re the sta rt. We a lso nee d the tec hnolo g y
to ke ep on im p ro ving b e c a use I’ m hop ing tha t o ne d a y there w ould b e som e thing tha t
they c o uld just p ut into the e a r….. When it c om e s to ea rs, ye s for te c hnolog y. And then I
wo uld sa y sup p o rt g ro up s like this, to sup p o rt e a c h othe r, to sha re ….
3:
It’ s a g oo d g uid e. I m e a n w e a re here for resea rc h, so I m ust d o m y p a rt…. But a t the
end o f the d a y, I g a in m ore for m yse lf tha n I think you (the re sea rc he r) g a ine d from m e!
You know wha t I’ m sa ying ?
4:
Yes, so m ething like this hour. It w ill tea c h m e a lo t!
3:
Listening to yo u a ll w hen it c o m es to sup p ort, I think I a m a b a la nc e b etw ee n 2 a nd 4, in
te rm s of the a m ount of inform a tion. Do n’ t o ve rloa d , I wo n’ t ta ke in a ll of it! But I w ould
just like to b e up d a ted in te rm s of wha t is ha p p ening in the w orld – c ha ng es in he a ring
a id s, new tec hnolo g y. Wha te ve r I wo uld b e told from ….. (inte rve ntion c enter) in term s
of tec hnolog y, I w ould b elieve it m ore tha n a n a ud io log ist just trying to m a ke a sa le. You
know , a c ting on m y b est inte rest. Just inform a tio n. And I a lso think it is a lo t a b out a sking
a s w ell. When yo u a sk, yo u g et. I find tha t whenever I’ m b a ttling w ith som e thing , I sp e a k
to ….. (Pa re nt g uid a nc e Thera p ist) a nd w e ta c kle it tog ethe r.
And wha t a bout support fa mily wise?
2:
I think there ’ s d efinitely a ne ed for husb a nd s to b e som e ho w d ra w n into it. And I d on’ t
exa c tly know ho w? It w ould need to b e a fo rc ed b ra a i, m a yb e on a Sa turd a y or
som e thing . Bec a use tha t’ s w he re I’ ve le a rne d tha t d enia l c ould keep you g o ing . M y
husb a nd show ed m e tha t. It’ s a c tua lly a wa y of living life. The o ther thing tha t I d on’ t
know w ho should b e the p erson, it c o uld b e a p riva te p syc holo g ist…… The sc ho ol c ould
help yo u o r sho uld w e just turn to a m othe r’ s g ro up ….. Fo r insta nc e , m y first d a ug hter is 3
now a nd w hen a nd where d o I exp la in to he r tha t she’ s g o t a siste r tha t’ s no t norm a l?
Tha t to m e is a b ig issue. Luc kily I ha ve n’ t c ro ssed tha t b rid g e yet, b ut I’ m g oing to ha ve
to d o it, a nd I wa nt to kno w the w he n a nd how ….
3:
……’ s b ro ther is 3 a nd likes to p ut ….. he a ring a id s in a nd ta ke it out. So he fee ls p a rt of it
a nd the end of it is tha t he a lso hea ring a id s no w b e c a use his b rothe r g ot a id s! I think it’ s
a b out inc lusion. It c a n c om e in a p ra c tic a l w a y ra the r tha n in a n em otiona l w a y.
If I understa nd you correctly in terms of support, you need somebody outside the fa mily, a n
outsider?
2:
I think everyone is just foc using on the m om , b ec a use the m om ta kes a ll up on he rself.
Eve n if it is told a t ….. (inte rve ntion c e nter) o r just a w eb site o r inform a tio n on who is the
b est c ounselor a va ila b le to see . I think som e ho w one ne ed s to look a t the fa m ily a s a
whole . M a yb e just to ta lk rig ht here eve ry no w a nd a g a in a p syc ho log ist to c o m e a nd
a d d ress tha t the se a re the rig ht thing s yo u ne ed to loo k o ut for a nd these a re the thing s
yo u nee d to fo c us on.
3:
I think the integ ra tion with the sib ling s is im p orta nt a nd then the issue of w here the d ea f
c hild is p la c e d . With m e no w it’ s d ifferent b e c a use m y old er c hild is hea ring im p a ire d
a nd m y young er c hild no t. How should w e d ea l w ith tha t? How w ill she rea c t w hen she
g ets old e r a nd her o ld e r siste r g e ts m o re a ttentio n a nd ha ve these thing s on he r ea rs
a nd p ositively a c c e p ting a ll o f this. M a yb e p ut m e in c onta c t w ith p a rents w ith a sim ila r
a g e g a p , ha ving a c oup le of se ssions tog e ther. Som e tim es you’ re no t a w a re o f the fa c t
tha t yo u’ ve g ot a ne ed until so m eb od y else b ring s it up …. And then a lso to b e very up front a b out a ll the servic e s tha t ….. (intervention c enter) c a n p ro vid e.
5:
It w ill ta ke tim e to und ersta nd how this whole sc hoo l system is running …
3:
The y should kee p Pa rent Guid a nc e’ s p a rents just a s inform e d a s they d o sc hoo l
c hild ren’ s p a rents. I w a nt to know a b out e ve rything tha t is ha p p ening a t this c e nter. I’ m
ha p p y to sup p ort, either fina nc ia lly or just to b e the re .
2:
I som etim es think tha t w ha t the y som etim es fo rg et is tha t ne w p a rents ha ve a ll the
ene rg y a nd the d rive a nd w ould love to ra ise a m illion ra nd fo r the sc ho ol, b e c a use tha t
is the future of their c hild . I wa s like tha t, b ut I’ ve g ot d isillusio ne d a long the wa y, a nd
rig ht no w to b e ho ne st, I’ ve g o t no interest in ra ising m oney. I think the sc hool need s to
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re a lize tha t a new p a rent ne ed s to sta y m otiva ted till the tim e tha t they rea lly a c tua lly hit
the sc ho ol, b ec a use a p a rt fro m m e, I’ ve g ot a w id e c irc le of friend s. If I sta y m o tiva te d
a b out the sc hoo l, tha t c o uld b ring in a n inc re d ib le a m ount o f m o ne y from the outsid e
wo rld to wa rd s the sc hoo l.
F:
1:
To m e it is b a sic a lly on the b a sis o f m y wo rk tha t is a p ro b lem . I a lw a ys ha ve to g o
throug h d ra stic m e a sures to b e he re. In a w ork situa tion the y d o n’ t a lw a ys und ersta nd
tha t I ha ve to b e he re . I just think there is a g a p w here your wo rk-situa tion is involve d .
Tha t is m y m a in c o nc ern. Jug g ling e ve rything a nd know ing tha t they a lw a ys e xp e c t m e
b a c k a t the offic e . This I’ m m a king use of every p ossib le wa y of sup p ort tha t …..
(interve ntio n c e nter) is o ffering .
5:
I re a lize tha t a s w e g ro w o ur need s a re c ha ng ing . It d o esn’ t sta y the sa m e…
1:
Tha t’ s w hy we a re c o ntinuo usly a sking o urselves: Are w e d oing thing s rig ht? Are w e on
the rig ht tra c k? I think it will g o o n a nd on, w e c ha ng e a nd o ur need s c ha ng e.
Is there a nything tha t needs to be a dded to a ll of this? (Summa ry a nd reflection, tha nking
everyone for their pa rticipa tion)
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