LI VI NG W I TH DI ABETES: THE EXPERI ENCE AS I T I S TOLD BY CHI LDREN
1Pat r ícia Luciana Mor eir a2 Giselle Dupas3
Diabet es m ellit us is a chronic disease t hat dem ands adapt at ion in t he psychological, social and physical spher e. This st udy aim ed t o under st and t he exper iences of childr en w it h t he disease. Sym bolic I nt er act ionism and Gr ounded Theor y w er e used as a t heor et ical and m et hodological r efer ence fr am ew or k , r espect iv ely . We int er v iew ed childr en in t he age gr oup bet w een 7 and 14 y ear s old. A t ot al of 7 t opics w er e ident ified in t he collect ed dat a, w hich w er e: “ Ex per iencing som et hing unex pect ed” , “ Facing a har sh r ealit y ” , “ Being afr aid of what is happening” , “ Living under cont rol” , “ Trying t o adapt t o a new realit y” , “ Mat uring wit h t his close relat ionship” and “ Seeing t his disease from a different angle” . Living wit h diabet es is som et hing t hese children are confront ed w it h daily from t he very m om ent it is diagnosed, having t o live w it h a rest rict ed diet , insulin t herapy and life st yle changes, fact s t hat br ing about feelings t hat r ange fr om fear t o insecur it y, t o r evolt , t o accept ance and adapt at ion .
DESCRI PTORS: child; diabet es m ellit us; life change ev ent s
VI VI ENDO CON LA DI ABETES: LA EXPERI ENCI A RELATADA POR NI ÑOS
La diabet es m ellit u s es u n a en f er m edad cr ón ica qu e ex ige adapt ación en los ám bit os psicológico, social y f ísico. El pr esen t e t r abaj o t u v o com o obj et iv o com pr en der la ex per ien cia del n iñ o v iv ien do con la enferm edad. Los referenciales t eórico y m et odológico ut ilizados fueron el I nt eraccionism o Sim bólico y la Teoría Fundam ent ada en los Dat os, respect ivam ent e. Ent revist am os niños con las edades de 7 hast a 14 años. Un t ot al de 7 t em as fueron ident ificados en los dat os recopilados, siendo ellos: “ Viviendo algo inesperado” , “ Enfrent ando una dura realidad” , “ Sint iendo m iedo sobre lo que est á pasando” , “ Viviendo baj o cont rol” , “ I nt ent ando adapt arse a la nuev a r ealidad” , “ Madur ando con la conv iv encia” , “ Mir ando la enfer m edad de una m aner a difer ent e” . La v iv encia con la diabet es es algo que el niño enfr ent a cada día, desde el m om ent o del diagnóst ico, t eniendo lim it acion es en la diet a, la in ser ción de la in su lin ot er apia, el cam bio en el est ilo de v ida, h ech os esos qu e desencadenan sent im ient os que oscilan ent r e m iedo, insegur idad, indignación y adapt ación.
DESCRI PTORES: niño; diabet es m ellit as; acont ecim ient os que cam bian la v ida
VI VENDO COM O DI ABETES: A EXPERI ÊNCI A CONTADA PELA CRI ANÇA
O diabet es m ellit us com o um a doença crônica exige adapt ação nos âm bit os psicológico, social e físico. Est e est udo t em por obj et ivo com preender a experiência da criança na vivência com a doença. Os referenciais t eór ico e m et od ológico u t ilizad os f or am o I n t er acion ism o Sim b ólico e a Teor ia Fu n d am en t ad a n os Dad os, r espect iv am ent e. Ent r ev ist ou- se 12 cr ianças na faix a et ár ia ent r e 7 e 14 anos. Um t ot al de 7 t em as for am ident ificados nos dados colet ados, sendo eles: “ Viv endo algo inesper ado” , “ Enfr ent ando um a dur a r ealidade” , “ Ten do m edo do qu e est á acon t ecen do” , “ Viv en do sob con t r ole” , “ Ten t an do adapt ar - se à n ov a r ealidade” , “ Am adurecendo com a convivência” , “ Olhando para a doença de um j eit o diferent e” . A vivência com o diabet es é algo qu e a cr ian ça en f r en t a a cada dia, desde o m om en t o do diagn óst ico, t en do lim it ações n a diet a, a in ser ção da in su lin ot er apia, a m u dan ça n o est ilo de v ida, f at os esses qu e desen cadeiam sen t im en t os qu e oscilam ent r e m edo, insegur ança, r ev olt a, aceit ação e adapt ação.
DESCRI TORES: cr iança; diabet es m ellit us; acont ecim ent os que m udam a v ida
1
I NTRODUCTI ON
A
ch r on ic d isease is t h at w h ich “ r eq u ir es const ant m edical follow - up and cont r ol t r eat m ent . I tm ay b e m in im ized or it m ay p er sev er e t h r ou g h ou t
t h e in d iv id u al’s en t ir e lif e, con st an t ly af f ect in g t h e
in d iv id u al’s d aily r ou t in e an d act iv it ies b ecau se of
hospit alizat ion, com plet ion of ex am s, m edical follow
-up or even due t o dom iciliar y per m anence( 1)”.
According t o t he Healt h Minist ry, “ diabet es is
a chr onic hy per gly cem ic st at e, succeeded by chr onic
an d acu t e com p licat ion s, w h ich m ay in clu d e or g an
d am ag e, d y sf u n ct ion or collap se, esp ecially of t h e
k i d n ey s, n er v es, h ear t an d b l o o d v essel s. I t i s a
com m on disease of growing frequency. I t is est im at ed
t h at in 1 9 9 5 it r each ed 4 % of t h e adu lt popu lat ion
worldwide and t hat by 2025, it will reach proport ions
of 5,4% ”. I n Brazil, t here are approxim at ely 5 m illion
d iab et ics, ou t of w h ich r ou g h ly 3 0 0 t h ou san d s ar e
m inors under 15 years of age. Diabet es m ellit us t ype 1 i s o n e o f t h e m o st co m m o n ch r o n i c ch i l d h o o d
d i seases an d i s am o n g t h o se t h at m o st d em an d s
p sy ch o l o g i ca l , so ci a l a n d p h y si ca l a d a p t a t i o n o f
children as well as of t he fam ily( 2).
Th u s, m om en t s of ad v an ce an d r eg r ession
are seen in fam ily relat ions, all of which t ake up t im e
an d en er gy, w it h t h e possibilit y of r edu cin g pr ivacy
as well as provoking social and em ot ional isolat ion( 3).
I t is w ell- k n ow n t h at lim it at ion s u n der gon e
by childr en w it h diabet es ar e count less and can set
-off m any em ot ions such as, fear and insecur it y, and
at t it udes t hat go from conform ism t o self- care, all of
w h ich ar e ex p er ien ced f or lon g p er iod s of t im e( 4 ).
Fur t her m or e, em ot ions cr eat ed in childr en facing t his
chr onic disease ar e sim ilar t o em ot ions ex per ienced
at an y ag e r an g e, am on g w h ich , on e can p er ceiv e
denial, m inim izat ion of disease, anger and frust rat ion
d u e t o l i m i t a t i o n o f t h e p a t h o l o g y, d e p r e s s i n g
sy m p t o m s, g u i l t , sear ch f o r i m p o ssi b l e so l u t i o n s,
am ong ot her s( 5). Depr ession has a significant ly high
per cent age am ong adolescent w it h m ellit us diabet es
t y pe 1( 6) and depr ession pr oblem s, as w ell as
self-est eem dist r ess, hav e a negat iv e im pact in diabet es
adapt at ion and cont r ol of t his pat hology( 7).
I t is believed t hat underst anding how children,
under t heir ow n perspect ive, live and experience t his
disease, will offer assist ance t owards a nursing pract ice
t h at w i l l en ab l e n u r ses t o h el p ch i l d r en an d t h ei r
fam ilies along t he long healt h- illness pr ocess.
OBJECTI VE
U n d e r s t a n d i n g c h i l d r e n ’ s e x p e r i e n c e
u n der goin g diabet es.
MATERI ALS AND METHODS
Th eor et ical r ef er en ce
Wit h t he int erest of underst anding, t he nat ure
of int er act ions and t he social dy nam ics t hat inv olv es
t h e i n d i v i d u a l a t a d e e p e r l e v e l , S y m b o l i c
I n t er act ion ism w as ch osen as t h eor et ical r ef er en ce
for t his w or k .
Sym bolic I nt eract ionism values, above all, t he
s i g n i f i c a n c e h u m a n b e i n g s a t t r i b u t e t o t h e i r
experiences. I n agreem ent wit h such reference people
are subm it t ed t o const ant change in int eract ions, which
at t h e sam e t im e, d o n ot b ecom e lim it ed t o w h at
h ap p en s on ly am on g t h em , b u t r each es in t o w h at
occur s inside t he per son. Thus, t he per son int er act s
behaving, perceiving, int erpret ing, act ing again, which
m ak es t he per son act or and r eact or in t he pr ocess,
becom ing unpr edict able and act iv e in t he w or ld( 8).
Met h od ological r ef er en ce
Grounded Theory, which follows t he prem ises
o f Sy m b o l i c I n t e r a ct i o n i sm , i s t h e d a t a a n a l y si s
m et hod chosen for t he pr esent paper.
Gr o u n d e d Th e o r y w a s d e v e l o p e d b y t h e
Am e r i ca n so ci o l o g i st s Ba r n e y Gl a se r a n d An se l m St rauss( 9) and is a qualit at ive research m et hod aim ed at discov er ing new concept s and t heor ies by m eans
o f d a t a f r o m r e a l i t y, r a t h e r t h a n t e st i n g a l r e a d y
e x i st i n g d a t a . Th e i n f o r m a t i o n o b t a i n e d b y d a t a
collect ion is const ant ly analy zed and it is up t o t he
r esear cher t o under st and t he m eaning of such dat a,
fr om w hich a new t heor y appear s.
I t is im por t an t t o em ph asize t h at t h e dat a
c o l l e c t e d a r e c o m p a r a t i v e l y a n d c o n t i n u o u s l y
analy zed, enabling t he r esear cher t o under st and it s
m ean in gs, w h ich is at t h e sam e t im e der iv ed f r om
social int er act ion, fr om t he par t icipant ’s per spect iv e.
Resear ch d ev elop m en t
A l l m e t h o d o l o g i c a l p r o c e d u r e s f o l l o w e d
w h ich deals w it h Resear ch Nor m s I n v olv in g Hu m an
Bein g s. Th e r esear ch p r oj ect w as ap p r ov ed b y t h e U n i v e r s i t y ’ s Re s e a r c h Et h i c s Co m m i t t e e a n d
af t er w ar d s an act iv e sear ch b eg an f or ch ild r en in doct or’s office, Specialized Cent ers, t he Pediat rics Unit
of a m id- sized hospit al of a cit y in t he int erior of t he St a t e o f Sã o Pa u l o , a s w e l l a s t h e p a r t i c i p a n t s
in d icat in g ot h er ch ild r en t o p ar t icip at e. Telep h on e cont act was est ablished wit h t hose responsible for t he
children, at w hich t im e t he research proposal and it s o b j e c t i v e w a s e x p l a i n e d . D a t a c o l l e c t i o n w a s
p er f or m ed f r om Sep t em b er of 2 0 0 1 t o Ju ly 2 0 0 2 .
I n t er v iew s, as w ell as t ap in g , w er e d on e w it h t h e ch i l d r e n ’ s a cce p t a n ce a n d co n se n t a n d a l so w i t h
for m al w r it t en par en t au t h or izat ion . Th e in st r u m en t o f d a t a co l l ect i o n i n t h i s r esea r ch w a s t h e sem i
-st r u ct u r ed in t er v iew , w h er e t h e qu e-st ion pr esen t ed w a s : “ w h a t i s i t l i k e f o r y o u t o l i v e w i t h d i a b e t e s?”
Aft er t he init ial quest ion, t he int er v iew w as
direct ed at com prehending t he child’s experience, t hat is, w hat w as it lik e discov er ing he/ she had diabet es,
t he changes t hat cam e aft er t he diagnosis, how such
ch an ges w er e con f r on t ed, w h at w as t h e ex per ien ce like and t he feelings t hat perm eat ed t hat experience.
The dat a w er e gr ouped accor ding t o t he sim ilar it y of m eanings, and t his began t o originat e t he cat egories.
The int erviews st opped when t he report s did not show an y n ew ex per ien ces.
RESULTS
Th e sam ple gr ou p of t h is in v est igat ion w as
com posed of 1 1 ch ildr en aged fr om 7 t o 1 2 , an d a 14- year old adolescent , indicat ed by one of t he fam ilies
who dem onst rat ed int erest in part icipat ing in t he st udy. That is t he r eason “ childr en” is used t o denom inat e
t h e p ar t i ci p an t s o f t h e i n t er v i ew , si n ce t h e g r eat m aj or it y w er e childr en. 9 of t he par t icipant s w er e of
t he fem inine gender and 3 of t he m asculine gender. The t im e of diagnosis of t he pat hology in t his gr oup
v a r i e d f r o m 1 t o 7 y e a r s, b e i n g t h a t 8 ch i l d r e n
discov er ed t he illness dur ing school y ear s.
A t ot al of 7 t h em es w er e id en t if ied in t h e
c o l l e c t e d d a t a . Th e y w e r e : “ Ex p e r i e n c i n g s o m e t h i n g u n e x p e c t e d ” , “ F a c i n g a h a r s h r e a lit y ” , “ Be in g a f r a id of w h a t is h a p p e n in g ” , “ Liv in g u n d e r co n t r o l” , “ Tr y in g t o a d a p t t o a n e w r e a lit y ”, “M a t u r in g w it h t h is e x pe r ie n ce ”, “Look in g a t t h is illn e ss d if f e r e n t ly ”.
Th e t h em es ar e m ade- u p of cat egor ies an d
su b- cat egor ies accor din g t o m ean in g.
Ex per ien cin g som et h in g u n ex pect ed
Her e t he childr en r elat e how t he illness w as
discov er ed, how diabet es becam e par t of t heir liv es.
Aft erwards t hey begin t o live wit h som et hing t hat was
u n ex pect ed… Th e ch ildr en t h en descr ibe t h e cou r se
of discovering t he illness, how t heir body felt different
and not iced t hat som et hing w as going on.
I t was like t his… I was feeling really bad. I kept on faint ing, I felt bad, lim p, dizzy, and I t rem bled ( I nt erview 7) .
A f t e r w a r d s t h e y u n d e r w e n t m e d i c a l
con su lt at ion s, ex am s, an d at t im es h osp it alizat ion ,
som et h in g t h at gen er at es m om en t s of ex pect at ion s
and anguish. Then t he children received t he news t hat
t hey had diabet es, which not only conveyed t he result ,
but carried t he im pact of knowing t hat t hey were sick.
And above all, knowing t hat t hey now have a disease
t hey know lit t le of and do not know what it m eans. I t
i s a s a d m o m e n t , a m o m e n t o f h u r t . Th e y a r e
em ot ion ally sh ak en . Th ey ar e af r aid, an gr y, f eelin g
bad about t he whole t hing. They feel t hey are t hreading
on t hin ice.
( ...) I was confused; I didn’t know what diabet es was … Why couldn’t I eat cake or drink t ea or m ilk? Then I asked t he nurse t o explain it t o m e, but she explained it in a way I couldn’t underst and. ( I nt erview 4) .
I suffered a lot at t hat t im e. I t all happened so quickly. ( I nt erview 7) .
Facing a har sh r ealit y
Relat es t he difficult ies childr en w ent t hr ough
at t he beginning of t he experience wit h diabet es: t he
body t hey knew before is not t he sam e, t he im pact of
ev er y t hing t hey could do befor e and no longer can,
hospit alizat ions and feelings r elat ed t o t his, such as
r ev olt an d lon elin ess, b eg in n in g t o u n d er st an d t h e
i l l n ess af t er i t i s d i sco v er ed . Th ey t al k ab o u t t h e
b ar r ier s an d lim it at ion s r eg ar d in g t h e d iet , in su lin
a p p l i c a t i o n , a s w e l l a s t h e d a i l y s t r u g g l e w i t h
t hem selv es, t he feeling of alw ay s being t est ed.
Ah, hold back, resist candies. That is t he only really hard t hing for m e. Using insulin everyday is also hard ( I nt erview 3).
The children begin t o recognize body language
as a result of self- knowledge gained t hroughout t im e.
Th ey alr eady k n ow t h e m ean in g of a h eadach e, or
want ing t o go t o t he bat hroom all t he t im e or drinking
w at er.
Oh darn body. When t he diabet es goes up, m y body aches, m y back hurt s, I feel really t ired. ( I nt erview 2) .
When it is high I feel like going t o t he bat hroom all t he t im e, always drinking wat er ( ...) . Today I feel bad. Yest erday and last night I went to the bathroom a lot. I have gone to the bathroom 4 t im es since last night ( I nt erview 2) .
D eco m p en sat i o n s d o n o t al w ay s g en er at e
n ot iceable sy m pt om s.
I don’t feel it . At t he beginning I felt . I shook and felt hungr y. Not now , if I ’m feeling bad som eone else not ices it because I st art t o look really pale and colorless. I f nobody sees it , neit her do I ( int erview 12)
Such harsh realit y brings in new sit uat ions t o
t heir day- t o- day life. They are up against t hings t hey
do not under st and, such as w hy t he r est r ict ions, t he
possible causes of t he disease, t he need t o becom e
aware of his/ her own body, of t he inst abilit y of such a
d i sease.
Well, generally t he doct ors and people t hat know t his illness and t he t herapist s, t hey t old, A. once t hat m y diabet es is em ot ional, but I don’t really know what is em ot ional diabet es ( I nt erview 4) .
I have no idea… I t st ops t o funct ion… I don’t underst and why m y pancreas don’t funct ion anym ore ( I nt erview 8) .
I t hink it com es from t he blood. My dad has diabet es, it dangerous t o cat ch diabet es ( …) I guess it ’s a “ t ype” of blood ( …) I t ’s dangerous t o cat ch it because she ( m ot her) has a relat ive wit h diabet es also. I f t here isn’t a relat ive wit h it , t hen it doesn’t happen ( I nt erview 2) .
As a result , children realize t hat t hey cannot
do w hat t hey could do befor e.
Oh, I used t o ride bicycle and run a lot . Not anym ore, I get t ired really fast . I t ’s t iring, you know? Som et im es, when I ride a bicycle m y legs go lim p, t hen I st op. Running also. I used t o run a lot . Now I have t o run slower... I can’t run, I don’t have as m uch energy as I used t o. I get t ired ( I nt erview 6)
Before, I used t o go everywhere and could do t hings. Now I can’t anym ore ( I nt erview 2) .
Yest erday I want ed t o go out wit h m y friends, but m y
m om didn’t let m e because m y diabet es was alt ered ( I nt erview
3 ) .
Rev olt is a com m on feelin g am on g ch ildr en
t hat liv e w it h diabet es, w hich can happen r ight aft er
diagnosis as well as wit h lengt hy follow- up. They can
becom e im pat ient and angry wit h t he insulin and lose
t heir t em per wit h t he t reat m ent , t he diet , of not being
able t o eat candies and sweet s. Also, t hey m ight want
t o leave aside t he t reat m ent because t hey cannot st and
any of it any longer.
And when I was fed up wit h diabet es, I didn’t want t o t ake insulin, anyt hing sweet t hat cam e m y way I would eat and I said: ‘This isn’t going t o harm m e, t his is j ust som et hing m ade up by m y head. I don’t have t his’. I would eat sweet s, I wouldn’t eat right before going t o school, I wouldn’t eat dinner at hom e, I wouldn’t eat anyt hing during t he day. ( I nt erview 4) .
Being afr aid of w hat is happening
This t opic brings fort h m uch of what anguishes
children living wit h diabet es. They know it is a disease
w it h ou t cu r e, bu t at t im es t h ey dou bt it . Th ey liv e
wit h t he ghost of deat h and wit h doubt s, am ong which,
so m uch infor m at ion about t he disease and w hat t o
b eliev e.
We are afraid of dying, t hose of us who have diabet es. Because som e people wit h diabet es have died. I f you eat t oo m uch candy… ( I nt erview 5) .
I f I ’m in doubt about eat ing or not eat ing, I know t hat if I can eat t hen it won’t be bad for m e. I f I can’t eat it and I do, I guess it can be harm ful for m e. Then, I prefer t o know first , t o clear m y doubt s ( I nt erview 4) .
Childr en also liv e w it h t he fear of pr ej udice,
of isolat ion f r om ot h er people, w h ich is t h e r eason
t hey do not t ell m ost people t hey have diabet es.
I don’t know. I guess... people don’t really know what it is m any t im es. Then you have t o keep on explaining, t hey keep on asking t hings; but it was m ost ly like t hat at t he very beginning, not so m uch anym ore. But I t ry not t o t alk about it . That way t hose who already know are aware, but I t ry not t o t alk about it t o anyone… I t hinks it ’s bet t er t hat way ( I nt erview 8) .
There is only one person who knows, but I t old him not t o t alk about t o anyone. ( I nt erview 2) .
Also living wit h t he fear of having an incurable
disease t hat w ill ex ist t hr oughout ev er y r elat ionship,
t hat will be t here daily for t he rest of t heir lives life,
regardless of t heir wishes. I t m eans having a disease
where t he only t hing t o do is t ake care of t hem selves,
because ev er y t hing depends on t his cont r ol, not on
t he cur e.
Oh, it ’s really hard. To know t hat I ’ll have t o live wit h t his for t he rest of m y life, not eat ing sweet s, I ’m get t ing used t o t his, it ’s alm ost 3 years now. I ’m adapt ing… ( I nt erview 7) .
Liv ing under cont r ol
Th is t opic com pr ises t h e cat egor ies r elat ed
t o t he child’s at t em pt at get t ing used t o a new life. I t
is w here he t alks about t he cont rol of t he disease in
it s different scopes, from t he diet t o doing exercises;
cont r ol w hich is in r egar ds t o m onit or ing t he disease
and life by a set of rules.
I t ’s j ust t hat I don’t like t o walk ( ...) Like, t here is physical educat ion at school, t hen I do it . Except t hat at hom e, I don’t do it m uch. Like, t o walk by m yself, well t hen I don’t do it ( int erview 8) .
A l s o , h a v i n g t o t a k e i n s u l i n e v e r y d a y,
so m e t h i n g ch i l d r e n d i sl i k e d o i n g , b u t k n o w i t i s
necessary. Moreover, and oft en, t o face daily t he fear
of t he needle or of applying it t he wrong way.
Well, at t he beginning I didn’t want t o. I cried every t im e I had t o apply insulin, I didn’t like t o do it . But now, you know, I know I have t o, so I do it ( I nt erview 6) .
The only t hing I dislike is t o t ake insulin, som et im es it leaves a m ark when it hit s a vein, it burst s, t hen it leaves a bruise. And I don’t like t o do it in t he belly because it leaves lit t le bum ps… ( I nt erview 8) .
I t also descr ibes t h e dif f icu lt y of n ot bein g
able t o eat sw eet s, som et hing t hey loved, as w ell as
t h eir an x iet y, fear s an d w h at ex t en ds t h r ou gh su ch
ex per ien ce, as f or ex am ple, t h e f eelin g of gu ilt f or
not cont r olling t hat longing.
Som et im es I see som eon e eat in g can d ies an d I
t hink : ‘Oh, I used t o love t hat , now I can’t eat it any m or e’.
Then I get t his craving ( I nt erview 4) .
…Because I can’t eat sweet s, t hat ’s all. I used t o only worry about sweet s ( …) And I guess I only t hink about candies, not t oo m uch wit h m y healt h ( …) I can’t get over t hat craving ( I nt erview 8) .
Trying t o adapt t o t he new realit y
The children dem onst rat e t he m ot ion in search
of adequacy in t he experience of living wit h diabet es.
I n t h i s case, t h ey t r y t o n o t t h i n k m u ch ab o u t i t
because t hey becom e sad and so t ry t o m ove on and
sim ply v iew diabet es as a disease t hey hav e t o liv e
w it h.
Oh, before, I didn’t accept having diabet es, I t hought it was t he worst t hing in t he world. Then I st opped t o t hink a lit t le and I said: ‘Gosh, t here are a person t hat don’t have a leg, who m ove around in a wheel chair and t hat is a lot worse’. A person who knows t hat in a few years or a few days won’t be here anym ore ( I nt erview 4) .
Then I t ry t o do m y own t hings, even forget
about it , I t ry t o st udy, am use m yself… ( I nt erview 7) .
Th u s, t h e y u n d e r g o t r e a t m e n t s a n d se e k
professional help. Oft en, even believing in t hings t hey
ar e not sur e about , but som et hing t hat r eliev es t he
su f f er in g .
My m om and I went t o t herapy. I already st opped. I t was last year, and t he year before t hat , every Tuesday ( …) I t was like t alking about everyt hing, you know? And it last ed about an hour, an hour and a half, j ust t alking. Then at t he end she asked m e t o draw or play a gam e, you know, t o see if t he kid could t ell m ore lat er ( I nt erview 10) .
Mat ur ing w it h t he ex per ience
At t his st age, children wit h diabet es begin t o
not fight wit h t hem selves everyday, t hat is, wit h t heir
desires, wit h t heir fears, t heir com m it m ent s and needs.
They face all of it as som et hing t hat is part of t hem ,
and since t hey have t o accept it , t hey t ry t o do it t he
best w ay possible. As childr en say, “ you get used t o
it ” wit h all of it .
I cont inued t o go out . To Cancun, t o Abasc, t o t he m all. I guess you end up get t ing used t o it ( I nt erview 7) .
Also, r ealizing t hat not accept ing it w ill only
m ake t he experience wit h t he disease becom e harder
and will not help in any way.
Oh well, I guess t hat resist ing won’t help at all. Maybe it will j ust m ake t hings worse ( …) Then I st art ed t o not being so upset wit h people and wit h diabet es ( I nt erview 4) .
I have t o accept it and t hat ’s it ( I nt erview 3) .
The childr en cont inue t r y ing t o adapt t o t he
new needs, learning t o live wit hout sweet s, t o cont rol
t he am ount of cert ain foods and t o choose ot her foods,
t o apply insulin, t o t ake care of t heir body. Ult im at ely,
t o t ake care of t hem selves, as if t his were not a bad
t hing, but som et hing necessar y for t heir w ell being.
I have good cont rol of m y food… At 10 o’clock I eat a fruit , t hen I have lunch at 11: 30... ( I nt erview 4) .
Oh, t hey say t hat I have t o t ake really good care of m y feet . I wash t hem , I dry in bet ween t he t oes, I let m y m om clip m y t oenails so t hey won’t inflam e ( I nt erview 8) .
At t his st age childr en dem onst r at e t he need
t o u n d er st an d t h e d isease w h ich g oes b ey on d t h e
physical and biological lim it s: it is t o look at God for
answers t o such quest ions, put t ing him as a conduct or
of everyt hing t hat happens in t he lives of people. Thus,
it is bet t er t o accept it , because t hey believe t hat God
knows what he does and if He chose t hem , it is because
Oh, m aybe a fact t hat t ouched m e is t hat it had t o happen one way or another ( …) He ( God) m aybe m ade it happen to show m e som et hing ( …) So, if it had t o happen wit h m e, it did and I have only t o accept it and know how t o cont rol it ( I nt erview 4) .
I can’t say: ‘I don’t w ant t o have diabet es, I ’m not
going t o’. Who orders it is God, He know s w hat he is doing, you
know ? I t has t o be t hat w ay ( I nt erview 10) .
View ing t he disease in a differ ent w ay
Th i s d e a l s w i t h t h e ch i l d r e n ’ s ch a n g e o f
per cept ion about t he disease and about t hem selv es.
They begin t o have at t it udes t hey did not have before.
All of t his cont ribut es t o living bet t er and feeling happier
about t hem selves and ot hers. They accept t hey have
diabet es and ar e not asham ed of it .
Oh, it doesn’t m at t er t alking about it , does it ? My friends know it , t he ent ire class knows it , I guess ( I nt erview 8) .
They know it . So t he t eacher lets m e go and drink water. The t eacher doesn’t let t he kids go out and drink t oo m uch wat er, only m e. They asked her why, t hen t he t eacher t old t hen I had diabet es ( I nt erview 9) .
A f a c t o r t h a t h e l p s a t h a v i n g a b e t t e r
perspect ive of t he disease is knowing t hat ot hers also
h av e t h is disease, t h ey ar e n ot t h e on ly on es w h o
h a v e d i a b e t e s, i t d i d n o t o n l y h a p p e n t o t h e m .
Fur t her m or e, in liv ing w it h diabet es t her e ar e ot her
people w ho par t icipat e, w ho ar e concer ned, and w ho
h elp .
I t ’s cool t o know everyone worries about m e. I also get worried about t hem when som et hing happens, you know? That ’s cool… ( I nt erview 10) .
The day I found out , m y grandm a spent R$ 100,00 on t hings for m e. She brought t he t hings hom e for m e ( I nt erview 6) .
Th e n t h e c h i l d r e n b e g i n t o p e r c e i v e
t hem selv es sim ilar t o ot her s, no longer as a per son
who has an incurable disease. I t is t o perceive t hat it
i s n o t b eca u se t h ey h a v e d i a b et es t h a t t h ey a r e
dif f er en t f r om ot h er people. Th ey f eel t h e sam e as
t h eir fr ien ds an d sch oolm at es w h o do n ot h av e t h e
disease. This m eans t hat diabet es does not alt er t heir
w ay of being and t he possibilit y of being happy and
being able t o live as ot her people do.
Oh, I don’t t hink t here’s m uch difference. I f I ’m wit h 5 t eens and t hey t reat m e t he sam e, I won’t care because I ’ll feel t he sam e as t hem ( I nt erview 3) .
Everybody is t he sam e as everybody, nobody should be t reat ed different ( I nt erview 3) .
( …) At least I ’d like t o be t reat ed t he sam e as everyone else. I ’d like t o at least feel t he sam e as ot her people ( I nt erview 4) .
DI SCUSSI ON OF THE RESULTS
Based on t he r esult s in t he pr esent w or k , it
can b e seen t h at ch i l d r en l i v i n g w i t h d i ab et es g o
t hr ough m any st ages. The m om ent of t he diagnosis
seem s t o be very st rong for t hem . I t is when diabet es
seem s t o ch an ge t h eir en t ir e life an d t h ey w on der :
“ w hy w it h m e?”. Ver y of t en ch ild r en t r y t o b lam e
people and t hings, t r y ing t o find j ust ificat ion for t he
f act . Fear, d esp air, in secu r it y an d ev en r ev olt ar e
feelings t hat children clearly relat e. Thus, it is agreed
on t hat “ when a person is st ricken wit h a disease wit h
c h r o n i c c h a r a c t e r i s t i c s , t h i s p e r s o n e n c o u n t e r s
ch an g es i n h i s l i f est y l e, w h i ch ar e b r o u g h t o n b y
cert ain rest rict ions result ing from t he act ual pat hology,
t he t herapeut ical requirem ent s and t he clinical cont rol,
besides t he possibilit y of recurrent hospit alizat ions”( 10).
A st rong charact erist ic of t his group of children
was t he before and aft er com parison when t he disease
w as discov er ed, f ocu sin g on t h e im m ediat e lack of
freedom : t o eat what t hey want , t o go out of t he house
wit hout having t o worry wit h insulin or having t o feel
af r aid of f eelin g b ad , t o r u n an d p lay. Th ey n ot ice
t h at t h eir b od y is n o lon g er t h e sam e. Liv in g w it h
diabet es causes deep t r ansfor m at ions in t heir w or ld,
n e e d i n g t o l e a r n t o l i v e w i t h ce r t a i n l i m i t a t i o n s,
sit uat ions and new rout ines. Children and adolescent s
w it h diabet es hav e t heir or dinar y liv es m odified, and
each new phase of liv ing w it h diabet es has it s ow n
charact erist ics t hat require st rengt h, change of habit s,
adapt at ion at t it udes ( 11). Ther efor e, adapt at ion t o a
ch r on ic d isease at ch ild h ood is a com p lex p r ocess
t hat involves ext er nal and int er nal fact or s, w hich ar e
also influenced by age and gr ow t h( 12).
I n view of Sym bolic I nt eract ionism , it can be
seen t hat living w it h diabet es also depends on social
in t er act ion s t h at ar e p ar t of ch ild r en ’s liv es. Food
r est r ict ion , f or ex am p le, is f ar m or e d if f icu lt w h en
children are int eract ing wit h ot hers who do not share
of t his sit uat ion.
On e can n ot ice, b y r ead in g t h e accou n t s
given by children t hat t he m eanings at t ribut ed t o t he
experience m odify wit h t he passing of t im e. The m ore
t im e passes, t he m ore adapt ed t hey are t o t reat m ent
and aw ar eness of t he disease.
I t is believ ed t h at h ear in g ou t ch ildr en an d
giving t hem t he opport unit y t o t alk about t heir illness
an d feelin gs is im por t an t for t h eir self- est eem . Th e
a u t h o r s co m p a r e d ch i l d r e n a n d a d o l e sce n t s w i t h
sel f - i m ag e an d sel f - est eem . I t w as d et ect ed t h at
ch ildr en an d adolescen t s w it h diabet es sh ow ed low
self - est eem an d a poor self - im age w h en com par ed
t o t he cont rol group( 13). Therefore, t o list en t o t hem
does not exhaust t he ext ent of help given t o children
w it h d iab et es. I t is im p or t an t t o u n d er st an d t h eir
b eh av ior, t h eir f ear s an d an g u ish es an d g iv e t h em
su ppor t in t h e m an y scopes of su ch an ex per ien ce,
which first com prises t he physical, t he em ot ional and
t he social par t . Ther efor e, t he need t o be educat ed
by a m ult i- pr ofessional t eam specialized in t his ar ea
becom es ev iden t .
I t has been agreed on t hat it is not an easy
t ask, since educat ion m ust be view ed under different
aspect s, am ong t hem t he different beliefs, values and
m y t hs( 14).
How ev er, k eeping t he childr en in v iew, it is
w or t h em phasizing t hat t he cent r al point should not
be only t he diagnosis. That is, it is not enough t o view
t h e m a s s o m e o n e w h o h a s d i a b e t e s , b u t a l s o
com prehend t he com plexit y of t heir experience in t he
d if f er en t am b it s of t h eir ex ist en ce, sin ce t h ey ar e
biopsy ch osocial bein gs, in clu din g t h e f am ily aspect .
A st u d y i n v est i g at i n g co n f l i ct s o f ad o l escen t w i t h
m et illus diabet es w it h t heir par ent s( 15) dem onst r at ed
t hat t he per cept ion of t he adolescent s r egar ding t he
p a r e n t ’ s p r e o ccu p a t i o n , i n t r u si v e a n d r e p r e ssi n g
b e h a v i o r, a s w e l l a s t h e i r f o cu s i s i n t h e f u t u r e ,
con t r ar y t o t h e ad olescen t s, w h ose f ocu s is in t h e
pr esent . These ar e t he aspect s t hat ar e st r ongest in
m anaging diabet es m ellit us t y pe 1.
Th er ef o r e i t sh o u l d b e co n si d er ed t h at t o
m inist er assist ance t o children wit h diabet es it m eans
goin g bey on d blood glu cose con t r ol an d car es w it h
t he food and phy sical ex er cises. Assist ance for esees
hearing t hem out and underst anding t heir act ions and
behaviors, t heir escapes and fears, t heir way of dealing
wit h diabet es, as well as how t hey confront it .
FI NAL CONSI DERATI ONS
Nu r sin g sh ou ld b e p r esen t t h r ou g h ou t t h e
ent ir e pr ocess, assist ing, guiding and int er v ening in
accordance t o t he child’s needs. From t he m om ent of
d i a g n o s i s a n d t h e b e g i n n i n g o f l i v i n g w i t h t h e
p a t h o l o g y, t h e ch i l d r en ’s em o t i o n a l sh o ck ca n b e
worsened by t he fact t hey do not know what it m eans
t o have diabet es and what im plicat ions it will have in
t heir ever yday lives. Som e of t he childr en’s account s
show such suffer ing v er y clear ly and t her efor e, how
im por t ant it becom es t hat t he pr ofessionals t hat ar e
r en d er i n g a ssi st a n ce, i n cl u d i n g t h e n u r si n g st a f f,
ex plain , gu ide an d r eassu r e t h em , n ev er f or get t in g
t o t ak e in t o con sider at ion t h eir dev elopm en t , u sin g
u n der st an dable lan gu age.
During t he process of m at uring and adapt at ion
t o t he new needs, t he nur se can pr om ot e em ot ional
suppor t , assessing difficult ies and sear ching for w ays
t o deliver t his, as well as educat ing in order t o prevent
com p licat ion s.
Fur t her m or e, consider ing t he childr en’s need
of liv ing t he pr esent and t he par ent ’s look ing at t he
f u t u r e , t h e p r o f e ssi o n a l n u r se ca n m a k e h i m se l f
p r e se n t b y h e l p i n g t h e m a i n p a r t i ci p a n t s o f t h i s
e x p e r i e n ce t o f i n d e q u i l i b r i u m , a t f i r st se e m i n g
div er gent , but t hat som ehow m ust conv er ge for t he
success of t he t r eat m ent .
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