PERCEPTI ON OF PERSONS W I TH SEVERE OR PROFOUND DEAFNESS
ABOUT THE COMMUNI CATI ON PROCESS DURI NG HEALTH CARE
Adr ian e Helen a Alv es Car doso1 Kar la Gom es Rodr igu es2 Mar ia Már cia Bachion3
Car doso AHA, Rodr igues KG, Bachion MM. Per cept ion of per sons w it h sev er e or pr ofound deafness about t he com m unicat ion pr ocess dur ing healt h car e. Rev Lat ino- am Enfer m agem 2006 j ulho- agost o; 14( 4) : 553- 60.
Th is st u dy descr ibes a qu alit at iv e appr oach w it h t h e obj ect iv e of ch ar act er izin g t h e per cept ion s of p eop le w it h sev er e or p r of ou n d d eaf n ess ab ou t t h e com m u n icat ion p r ocess in t h e con t ex t of h ealt h car e ser v ices. St u d y p ar t icip an t s w er e 1 1 p eop le w it h sev er e an d / or p r of ou n d d eaf n ess, w h o w er e in t er v iew ed u sin g Br azilian sign lan gu age ( LI BRAS) . Th e in t er act ion s w er e v id eot ap ed an d t h en t r an scr ib ed . Car e w as t ak en t o m ain t ain t h e gr am m at ical con st r u ct ion w h ich w as ch ar act er ist ic in t h e ex pr ession of each per son . Thr ee cat egor ies em er ged fr om t hem at ic analy sis: Under st anding, Need for Mediat ion, Feelings. Deaf per sons do not achieve effect ive com m unicat ion in healt h car e, dur ing w hich t hey exper ience negat ive feelings. Hence, t he pr esence of a pr ofessional int er pr et er is needed.
DESCRI PTORS: com m unicat ion; sign language; nur sing
PERCEPCI ÓN DE LA PERSONA CON SORDERA SEVERA Y/ O PROFUNDA
ACERCA DEL PROCESO DE COMUNI CACI ÓN DURANTE SU ATENCI ÓN DE SALUD
La finalidad de est e est udio descr ipt iv o con apr ox im ación cualit at iv a fue car act er izar las per cepciones de personas con sordera severa o profunda sobre el proceso de la com unicación en el cont ext o de su at ención por profesionales de salud. Part iciparon once personas con sordera severa y/ o profunda, que fueron ent revist adas m ediant e el lenguaj e brasileño de signos ( LI BRAS) . Las int eracciones fueron grabadas en cint as VHS y t ranscrit as, m ant eniéndose la const rucción gram at ical caract eríst ica de su expresión. Mediant e análisis t em át ico em ergieron t r es ca t eg o r ía s: En t en d i m i en t o , Necesi d a d d e I n t er m ed i a ci ó n y sen t i m i en t o s. El so r d o n o a l ca n za u n a com unicación eficaz dur ant e la at ención de salud, en la cual ex per im ent a sent im ient os negat iv os, necesit ando la pr esencia de un pr ofesional int ér pr et e.
DESCRI PTORES: com unicación; lenguaj e de signos; enfer m er ía
PERCEPÇÃO DA PESSOA COM SURDEZ SEVERA E/ OU PROFUNDA ACERCA
DO PROCESSO DE COMUNI CAÇÃO DURANTE SEU ATENDI MENTO DE SAÚDE
Est e est u d o d escr it iv o d e ab or d agem q u alit at iv a t ev e o ob j et iv o d e car act er izar as p er cep ções d a pessoa com surdez severa ou profunda sobre o processo de com unicação no cont ext o do seu at endim ent o por profissionais de saúde. Part iciparam 11 pessoas com surdez severa e/ ou profunda, as quais foram ent revist adas u san d o- se LI BRAS. As in t er ações f or am g r av ad as em f it as VHS e t r an scr it as, m an t en d o- se a con st r u ção gr am at ical car act er íst ica da ex pr essão dest as pessoas. Mediant e análise t em át ica em er gir am t r ês cat egor ias: Ent endim ent o, Necessidade de I nt er m ediação e Sent im ent os. O sur do não t em alcançado um a com unicação efet iva durant e o at endim ent o de saúde, no qual experim ent a sent im ent os negat ivos, necessit ando da presença de um pr ofissional int ér pr et e.
DESCRI TORES: com u n icação; lin gu agem de sin ais; en fer m agem
Disponível em língua port uguesa na SciELO Brasil w w w .scielo.br/ rlae 1
I NTRODUCTI ON
C
om m unicat ion is an int er act ion pr ocess inw h i c h w e s h a r e m e s s a g e s , i d e a s , f e e l i n g s a n d em ot ions. I t occur s by m eans of w r it t en and spok en l a n g u a g e , b e s i d e s n o n - v e r b a l m e c h a n i s m s l i k e g est u r es, cor p or al ex p r ession s, im ag es, t ou ch an d ot h er sign s. Com m u n icat ion can also be con sider ed an essen t i al i n st r u m en t al f o r t h e d ev el o p m en t o f hum anit y and an im por t ant t ool for int er v ent ions in t he healt h area( 1- 2).
I n nur sing car e, conscious com m unicat ion is n e e d e d , m a k i n g e f f o r t s t o d e co d e , d e ci p h e r a n d p er ceiv e t h e m ean in g of t h e m essag e p at ien t s ar e sending; t hat is t he only way t o ident ify t heir needs. Mo r eo v er, ef f ect i v e co m m u n i cat i o n al l o w s n u r si n g pr ofessionals t o help pat ient s t o con cept u alize t heir pr oblem s, cope w it h t h em , v isu alize t h e ex per ien ce and even help t hem t o find new behavioral pat t erns( 2). I n t h is p er sp ect iv e, com m u n icat ion can b ecom e a for m of help.
I n s o m e s i t u a t i o n s , n u r s e - p a t i e n t com m u n icat ion can be im pair ed by fact or s in h er en t i n t h e p a t i e n t , su ch a s t h e i m p o ssi b i l i t y t o t a l k , underst and or list en. These are challenging sit uat ions, which have been t he obj ect of research, in which t he b asic p r ob lem is n u r sin g p r of ession als’ d if f icu lt y t o est ablish effect ive com m unicat ion wit h t hese pat ient s. I n t h i s co n t ex t , p r o f essi o n al s u se an y al t er n at i v e f or m s t h ey can iden t if y besides v er balizat ion , su ch a s t o u c h i n g a n d r e a d i n g f a c i a l a n d c o r p o r a l ex pr ession s( 3 - 4 ).
Peop le w it h h ear in g im p air m en t s can f ace problem s relat ed t o effect ive com m unicat ion in healt h car e. Th er e ar e ap p r ox im at ely 5 . 7 m illion h ear in g im pair ed ( HI ) per sons in Br azil. About one m illion of t h e m p r e se n t se v e r e d e a f n e ss( 5 ). Al t h o u g h m a n y s t u d i e s h a v e f o c u s e d o n n o n - v e r b a l com m unicat ion( 1,4,6), t here exist s lit t le lit erat ure about com m unicat ion bet ween healt h professionals and deaf popu lat ion s. Lik e an y ot h er popu lat ion , t h e h ear in g im pair ed n eed h ealt h car e, w h ich is n ot n ecessar ily c o n n e c t e d w i t h d e a f n e s s i t s e l f . N u r s i n g f a c e s com m u n icat ion d if f icu lt ies w h en d eliv er in g car e t o hear ing im pair ed pat ient s( 7 ). I n gener al, in or der t o int er act , pr ofessionals use signs and gest ur es w hich t h ey believ e t o be adequ at e t o t r an sm it w h at t h ey are t rying t o express t o t he deaf person, or t hey ask help from a com panion t o m ediat e in com m unicat ion. H o w e v e r, i t s h o u l d b e c l a r i f i e d t h a t t h e
char act er izat ions of non- v er bal behav ior s applied t o hear ing populat ions ar e not com plet ely applicable t o deaf gr oups( 8).
Hear in g im pair m en t ( w h et h er con gen it al or acquired) consist s in a decreased capacit y t o perceive n o r m a l so u n d . I n d i v i d u a l s w h o se h e a r i n g i s n o t f u n ct ion al in com m on lif e ar e con sider ed deaf. Th e differ ent lev els of hear ing loss can be classified as: light ( loss of up t o 40 dB) ; m oderat e ( loss of bet ween 4 0 and 7 0 dB) ; sev er e ( loss of bet w een 7 0 and 9 0 dB) and pr ofound ( hear ing loss of m or e t han 90 dB) deaf n ess( 9 ).
Healt h professionals t end t o use rudim ent ary for m s of com m unicat ion w it h t his client ele, unless a com pan ion is pr esen t an d h elps t h em by m ediat in g com m unicat ion. I n v er y r ar e cases, bot h t he healt h professional and t he severe or profoundly deaf pat ient m ast er LI BRAS ( Br azilian Sign Language) .
Sig n lan g u ag es d if f er f r om or al lan g u ag es because t hey use a v isu spat ial inst ead of an or al-audit or y m eans or channel. Signs ar e const it ut ed by t he com binat ion of for m s and hand m ov em ent s and r ef er en ce p oin t s in t h e b od y or sp ace( 1 0 ). Br azilian Sign Language ( LI BRAS) is concept ualized as t he form of com m unicat ion and expression, in which t he visual-m ot or linguist ic syst evisual-m s, w it h t heir ow n gr avisual-m visual-m at ical st r u ct u r e , co n st i t u t e a l i n g u i st i c sy st e m f o r t h e t r a n s m i s s i o n o f i d e a s a n d f a c t s , o r i g i n a t e d i n com m unit ies of Br azilian deaf per sons( 11).
Ev en w h en u si n g LI BRAS, d i f f i cu l t i es m ay appear in com m u n icat ion w it h sev er e or pr ofou n dly deaf persons, especially when t he nursing t eam needs t o develop healt h educat ion act ions in t his populat ion b y m e a n s o f s i g n l a n g u a g e , a s t h e s e n t e n c e const ruct ions hearing people t end t o use do not always cor r espond t o t he lex ical univ er se of people w ho ar e deaf since childhood( 12).
Th e q u est i o n b r o u g h t u p i n t h i s r esea r ch em erges from deaf people’s difficult ies t o express and r eceiv e m or e com plex m essages an d f r om t h e f act t h a t , u n t i l n o w , r e se a r ch h a s f o cu se d o n h e a l t h p r o f e s s i o n a l s ’ p e r c e p t i o n s i n s i t u a t i o n s o f com m unicat ion wit h t his client ele( 7,13): how do people w i t h s e v e r e o r p r o f o u n d d e a f n e s s p e r c e i v e t h e com m u n icat ion p r ocess est ab lish ed in t h eir h ealt h ca r e?
healt h car e for t his client ele t hr ough m or e effect iv e c o m m u n i c a t i o n . Mo r e o v e r, w e h o p e t o p r o d u c e i n f o r m a t i o n t h a t c a n o r i e n t h e a l t h t e a c h i n g f o r professional t raining, as well as guide fut ure research st r at egies inv olv ing t his populat ion gr oup.
OBJECTI VE
Th i s s t u d y a i m e d t o c h a r a c t e r i z e t h e p e r c e p t i o n s o f p e o p l e w i t h s e v e r e o r p r o f o u n d d e a f n e ss a b o u t t h e co m m u n i ca t i o n p r o ce ss w i t h pr ofessionals in t he cont ex t of t heir healt h car e.
METHODOLOGY
We car r ied ou t a d escr ip t iv e st u d y w it h a q u a l i t a t i v e a p p r o a ch . Pa r t i ci p a n t s w e r e 1 1 d e a f per sons over 18, w ho at t ended a r eligious inst it ut ion in Goiânia ( GO) , Br azil, w er e lit er at e or sem ilit er at e and com m unicat ed by LI BRAS. This r esear ch pr oj ect was approved by t he coordinat or of t he place of st udy and by t he Research Et hics Com m it t ee at t he Federal Univ er sit y of Goiás ( UFG) .
D u r i n g a l l s t u d y p h a s e s , c o n t a c t w i t h par t icipan t s w as alw ay s m ediat ed by an in t er pr et er fluent in LI BRAS.
I nit ially, w e pr esent ed t he r esear ch pr oposal during one m eet ing of t he deaf group and invit ed all m em bers t o part icipat e. During subsequent m eet ings, w e inquir ed about t heir int er est in par t icipat ing and scheduled a dat e and t im e for an int erview, according t o t he subj ect s’ availabilit y. I n t his cont ext , we again explained t he research and gave t he subj ect s t he Free an d I n f or m ed Con sen t Ter m , w h o m an if est ed t h eir agr eem ent in w r it ing.
D a t a w e r e c o l l e c t e d b y m e a n s o f a sem ist r u ct u r ed in t er v iew . Th e scr ip t ad d r essed t h e f ollow in g t op ics: I - Sociod em og r ap h ic d at a ( ag e, g e n d e r, e d u ca t i o n , p r o f e ssi o n / o ccu p a t i o n , f a m i l y incom e) ; I I - Repor t on healt h car e deliv er y dur ing w hich t he indiv idual per ceiv ed facilit y t o under st and and be underst ood; I I I - Report on healt h care delivery d u r in g w h ich t h e in d iv id u al p er ceiv ed d if f icu lt y t o under st and and be under st ood and I V - Descr ipt ion of t he com m unicat ion process t he individual used wit h t he healt h car e pr ofessionals.
Dat a for t he first t opic were filled out in writ ing by t he int erpret er, while t he descript ions of healt h care
d e l i v e r y w e r e v i d e o r e co r d e d . Th e i n t e r v i e w e e s’ s y n t a c t i c c o n s t r u c t i o n s w e r e r e s p e c t e d i n t h e t ranscript ion of t he int erviews. The t apes will be safely st or ed by t he r esponsible r esear cher for fiv e y ear s, in com pliance wit h Resolut ion 196/ 96 by t he Brazilian Nat ional Healt h Council( 14) and t hen dest r oy ed.
Pa r t i ci p a n t s’ d i sco u r se w a s su b m i t t e d t o t hem at ic analysis( 15). For t he sake of preserving t heir an ony m it y, let t er an d ciph er codes w er e u sed. Th e let t er S cor r esponds t o t he subj ect and t he num ber t o each par t icipant ’s designat ion.
RESULTS AND DI SCUSSI ON
St udy par t icipant s w er e seven m en and four w o m e n , b e t w e e n 2 0 a n d 6 0 y e a r s o l d . Th e predom inant age range was bet ween 31 and 50 years old . All su b j ect s h ad sev er e or p r of ou n d d eaf n ess, occurred before t he first year of life ( eight part icipant s) . Most p ar t icip an t s ear n ed m or e t h an t w o m in im u m w ag es p er m o n t h an d h ad f i n i sh ed at l east b asi c edu cat ion . As t o t h eir pr ofession , t h r ee par t icipan t s w er e seam st r esses, t w o w er e LI BRAS t eacher s, one Re v e r e n d ( r e t i r e d ) , o n e Mi ssi o n a r y, o n e g r a p h i c designer, one st udent , one deboner and one w it hout p r of ession .
D u r i n g t h e i r t e s t i m o n i e s , p a r t i c i p a n t s ex plain ed w h y t h ey h ad sou gh t h ealt h car e on t h e occasion of t he ex per iences t hey r epor t ed. The m ost f r e q u e n t r e p e a t e d r e a s o n s r e f e r r e d t o d e n t a l t r e a t m e n t , h e a d a ch e , st o m a ch a ch e , p r e g n a n cy -relat ed m ot ives, learning t o t alk, earache and cough. Ast h m a , d i a r r h e a , f e v e r, t h r o a t i n f e ct i o n , h e a r t pr oblem s, gy necological t r eat m ent , k idney pr oblem s and v om it ing w er e each m ent ioned once.
A f t e r t r a n s c r i b i n g t h e i n t e r v i e w s , 3 0 2 recording unit s were ident ified ( speech fragm ent s wit h a com p let e m ean in g of a cou r se of act ion ) . Th r ee c a t e g o r i e s e m e r g e d f r o m t h e m a t i c a n a l y s i s : Un d er st a n d i n g , Need f o r m ed i a t i o n a n d Feel i n g s, pr esent ed and discussed below .
Un d er st an d in g
For com m unicat ion t o occur, t her e is a need t o com pr ehend and be com pr ehended w hich, in t he lex ical univ er se of t he hear ing im pair ed ( HI ) m eans
The deaf experience difficult ies t o underst and pr of ession als’ lan gu age becau se t h ese gen er ally do not t ake care t o show t heir m out h, speak fast or use t echnical t erm s which deaf people do not underst and.
Deaf has serious problem s, doct or does not underst and
because deaf t alks face t o face ( S9) .
I say: please, t ake off m ask I don’t underst and ( S11) .
Doct or t alked and I said: calm , t alk fast , t alk slow ( S2) .
Di f f i cu l t , d o ct o r d i f f i cu l t , d o ct o r t al k s d i f f i cu l t . . .
( Technical t erm s) ( S4) .
Th e in t er v iew er h as t o av oid h idin g h is/ h er f ace an d lips w it h h is/ h er h an ds, h air an d obj ect s. The sam e is t rue for pens, pr escr ipt ions and sur gical m ask s. Pr ofessionals should also look dir ect ly at t he pat ient w hile t alk ing( 16). Som e deaf people can r ead l i p s, w h i ch g r ea t l y h el p s t h e p r o f essi o n a l - p a t i en t com m unicat ion pr ocess. How ev er, w hen pr ofessionals do not pay at t ent ion t o t he fact t hat hiding t heir m out h i m p e d e s l i p r e a d i n g , y e t a n o t h e r co m m u n i ca t i o n b ar r ier ap p ear s.
Deaf p eop le of t en d o n ot m an ag e t o r ead w h at pr of ession als w r it e becau se t h er e ar e dif f icu lt w or ds, t ech n ical t er m s; becau se t h e deaf does n ot k n ow Por t u gu ese w ell or becau se t h e pr ofession al’s handw r it ing is illegible.
Writ es angular let t er, look I don’t underst and ( S6) .
Word writ es nam e drug t o t ake, difficult ( S5) .
Usin g w r it in g can be u sef u l du r in g m edical in t er v iew s f or com m u n icat in g w it h t h ese p at ien t s. How ever, for com plex ex planat ions, it is com m on for t h e d eaf p op u lat ion t o b e less in st r u ct ed t h an t h e populat ion in general( 17). Therefore, professionals need t o d e d i ca t e m o r e a t t e n t i o n a n d ca r e t o e x p l a i n t ech n ical t er m s t o t h e deaf. I t sh ou ld be r em in ded t hat legible handw r it ing av oids m isunder st andings as w ell as m edicat ion er r or s:
Tim e of m edicat ion I m ixed up ( S2) .
Difficult ies t o est ablish under st anding r elat e t o t he fact t hat pr ofessionals do not under st and t he deaf eit her. Pr ofessional does not under st and m e because
difficult , Libras difficult ( S4) . He looks at m e sees signs does not
underst and ( S9) .
Alt hough Law No 10.436, issued on April 24t h 2002, which regulat es t he use of LI BRAS, det erm ines t h a t p u b l i c i n st i t u t i o n s a n d p u b l i c h e a l t h se r v i ce concessionaires have t o guarant ee adequat e care and t r eat m en t t o p eop le w it h h ear in g im p air m en t s( 1 1 ), h ealt h pr ofession als do n ot k n ow t h e lan gu age an d t h e r e a r e n o i n t e r p r e t e r s a v a i l a b l e a t t h e h e a l t h ser v i ces.
S o m e t i m e s , h e a l t h p r o f e s s i o n a l s d o n o t u n d e r s t a n d w h a t t h e d e a f w r i t e b e c a u s e t h e g r am m at ical con st r u ct ion t h ey u se is d if f er en t , or
b ecau se t h e h ear in g im p air ed ( HI ) d o n ot m ast er w r it t en language.
I w r it e, if w om an look s t h in k s d if f icu lt . . . d id n ot
underst and ( S3) .
Alt hough Br azilian Sign Language and ot her r elat ed r esour ces for ex pr ession ar e r ecognized as a l eg al m ean s of com m u n i cat i on an d ex p r essi on( 1 1 ),
h e a l t h p r o f e ssi o n a l s a r e n o t o b l i g e d t o k n o w o r
under st and LI BRAS. On t he ot her hand, deaf people who com m unicat e in sign language use gram m ar and v ocabular y t hat is differ ent fr om Por t uguese. Hence,
people who were born deaf in Brazil m ay be fluent in LI BRAS and not in Por t uguese.
Th e H I d e s c r i b e t h e l a c k o f m u t u a l c o m p r e h e n s i o n a s “ b l o c k e d c o m m u n i c a t i o n ” o r
“ com m unicat ion does not com bine”.
St om ach hurt s, go t o doct or, t alk, com m unicat ion does
not com bine not hing ( S5) .
I n som e sit uat ions, t he deaf under st and t he h ealt h p r of ession als: w h en t h ey u se LI BRAS, w r it e
easily, t alk slow ly and w hen t he deaf can read lips.
Now I have friend doct or knows signs, t akes care of
everyt hing ( S7) .
I have already been t o deaf dent ist , wom an graduat ed
dent ist , good ( S9) .
Com m unicat ion easier because learns, phonoaudiologist
speak slow ly ( S2) .
When deaf reads lip easier ( S5) .
M o s t i n t e r v i e w e e s m e n t i o n e d t h a t t h e
co m m u n i ca t i o n p r o b l e m w o u l d e n d i f t h e h e a l t h pr ofessional could use LI BRAS. This finding is sim ilar
t o anot her st udy( 17), in which t he deaf also put forward t he need for healt h pr ofessionals w ho k now how t o
u se LI BRAS.
Anot her sit uat ion in which t he deaf indicat ed
easy under st anding dur ing com m unicat ion w as w hen n ot m an y ex plan at ion s w er e n eeded on bot h sides. This w as par t icular ly t he case in dent al car e.
He wrot e: wat er, spit I underst ood ( Referring t o t he
dent ist ) ( S7) .
Professionals underst and t he deaf w hen t hey s e e s i g n s o f d i s e a s e , w h e n t h e d e a f m a k e s ch ar act er ist ic g est u r es ( “ u n iv er sal” w it h in a g iv en sociocult ur al cont ex t ) and w hen t he deaf w r it es.
When fever, coughing easily, doct or sees and knows
I went t oot h problem , saw, t reat ed, wrot e, t oot h very
good ( S3) .
I point ed at belly, face of pain ( S2) .
When deaf people seek healt h care and show c l i n i c a l s i g n s o f d i s e a s e , i t i s e a s i e r f o r h e a l t h professionals t o det ect w hat is going on; how ev er, in cases of disease wit hout any apparent cause, in which a m o r e t h o r o u g h p a t i e n t h i st o r y i s n e e d e d , t h e sit uat ion becom es m ore com plicat ed. Deaf people can u se g est u r es an d ex p r ession s t h at ar e n ot p ar t of LI BRAS, but w hich ar e univ er sally under st ood, such as pain expressions, point ing at t he sit e and defining t he t ype of pain. Pat ient s who have been alphabet ized in Por t uguese can also w r it e alt hough, as m ent ioned ab ov e, t h eir g r am m at ical con st r u ct ion is d if f er en t . Thus, professionals should pat ient ly t ry t o underst and w h a t t h e d e a f w a n t t o s a y a n d , i f t h e y d o n o t under st and, t hey should not be afr aid t o adm it t hat t hey hav e not under st ood and ask again.
Healt h professionals need general and specific com m unicat ion sk ills for car e deliv er y t o hear ing as w e l l a s n o n - h e a r i n g p a t i e n t s. I n m a n y a sp e ct s, ph en om en a t h at m ak e com m u n icat ion bet w een t h e HI an d h ealt h p r of ession als m or e d if f icu lt ar e t h e sam e as for t he hearing populat ion, m ainly when t he per son s in v olv ed ar e n ot t alk in g f ace t o f ace, w it h access t o t he face t o face v isual field ( especially t he m o u t h ) , u si n g t e r m i n o l o g y t h a t p a t i e n t s d o n o t u n d er st an d .
Need for m ediat ion
Most of t he t im es, t he deaf need people who t r an slat e t h eir em ission s t o pr of ession als an d v ice-versa, leading t o t he need for m ediat ion. The m ediat or i s c o n f i g u r e d i n f a m i l y, f r i e n d a n d p r o f e s s i o n a l in t er p r et er s.
Fam ily helps, goes t oget her t alks doct or ( S6) .
Our fam ily com bines, because knows signs ( S7) .
Som e charact ers appear in t his cont ext , such as t he m ot her, fat her, sibling, child, husband. However, t he m ot her undeniably st ands out and appears in 30 of t he 55 recording unit s about fam ily.
Only m ot her always t oget her, I already got used ( S9) .
Som et im es, t he com panion is also deaf but h a s b et t er m a st er y t o co m m u n i ca t e w i t h h ea r i n g p e o p l e . On e p a r t i ci p a n t m e n t i o n s t h a t h e r d e a f husband accom panies her and ser v es as a m ediat or ( t he husband has a higher educat ion degree, m ast ers reading and writ ing and can read lips) . I t oget her deaf
husband, t he t wo t oget her he explains m e I underst and ( S7) .
Som et im es, r elat iv es in st in ct iv ely “ t alk on behalf of t he deaf” or on t heir r equest , as show n by one of t he int erviewees’ discourse: fat her t oget her asked
doct or, com m unicat e wit h m e no, ask fat her t alk m e ( S8) .
Alt h ou gh fam ily m em ber s r epr esen t h elp in m ost cases, t hey can also represent a problem when t hey do not allow t he deaf t o part icipat e as an act ive a g e n t i n t h e i r t r e a t m e n t , w h e n i t i s t h e d e a f ’ s com p an ion w h o ex p lain s h is/ h er h ealt h p r ob lem t o t he pr ofessional and also r eceiv es or ient at ions; t hus, t he deaf m ay not even have t he opport unit y t o expose t heir doubt s( 17).
An o t h e r f a m i l y - r e l a t e d i ssu e i s t h a t d e a f p er so n s b eco m e d ep en d en t , as t h e f am i l y can n o t always accom pany t hem when t hey need healt h care.
But wit hout m ot her bad life, problem sick, occupied,
t ravels, I alone lost ( S9) .
Fam ily is bad, fat her occupied because works all t he
t im e ( S5) .
Par t icip an t s’ r ep or t s also r ev eal f r ien d s as m ediat or s in t h is com m u n icat ion pr ocess. Th ey can be neighbors or even anot her deaf person wit h m ore inst r uct ion or ex per ience.
Deaf helps ot her deaf ( S3) .
I know friend who reads prescript ion, sees t im e ( S4) .
Al t h o u g h n o t a cce ssi b l e t o m o st H I , t h e int erpret er is t he preferred opt ion am ong all m ediat ors.
I nt erpret er bet t er signs t han m ot her, but perfect no
( S10) .
I m port ant t hing, dent ist , nurse, healt h, each work cit y
need int erpret er in all place, fut ure bet t er ( S5) .
Th e p r e s e n c e o f a n i n t e r p r e t e r i s a l s o im port ant t o healt h professionals, m ainly for collect ing t he pat ient ’s hist ory( 16).
The int erpret er can help t he deaf, even wit hout a c c o m p a n y i n g t h e m d u r i n g h e a l t h c a r e , a s t w o in t er v iew ees m en t ion ed:
I som et im es asked int erpret er t o writ e everyt hing, t ook
t o t he dent ist , handed in t o person read underst ood ( S9) .
I seek in t er p r et er , if in t er p r et er can n ot calls t h e
Professional, t hey t alk he underst ands... ( S3) .
The deaf’s report s suggest t hat t he availabilit y of an int erpret er in hospit als would be of great help in t h e com m u n icat ion pr ocess.
Hospit al needs t o have int erpret er I go alone ( S9) .
I n t h e sa m e w a y, a n o t h e r st u d y( 1 7 ) a l so i d en t i f i ed t h e n eed f o r t h e p r esen ce o f a LI BRAS int er pr et er dur ing doct or ’s appoint m ent s.
int erpret ers in t heir fam ily, while ot her pay a qualified int er pr et er w hen necessar y, but t hey do not alw ay s hav e t he m oney t o pay. Som et im es, t he fam ily cannot accom pany t hem and, at ot her t im es, t he int erpret er is not av ailable.
I gave up asked int erpret er t o go t oget her [ ...] Because
difficult , int erpret er does not have ( S9) .
Acco r d i n g t o D e cr e e No 5 6 2 6 , i ssu e d o n Decem b er 2 2n d 2 0 0 5 , w h ich r eg u lat es t h e LI BRAS Law( 1 8 ), car e d eliv er y t o d eaf or h ear in g im p air ed people in t he public healt h net work or in public healt h c a r e c o n c e s s i o n a i r e s m u s t b e c a r r i e d o u t b y pr of ession als w h o ar e t r ain ed t o u se LI BRAS or f or i t s t r an sl at i o n a n d i n t er p r et at i o n . Th i s l eg i sl a t i o n r e p r e s e n t s a n i m p o r t a n t c o n q u e s t f o r t h e d e a f populat ion, as indicat ed by t he expect at ions revealed in par t icipant s’ t est im onies.
Feelin g s
Heal t h p r of essi on al s’ l ack of d i al og u e an d list ening t ow ar ds ( hear ing) healt h ser v ice user s has b een in d icat ed as r em ar k ab le an d an ob st acle f or qualit y car e. For deaf people, br eak ing t his cont ex t , wit h all of t he lim it at ions it ent ails, can be ext rem ely ch allen gin g, cr eat in g differ en t feelin gs. Par t icipan t s’ d i sco u r se d e m o n st r a t e s t h a t t h e co m m u n i ca t i o n pr ocess gen er at es f ear w h en t h e deaf go t o h ealt h car e w it hout any com panion.
I alone was afraid because doct or underst and not hing
(S9).
The deaf also t alk about t heir fear of being deceived. When t hey seek healt h care, like any ot her indiv idual, t hey need t o fill out files, for m s and sign t hem . Many deaf people have lit t le inst ruct ion and do not m anage t o read and underst and t hese docum ent s. I n ed u cat ion in st it u t ion s f or d eaf p eop le, t h ey ar e t aught not t o sign any t y pe of docum ent w hich t hey d o can n o t u n d er st an d . Hen ce, t h ese f i l es ar e y et anot her bar r ier t o t heir car e.
Secret ary called t o fill out file, no, dangerous because I
writ e lit t le ( S7) .
B e c a u s e t h e y d o n o t u n d e r s t a n d w h a t pr of ession als say an d w r it e, do n ot u n der st an d t h e p r escr i p t i o n an d assess t h at p r o f essi o n al s d o n o t u n der st an d t h em , t h e deaf ar e afr aid t h at t h ey w ill t ak e t h e w r on g m edicat ion an d/ or t h at t h e disease w ill cont inue.
Can t alk doct or he prescript ion can wrong m edicat ion,
disease cont inue I fear ( S9) .
An o t h e r f e e l i n g t h e d e a f m e n t i o n e d w a s s u f f e r i n g ( “ d e a f s u f f e r s ” ) , b e c a u s e t h e y f e e l discrim inat ed against in our societ y where m ost people can hear, and because t hey do not have access t o an in t er p r et er w h en t h ey n eed car e. Th ey say Hear er
always bet t er deaf bet t er never [ ...] For t he hearer easy m uch
above, need deaf equal, warn pay int erpret er seem s discrim inat ion
[ ...] Deaf needs t o dream , com plain, ask m ore int erpret er. Needs
suffering of deaf t o end ( S10) .
Th e deaf n eed pr ofession als t o accept t h eir condit ion, not discr im inat e against t hem and r em ain indiffer ent . The hear ing im pair ed w ant t o be t r eat ed as cit izens and as part of societ y( 17).
Bot h m ed ical an d n u r sin g t eam s an d d eaf pat ient s t hem selves indicat e com m unicat ion difficult ies for healt h car e( 7, 16- 17). Thus, t her e is a need t o find m eans t o t ur n t his com m unicat ion less t r aum at ic on bot h sides.
The deaf feel discr im inat ed against because t h ey do n ot r eceiv e car e t h at is adequ at e f or t h eir condit ion, as guarant eed by current law s( 11), because t hey have t o queue for a long t im e before t hey receive care, since t hey cannot hear when t heir nam e is being called and since pr ofessionals, even w hen t hey know t h at t h e clien t is deaf, do n ot pay at t en t ion t o call him / her in an appropriat e w ay. I deaf difficult , I second
person, I t hird, fourt h... I wait , I wait , because I did not hear
(S6).
Deaf people also suffer because t hey do not have an int er pr et er t o help t hem com m unicat e w hen t h ey seek h ealt h car e. Th is sit u at ion r ep eat s it self w h e n t h e y a r e t r y i n g t o o b t a i n t h e p r e s c r i b e d m edicat ion, when t hey go t o t he pharm acist ’s t o buy m edicines. They say t here is no int erpret er, doct or, t hings,
deaf suffers ( S9) . Sad hospit al, pharm acist ’s. Pharm acist ’s sad,
ask int erpret er wom an cannot , difficult ( S2) .
Al l o f t h e d i f f i cu l t i e s t h e y f a ce g e n e r a t e feelings of anger in t he deaf. One part icipant m ent ions
I anger because doct or difficult , because t alk fast , calls nam e
and t akes t im e because I deaf...( S2) .
The deaf also m anifest ed feelings of happiness and r elief w hen t hey m anage t o com pr ehend and be c o m p r e h e n d e d . Th e e x t e n t o f t h e i r j o y c a n b e p e r ce i v e d w h e n o n e o f t h e i n t e r v i e w e e s sa y s: I
underst and, great , I j um p w it h j oy, happy ( S3) .
Calm , need pat ience, I ex plain again. Doct or v er y
nervous, face different ( S2) .
Th e k ey t o su ccessf u l com m u n icat ion w it h d eaf p er son s is t o ad ap t t o t h is sit u at ion( 1 6 ). Deaf p eop le m ak e su g g est ion s on h ow t o im p r ov e t h eir com m u n icat ion w it h h ealt h pr ofession als. Th e lat t er should be sensit ive enough t o be willing t o t ry.
CONCLUSI ONS AND FI NAL CONSI DERATI ONS
D ea f p eo p l e h a v e a d i f f er en t cu l t u r e a n d lan g u ag e, w h ich m u st b e k n ow n an d r esp ect ed in accor dan ce w it h et h ical, m or al an d legal pr in ciples, j u st l i k e an y o t h er ci t i zen . Th i s st u d y p r esen t s a p er sp ect i v e o n t h e r ea l i t y o f h ea l t h ca r e a s i t i s experienced by t he deaf. Part icipant s’ report s evidence dif f icu lt ies f or adequ at e h ealt h car e, du e t o f act or s l i k e : a b s e n c e o f a d e q u a t e m e d i a t i o n ; l a c k o f pr epar at ion for healt h pr ofessionals w ho deliv er car e t o deaf people, ranging from t heir recept ion unt il t he m om ent t hey receive final orient at ions about care and t reat m ent . Professionals do not pay at t ent ion t o sim ple r esou r ces, su ch as sh ow in g t h eir m ou t h w h ile t h ey
t al k . I n t h e h eal t h car e con t ex t , d eaf p eop l e f eel
discr im in at ed again st , t h ey ar e afr aid becau se t h ey
d o n ot u n d er st an d w h at p r of ession als ar e say in g ,
ev idencing t he need for special car e.
Par t icipant s r ev eal t hat effor t s t o ov er com e
com m unicat ion difficult ies ar e st ill based on int uit ion
and int erlocut ors’ good sense. I n t his unequal relat ion,
p ar t icu lar ly t h e d eaf h av e u n d er t ak en t h e g r eat est
pr oact iv e effor t s t o find m easur es t hat can incr ease
m ut ual com prehension. They dem and t he presence of
a n i n t e r p r e t e r a t h e a l t h i n st i t u t i o n s, a s r e ce n t l y
est ablished in Decr ee No 5626, issued on Decem ber
22nd 2005( 18). I n order t o put t his legislat ion int o pract ice, t here is a need t o encourage t raining courses for healt h
professionals t o deliver care t o HI , value t his t raining
w h e n h e a l t h p r o f e s s i o n a l s a r e h i r e d i n h e a l t h
inst it ut ions; offer LI BRAS t raining at healt h inst it ut ions
for act ive professionals and discuss t he com m unicat ion
process wit h deaf people in undergraduat e courses in
h eal t h . Th i s w i l l st i m u l at e h eal t h p r o f essi o n al s t o
becom e in t er pr et er s, m ak in g it easier t o gu ar an t ee
t he presence of at least five percent of LI BRAS- t rained
workers, as det erm ined by law( 18).
REFERENCES
1 . Silva LMG, Br asil VV, Gu im ar ães HCQP, Sav on it t i BHRA, Si l v a MJP. Co m u n i cação n ão v er b al : r ef l ex õ es acer ca d a linguagem cor por al. Rev Lat ino- am Enfer m agem 2000 j ulho-ag ost o; 8 ( 4 ) : 5 2 - 8 .
2. St efanelli MC, Carvalho EC, organizadoras. A com unicação n o s d i f e r e n t e s co n t e x t o s d a e n f e r m a g e m . Ba r u e r i ( SP) : Man o l e: 2 0 0 4
3 . Z i n n GR, Si l v a MJP, Tel l es SCR. Co m u n i ca r - se co m o p acien t e sed ad o: v iv ên cia d e q u em cu id a. Rev Lat in o- am En f er m ag em 2 0 0 3 m aio- j u n h o; 1 1 ( 3 ) : 3 2 6 - 3 2 .
4. Dell’ Acqua MCQ, Araúj o VA, Silva MJP. Toque: qual o uso at u al p el o en f er m ei r o? Rev Lat i n o- am En f er m ag em 1 9 9 8 m ar ço- ab r il; 6 ( 2 ) : 1 7 - 2 2 .
5 . I BGE. I n st i t u t o Br a si l e i r o d e Ge o g r a f i a e Est a t íst i ca . [ hom epage na I nt er net ] . Rio de Janeir o: I BGE [ Acesso 2006 j aneiro 30] . Censo Dem ográfico - 2000. [ um a t ela] . Disponível em : h t t p : / / w w w . i b g e. g o v. b r / h o m e/ est a t i st i ca / p o p u l a ca o / cen so 2 0 0 0 / t ab u l acao _ av an cad a/ t ab el a_ b r asi l _ 1 . 1 . 3 . sh t m 6. Silva MJP. Aspect os gerais da const rução de um program a sobre a com unicação não verbal para enferm eiros. Rev Lat ino-am En f er m agem 1 9 9 6 m aio- abr il; 4 ( especial) : 2 5 - 3 7 . 7. Rosa CG, Barbosa MA, Bachion MM. Com unicação da equipe de enfer m agem com deficient e audit iv o com sur dez sev er a: um est udo explorat ório. Rev Elet rônica Enferm agem [ seriado online] 2000 j ulho- dezem br o [ cit ado 11 j unho 2003] ; 2( 2) : Disponív el em : URL: ht t p: / / w w w .fen.ufg.br / r ev ist a
8 . Lu ci a n o JM. Re v i si n t i n g Pa t t e r so n ’ s p a r a d i g m : g a z e b eh av i o r s i n d eaf co m m u n i cat i o n . Am An n al s D eaf 2 0 0 1 Mar ch ; 1 4 6 ( 1 ) : 3 9 - 4 4 .
9. Secret aria de Educação Especial ( BR) . Deficiência Audit iva. Sé r i e At u a l i d a d e s Pe d a g ó g i ca s. Br a síl i a : Se cr e t a r i a d e Ed u cação Esp ecial; 1 9 9 7 ; ( 4 ) : 3 1 , 5 3 - 4 .
10. Secr et ar ia de Educação Especial. ( BR) Língua Br asileir a de Sinais. Série At ualidades Pedagógicas. Brasília: Secret aria d e Ed u cação Esp ecial; 1 9 9 7 .
1 1 . Fe d e r a çã o N a ci o n a l d e Ed u ca çã o e I n t e g r a çã o d o s Sur dos. [ hom epage na I nt er net ] . Rio de Janeir o: Feder ação Nacional de Educação e I nt egr ação dos Sur dos. [ acesso em 2006 j aneiro 31] . Lei nº 10436, de abril de 2002, que dispõe da Língua Brasileira de Sinais e dá out ras providências. [ um a t ela] . Disp on ív el em : h t t p : / / w w w . f en eis. com . b r / leg islacao/ l i b r a s/ Reg u l a m en t a % E7 % E3 o % 2 0 d a % 2 0 Li b r a s. h t m 1 2 . Ba r b o sa MA, Ga l v ã o VR, Ma g a l h ã e s MC, Pi r e s H B, Fonseca APM, Teles AS, et al. Ensino e saúde: o que pensam e o q u e sa b e m o s d e f i ci e n t e s a u d i t i v o s. Re v El e t r ô n i ca Enferm agem [ seriado online] 1999 out ubro- dezem bro, [ cit ado 1 7 d e z e m b r o 2 0 0 3 ] ; 1 ( 1 ) D i s p o n ív e l e m URL: h t t p : / / w w w .fen.ufg.br/ revist a
13. Mart in SE, I rw in J. The use of sign language int erpret ing ser v ices by m edical st aff in Dundee. Healt h Bull. 2000 May ; 5 8 ( 3 ) : 1 8 6 - 9 1 .
16. Barnet t S. Com m unicat ion w it h Deaf and Hard- of- hearing people: A Guide for Medical Educat ion. Acad Med 2002 July; 7 7 ( 7 ) : 6 9 4 - 7 0 0 .
1 7 . San t os EM, Sh ir at or e K. As n ecessidades de saú de n o m undo do silêncio: um diálogo com os surdos. Rev Elet rônica En f er m agem [ ser iado on lin e] 2 0 0 4 j an eir o- abr il [ cit ado 2 7 set em br o 2 0 0 4 ] ; 6 ( 1 ) : 6 8 - 7 6 [ 9 t elas] Dispon ív el em URL: ht t p: / / w w w .fen.ufg.br/ revist a.
1 8 . Fe d e r a çã o N a ci o n a l d e Ed u ca çã o e I n t e g r a çã o d o s Su r dos. [ h om epage n a I n t er n et ] . Rio de Jan eir o: Feder ação Nacional de Educação e I nt egr ação dos Sur dos. [ acesso em 2 0 0 6 j an eir o 3 1 ] . Decr et o n º 5 6 2 6 de 2 2 de dezem br o de 2 0 0 5 . Regu lam en t a a lei n º 1 0 4 3 6 , de abr il de 2 0 0 2 , qu e dispõe da Lín gu a Br asileir a de Sin ais e o ar t 1 8 da Lei n º 10098 de 19 de dezem br o de 2000. [ um a t ela] . Disponív el e m : h t t p : / / w w w . f e n e i s . c o m . b r / l e g i s l a c a o / l i b r a s / Re g u l a m e n t a % E7 % E3 o % 2 0 d a % 2 0 Li b r a s. h t m
