PARTI CI PATI NG I N A SUPPORT GROUP: EXPERI ENCE LI VED BY W OMEN
W I TH BREAST CANCER
Cleoneide Paulo Oliv eir a Pinheir o1 Raim unda Magalhães da Silv a2 Mar li Villela Mam ede3 Ana Fát im a Car v alho Fer nandes4
Pin h eir o CPO, Silva RM, Mam ede MV, Fer n an des AFC. Par t icipat in g in a su ppor t gr ou p: ex per ien ce liv ed b y w om en w it h br east cancer. Rev Lat ino- am Enfer m agem 2008 j ulho- agost o; 16( 4) : 733- 8.
The goal of t he st udy was t o underst and t he m eaning of support groups in t he life of wom en wit h breast cancer. I t is a qu alit at iv e st u dy w it h 3 0 m ast ect om ized w om en w h o belon ged t o six su ppor t gr ou ps in t h e cit y of For t aleza, Cear á. Dat a w er e collect ed w it h sem i- st r uct ur ed int er v iew s, or ganized and analy zed based on t he int eract ionism concept . The result s charact erized t he support groups as a m echanism t o cope wit h t he sit uat ion and t o overcom e t he suffering derived from t he diagnosis and t reat m ent of t he breast carcinom a. The socializat ion of t he exper iences facilit at ed t he sear ch for assist ance in t he suppor t gr oups, since shar ing t he pr oblem s w it h m ast ect om ized w om en w as a w ay t o pr eser v e a high self- est eem , hav e fait h and ov er com e som e difficult ies. Part icipat ing in t he group provided well- being and a different iat ed care, since it was considered a way t o know, accept and under st and t he disease and it s cur e, facilit at ing t he socializat ion of ideas.
DESCRI PTORS: br east neoplasm s; m ast ect om y ; gr oup st r uct ur e
PARTI CI PACI ÓN EN UN GRUPO DE APOYO: EXPERI ENCI A DE MUJERES CON
CÁNCER DE MAMA
En est e est u dio, se bu scó com pr en der el sign if icado de los gr u pos de apoy o a las m u j er es con cán cer de m am a. Se t rat a de est udio cualit at ivo con 30 m uj eres m ast ect om izadas pert enecient es a seis grupos de apoyo de la ciu dad de For t aleza- Cear á. Los dat os r ecolect ados por m edio de en t r ev ist a sem i- est r u ct u r ada f u er on or ganizados y analizados baj o el m ar co t eór ico int er accionist a. Los r esult ados car act er izar on los gr upos com o un m ecanism o par a el enfr ent am ient o de la sit uación y de super ación del sufr im ient o que se or iginan en el diagnóst ico y t r at am ient o del car cinom a m am ar io. La socialización de las ex per iencias facilit ó la búsqueda de au x ilio en los gr u pos de apoy o, y a qu e com par t ir pr oblem as en t r e las m u j er es m ast ect om izadas, er a u n a form a de m ant ener la aut o- est im a elevada, de creer, de confiar y superar algunas dificult ades. La part icipación en el grupo proporcionaba bienest ar y un cuidado diferenciado, ya que fue considerada una form a de conocer, acept ar y com pr ender la enfer m edad y su cur a, facilit ando la socialización de las ideas.
DESCRI PTORES: neoplasias de la m am a; m ast ect om ia; est r uct ur a de gr upo
PARTI CI PAÇÃO EM GRUPO DE APOI O: EXPERI ÊNCI A DE MULHERES COM
CÂNCER DE MAMA
Pr ocur ou- se com pr eender o significado sobr e os gr upos de apoio na vida das m ulher es com câncer de m am a. Tr at a- se de est u do qu alit at iv o com 3 0 m u lh er es m ast ect om izadas, per t en cen t es a seis gr u pos de apoio da cidade de For t aleza, Cear á. Os dados colet ados por m eio de ent r ev ist a sem i- est r ut ur ada for am or ganizados e analisados sob fundam ent ação int er acionist a. Os r esult ados car act er izar am os gr upos com o m ecanism o par a o enfrent am ent o da sit uação e de superação do sofrim ent o, oriundo do diagnóst ico e t rat am ent o do carcinom a m am ár io. A socialização das ex per iências facilit ou a busca de aux ílio nos gr upos de apoio, pois com par t ilhar problem as ent re as m ulheres m ast ect om izadas era um a form a de m ant er a aut o- est im a elevada, de acredit ar, d e con f i ar e su p er ar al g u m as d i f i cu l d ad es. A p ar t i ci p ação n o g r u p o p r op or ci on av a b em - est ar e cu i d ad o difer enciado, pois foi consider ada um a for m a de conhecer , aceit ar e com pr eender a doença e cur a, facilit ando a socialização das idéias.
DESCRI TORES: neoplasias m am ár ias; m ast ect om ia; est r ut ur a de gr upo
1 Professor, Faculdade I nt egrada do Ceará, FI C, Brasil, e- m ail: [email protected]; 2 Full Professor, Universit y of Fort aleza, UNI FOR, Brazil, e- m ail: rm [email protected]; 3 Full Professor, Universit y of Sao Paulo at Ribeirao Pret o College of Nursing, WHO Collaborat ing Cent er for Nursing Research Developm ent , Brazil, e- m ail:
m avim [email protected]; 4 Professor, Federal Universit y of Ceará, Brazil, e- m ail: [email protected].
I NTRODUCTI ON
I
n Brazil, breast cancer is t he m ain cause of deat h am ong w om en. Of t he 4 6 7 , 4 4 0 new cases ofcan cer d iag n osis p r ed ict ed f or 2 0 0 6 , b r east can cer
was t he second m ost incident , wit h 48,930 new cases.
I n t he st at e of Cear á, 34.82 cases ar e est im at ed for
every 100,000 wom en, wit h 1,460 cases in t he st at e
and 660 in t he cit y of Fort aleza( 1).
Breast cancer is charact erized as a slow, silent
and st ealt hy disease but , if it is diagnosed ear ly and
r ecei v es ap p r o p r i at e t h er ap eu t i c i n t er v en t i o n , t h e
m y t h s, g r ief an d u n cer t ain t ies t h at st em f r om t h e
p a t h o l o g y a n d i t s t r e a t m e n t c o u l d b e g r e a t l y
d i m i n i sh e d . I n l o w - i n co m e so ci a l g r o u p s, w o m e n
r eaffir m t he m or al/ r eligious connot at ion of cancer as
a deadly and punit iv e disease( 2).
Re g a r d l e s s o f t h e t h e r a p e u t i c p r o c e s s ,
“ ca n ce r ” p r o v o k e s n e g a t i v e f e e l i n g s, m a k i n g t h e
w om an see h er self as d if f er en t an d ex clu d ed f r om
so ci e t y w h e n st r u ck b y t h i s d i se a se . I n o r d e r t o
m inim ize t his im age, it is possible for t he per son t o
j oin a support group, so t hat she m ay be able t o share
ex per iences w it h ot her w om en under going t he sam e
sit uat ion, and t hen underst and t hat she will be able t o
face obst acles and ov er com e lim it at ions. I t w ill also
help her not ice t hat she is not alone, t hat she m ay
ex change ex per iences and r egain t he w ill t o liv e.
Despit e t h e pr ov en ben efit s of par t icipat in g
in support groups, it was observed t hat t here are few
spaces t hat pr opose t hese act iv it ies and t hat , w hen
t hey exist , t he people who need t hem m ay not becom e
inv olv ed. Ther e ar e sev er al quest ions about t he r eal
reasons for such an at t it ude but , part icularly, it would
be of int er est t o know : w hat does “ par t icipat ing in a
suppor t gr oup” m ean for w om en w it h br east cancer ?
And how do t hey perceive it ?
S o m e f a c t o r s m a y i n h i b i t t h e w o m a n ’ s
insert ion in support groups, am ong which t he aut hors
con sider t h e m an y in v asiv e pr ocedu r es, w h et h er in
t h e h ospit al or ou t pat ien t en v ir on m en t ; t h e f ear of
s o c i a l a n d p h y s i c a l c o n s e q u e n c e s / i m p l i c a t i o n s
r e su l t i n g f r o m m a st e ct o m y ; a n d t h e o f t e n p o o r
socioeconom ic condit ions, w hich m ak es it im possible
for t hem t o par t icipat e in t he gr oup r egular ly.
So m e w o m en su b m i t t ed t o t h er a p eu t i c
procedures t hat lead t o m ut ilat ion sought ways t o live
with their new health condition with dignity. For that, they
seek help in inst it ut ions lik e associat ions, healt hcar e
services, support groups or even their fam ily( 3).
I n t h e e x p e r i e n c e w i t h w o m e n w h o
p a r t i ci p a t e i n a su p p o r t g r o u p , t h e a u t h o r s h a v e
obser v ed on sev er al occasions t hat , at t he m om ent
t hey j oin t he group, wom en feel solit ary, isolat ed and
asham ed, especially if t hey have t o t alk about issues
r eg ar d in g b od y im ag e, h ealt h an d d isease. I t w as
d u r i n g t h i s e x p e r i e n ce w i t h a su p p o r t g r o u p , b y
list en in g t o t h eir st or ies, t h at t h e au t h or s b ecam e
aware of t he following quest ions: what do t hese groups
offer for t he socializat ion of w om en? Which cont ent s
st ruct ure t he sym bolic universe for wom en wit h breast
cancer, considering t he part icipat ion in support groups?
Wh y d o t h ey seek an d p ar t icip at e in t h e act iv it ies
offer ed by t he suppor t gr oups?
Wit h t h e g oal of f in d in g an sw er s f or t h ese
quest ions, t he st udy aim ed t o underst and t he m eaning
of t he support groups in t he life of wom en wit h breast
can cer.
METHOD
This is a descr ipt iv e st udy w it h a qualit at iv e
a p p r o a ch , u n d e r a so ci o cu l t u r a l p e r sp e ct i v e t h a t
fav or ed t he under st anding of t he subj ect iv e w or ld of
a c t i o n s , r e a c t i o n s , a s p i r a t i o n s , b e l i e f s a n d l i f e
e x p e r i e n c e s o f w o m e n w i t h b r e a s t c a n c e r w h o
par t icipat e in suppor t gr oups( 4).
Thir t y ( 3 0 ) w om en, m ast ect om ized because
of br east cancer, par t icipat ed in t he st udy, r eceiv ing
assist ance in t he six support groups t hat exist in t he
cit y of Fort aleza. Each group was represent ed by five
( 5) wom en, wit h up t o five years of m ast ect om y, able
t o be int erviewed and part icipat ing in support groups
for at least t hree m ont hs ( 12 sessions, when t he group
h ad w eek ly m eet in g s, or t h r ee session s in case of
m on t h ly m eet in gs) .
The six support groups for wom en wit h breast
cancer ar e char act er ized as being non- gov er nm ent al
organizat ions, and/ or associat ed t o public and privat e
inst it ut ions, offering pat ient s psychological support and
p h y si cal r ecov er y. I n so m e, a t eam o f v o l u n t eer s
par t icipat es, m ade up by phy sicians, social w or k er s,
n u r s e s , o c c u p a t i o n a l t h e r a p i s t s a n d p h y s i c a l
t h er apist s.
D a t a c o l l e c t i o n w a s p e r f o r m e d w i t h
p r ev i o u sl y - sch ed u l ed , sem i - st r u ct u r ed i n t er v i ew s,
last ing appr oxim at ely 20 m inut es, in a har m onic and
relaxed at m osphere. One guiding quest ion w as used:
g r o u p ? Th i s q u e s t i o n w a s t h e s t i m u l u s f o r t h e beginning of t he int erview and m ade it easier for t he
r espondent s t o socialize t heir life ex per iences. Th e d i a l o g u e s w e r e r e c o r d e d w i t h t h e
aut horizat ion of t he int erviewees, in an adequat e place of t h eir ch oice. Th e con t en t of t h e in t er v iew s w as
t ranscr ibed int egrally, not ing ex pr essions of feelings, cr y i n g a n d i n t o n a t i o n s, a i m i n g t o a b so r b a l l t h e
i n f o r m a t i o n , p a u se s a n d n o i se co n t a i n e d i n t h e r ecor d in g s.
This appr oach helped t he aut hor s t o am plify t h e r e s e a r c h e r - s u b j e c t r e l a t i o n s h i p a n d c r e a t e
quest ions about experiences wit hin t he group and t heir
repercussions in social and fam ily life. Dat a collect ion w as int er r upt ed aft er int er v iew s w it h fiv e w om en of
e a c h g r o u p , b e c a u s e c o i n c i d e n c e s a m o n g t h e i r a n s w e r s h a d b e e n o b s e r v e d , w h i c h r e s p o n d e d
sat isfact or ily t o t he pr oposed goals.
The t ranscribed int erview s w ere read several
t i m e s, w i t h t h e g o a l o f o r d e r i n g co n v e r g e n t a n d
d i v e r g e n t i d e a s a n d c o n t e n t s , b u i l d i n g a com pr ehension of t he m eanings of suppor t gr oups in
t h e per spect iv e of w om en , an d t h e m ean in g of t h e gr oups for t heir liv es.
For syst em at ic dat a organizat ion and coherent descript ion of t he ent ire m at erial obt ained, t he aut hors
decided t o u se t h em at ic con t en t an aly sis accor din g t o Bar d i n( 5 ). Th er ef o r e, i n t h e p r e- an al y si s o f t h e int erview, t he aut hors sought t o separat e sim ilar from differ ent iat ed st at em ent s, r epr esent ing basic unit s of
m eaning for t he gr oups, in t he r espondent s’ v iew s.
Un i t s o f m e a n i n g w e r e i d e n t i f i e d i n t h e ex plor at ion of t he collect ed m at er ial, put t ing sim ilar
ph r ases t oget h er an d sy m bolizin g t h e in t er per son al
and int ergroup relat ions t he part icipant s at t ribut ed as
being significant for t heir per sonal, fam ily and social d e v e l o p m e n t . Th e a n a l y s i s w a s b a s e d o n a n
in t er act ion ist ap p r oach , em p h asizin g t h e con sciou s
in t er p r et at ion of each w om an an d t h e m ean in g of gr oup int er act ion( 6).
According t o Resolut ion 196/ 96, t he research
proj ect was approved by t he Et hics Com m it t ee at t he U n i v e r s i t y o f Fo r t a l e z a ( U N I FOR) . Th e s t u d y
par t icipan t s w er e in for m ed abou t t h e im por t an ce of
t h ei r p ar t i ci p at i o n i n t h e r esear ch , assu r i n g t h ei r
anonym it y and freedom t o quit t he int erview w it hout loss of par t icipat ion in t h e gr ou p or ot h er f or m s of
h ealt h car e. Th ose w h o par t icipat ed in t h e r esear ch
signed t he Ter m of Consent and w er e infor m ed t hat t he dat a w ould be gr ouped, pr esent ed t o t hem and
published in scient ific j our nals.
RESULTS AND DI SCUSSI ON
Th e con t en t an aly sis of t h e in t er v iew s an d o b se r v a t i o n s p e r f o r m e d w i t h t h e st u d i e d w o m e n allow ed t h e au t h or s t o appr eh en d t h at par t icipat in g in support groups m eant t he possibilit y of exchanging ex p er ien ces, r eceiv in g an d of f er in g social su p p or t , s t a y i n g a w a y f r o m s o c i a l e x c l u s i o n , r e c e i v i n g infor m at ion and leisur e act iv it ies.
According t o report s from t he st udied wom en, t he par t icipat ion in suppor t gr oups for br east cancer pat ient s pr om ot es t he ex change of ex per iences w it h ot h er s u n d er g oin g sim ilar p r ob lem s, w h ich en ab les t hem t o realize t hat t hey are not alone in t his rout e:
We see t hat it didn’t happen t o m e alone, t hat t here are m any
ot hers wit h t he sam e problem.
Th e w om en r ev eal t h at t h e op p or t u n it y of sh ar in g ex per ien ces w it h people su f f er in g f r om t h e sam e pr oblem s is a w ay for t hem t o feel included in t h e g r ou p , su p p or t ed an d , f r om t h er e, b e ab le t o express feelings( 6). I n t he group, we observe and see t hat one of t hose friends also had it and is st rong, I m ean , ex ch an g in g id eas, y ou cr y , y ou d iscu ss t h e com m on pr oblem s, w e get st r onger .
Being part of a support group for wom en wit h br east cancer w as also consider ed a sour ce of social support when t hey not iced t hat t he groups worked as a base for t he cont inuit y of t he pr ocess of r ecov er y and adapt at ion t o t he new condit ion, and also as a p sy ch o p h y si ca l a n d p sy ch o so ci a l e n v i r o n m e n t o f t ransform at ion. Therefore, t he wom en added t hatt hey
are people who underwent t he sam e t hing as I did and t hat I have
t o live wit h t oday, t here’s a lot of support t o help you when you
feel t hat you’re going t o falt er.
Cancer is seen as an unpr edict able disease, ent ailing uncert aint ies about a full cure, and t his feeling i s s h a r e d w i t h o t h e r w o m e n d u r i n g m e d i c a l appoin t m en t s, am on g t h e self - h elp gr ou p m em ber s and in t he m eet ings of m ast ect om ized w om en( 7).
The wom en evidenced t he im port ance of t his gr oup ex per ience, because t hey ident ify t he w ay s of coping used by each par t icipant besides fr eedom of speech. The wom en can express what t hey t hink, feel, desire and you’re not asham ed of speaking about your problem ,
ev er y body is t h er e t o h ear y ou ou t in t h e en v ir on m en t
cr eat ed by t he suppor t gr oups.
space w h er e t h ey can f in d people t h ey con sider as
reference and role m odels for t he elaborat ion of t heir own im age and hist ory: it is t he m irror t hat we have of t he
ot her, if we can see anot her person who had t he problem , t hat we
went t hrough it well, t hen, I ’ll t ell m yself, t om orrow I ’ll be j ust
like her, I ’ll believe and work hard t o get t here.
As t h e so ci a l i za t i o n p r o cess g o es b y, t h e au t h or s ar e ex posed t o people or gr ou ps t h at t ak e t h e r ole of p osit iv e or n eg at iv e r ef er en ces. I n t h e
p r esen t st u d y, i t w a s o b ser v ed t h a t w o m en seek posit iv e r ef er en ces an d iden t it ies t o m ot iv at e t h em t o ov er com e t he difficult ies t hey hav e t o face.
The v alue of t he self- help gr oups lies in t he
fact of shar ing com m on ex per iences, pr ov iding t heir m em bers wit h an enorm ous am ount of energy, which m a y b e d i r e c t e d t o t h e d e m a n d s o f l i f e , t o r esocializat ion an d r ecov er y( 7 ). Th er ef or e, on e of t h e t hings t hat really helped m e was seeing t hat t here were ot her
wom en wit h t he sam e disease who were helping t he ot hers.
All st udied wom en highlight ed how significant it is t o part icipat e in a support group, not only for t he
em ot ion al an d social su ppor t t h ey r eceiv e, bu t also f or t h e possibilit y of leav in g t h e sit u at ion of social e x c l u s i o n a n d s e e i n g t h e m s e l v e s a s i n c l u d e d , b e co m i n g e q u a l t o o n e a n o t h e r : h e r e , d e sp i t e t h e
differences, som e wear prost het ics, ot hers had a reconst ruct ive
surgery, t hey’re all alike.
Th e s y m b o l i c u n i v e r s e , r e p r e s e n t e d b y shar ing t heir liv es w it h ot her w om en w it h t he sam e
ex p er ien ce of liv in g w it h b r east can cer an d g oin g t h r o u g h t h e s a m e t h e r a p e u t i c p r o c e s s e s , i s r ep r esen t ed , in t h e v iew p oin t of t h e w om en , b y a r ealit y ex per ienced in t he suppor t gr oups t hat helps
t he reduct ion of suffering and social isolat ion. Such a fact is evident in the following expression: They all speak the
sam e language, the sam e problem and the sam e things, like this:
when we’re in pain and the other has a sim ilar pain, we feel calm er.
This feeling of sharing grievances is com m on in t he st at em ent s of t he w om en w it h br east cancer, and t he physical pain is felt as a sensorial percept ion r elat ed t o em ot ional phenom ena and com ponent s of
per son alit y( 9 ).
Th e feelin g of pain , u su ally felt by w om en , n ot on ly p or t r ay s p h y sical su f f er in g , b u t also self -est eem an d self - im ag e, w h ich h av e b een ch an g ed
becau se of t h e pr oblem t h at cau ses so m u ch gr ief, i.e. being subm it t ed t o a surgery of breast rem oval – t he m ast ect om y. The awareness of not being t he only one t o show such feelings, t he possibilit y of dialogue,
sh ar in g f eelin gs an d r eact ion s as w ell as ex plor in g id eas ar e f or m s of t h er ap y an d of m in im izin g t h e suffer ing, shar ed in suppor t gr oups( 9).
The personal int eract ion m akes changes t hat
t u r n g r eat er in d iv id u al d ev elop m en t m or e f easib le, and t he fact of sharing experiences in support groups works as a facilit at or of physical, social and em ot ional support( 10). I t was verified t hat , out of 30 respondent s, 17 m ent ioned t he im por t ance of a m om ent t o shar e e x p e r i e n c e s . A c c o r d i n g t o t h e m , i t m a k e s in t er p er son al com m u n icat ion easier, en ab les g r ou p int eract ion and provides m eans of self- help and m ut ual
aid. They st at e t hat t he goal of t he group is t o com plet e it self m ut ually and const ant ly, and t o lear n w it h t he ot h er m em ber s f r om t h eir per son al ex per ien ces( 1 0 ). As such, t he m om ent s t o ex change ex per iences ar e
con sid er ed v alu ab le f or t h ose w h o in t eg r at e t h ese gr oups, r egar dless of t heir w ay of liv ing, being and liv ing w it h t hem selv es and ot her s.
The infor m at ion, r eceiv ed and shar ed about
t h e d i sea se, t h ei r t r ea t m en t s, r ea ct i o n s a n d si d e ef f ect s, an d t h e w ay of dealin g w it h each sit u at ion are part of t he sym bolic universe of t he st udied wom en about t he im port ance of t he group as social support .
Th e act of h elpin g, clar ify in g, in for m in g t h e w om en w h o w i l l u n d e r g o t r e a t m e n t p r o b a b l y l o w e r s t h e ex pect at ions and t ensions t hat st em fr om t heir lack of knowledge. This act should be hum anized, valuat ing
an int er nal per sonal pr ocess, encour aged by a space for collect iv e r eflect ion, coping and m obilizat ion( 11).
Accor ding t o t he st udied w om en, am ong t he act iv it ies p r op osed b y t h e g r ou p s, in f or m at iv e an d
e d u ca t i v e a ct i o n s w e r e a l so i n cl u d e d , p r o v i d i n g knowledge about t he disease and it s t reat m ent s. Such act iv it ies r einfor ce t he cont r ol ov er t heir bodies and t h e a d o p t i o n o f p r e v e n t i v e o r e a r l y d i a g n o s t i c
m easu r es, u sin g self - ex am in at ion of t h e p r eser v ed br east( 12). The need for infor m at ion w as r epr esent ed w hen w om en st at ed about t he gr oup: t her e ar e m any
t hings, lect ures, courses, and now t here is going t o be a course
t here, and it all ends up m aking a lot of t hings clear t o us.
They r epor t t hat t he gr oup enables t hem t o lear n about possible com plicat ions, ex posit ion t o r isk f a c t o r s a n d c l a r i f i c a t i o n s a b o u t t h e i r r i g h t s a s
m a st e ct o m i ze d w o m e n a n d a cce ss t o h e a l t h ca r e s e r v i c e s . Th i s p o w e r, o r i g i n a t e d f r o m a c q u i r e d k n ow ledge, also r eliev es t h e fear s t h ey ex per ien ce, since t he unknown scares t hem : We had several quest ions,
and m any t hings were m ade clear in t alks wit h t he professionals.
Th e t opics, con sciou sly assim ilat ed, pr ov ide t h e au t h o r s w i t h t h e cap aci t y o f est ab l i sh i n g f ai r reflect ions and decisions, and also t o m inim ize errat ic
cit izens becom e t he t r ansfor m er s of t heir ow n liv es,
and t his is also highly regarded by wom en, as seen in t he following st at em ent s: here t hey t each us m any t hings,
t hey t each us how t o t ake care of ourselves. I com e over t o t ake
part in t he courses, t he lect ures of people who com e here oft en.
There are also som e classes, we learn a lot about t his disease, it
relieves t he fear, and t here are always new people around.
Th is in for m at ion abou t t h e disease an d t h e answers about t he pat hology and t he t reat m ent favor
healt h prom ot ion, m aking t hem m ore independent for self- car e, for t he execut ion of ot her act ivit ies r elat ed t o t he env ir onm ent and t he fam ily. They also enable each w om an t o t r an sf or m in t o a m u lt iply in g agen t .
We t ry t o m ake it work, t o bring inform at ion t o people, so t hat we
can det ect cancer earlier.
Th e p o si t i v e e x p e r i e n ce s a r e o n e o f t h e st r en g t h s f or t h e ex ecu t i on of act i on s n eed ed f or
t reat m ent , and t hey are useful t o m inim ize t he ever-p r esen t t en sion s an d f ear s in t h ese cases, b esid es favoring t heir egos and encouraging t hem t o form ulat e a life proj ect( 13).
When ex pr essing m eanings, t he sat isfact ion e a c h w o m a n p r e s e n t e d w h e n t a l k i n g a b o u t h e r part icipat ion in t he group was rem arkable: know ing ot her
wom en wit h t he sam e problem helped m e a lot . I had t o m eet
people wit h t he sam e problem as I had so I could feel safer. I
im proved a lot when I becam e part of t he group, I feel m ore
useful, I can help ot her people.
The self- help groups aim t o help people solve
t heir problem s, since t hey are hom ogeneous in t erm s o f h a v i n g m e m b e r s t h a t e x p e r i e n c e d s i m i l a r problem s, w hich is a charact erist ic of support groups f or m ast ect om ized w om en .
An o t h e r e l e m e n t p r e se n t i n t h e sy m b o l i c universe of t he st udied wom en about t he m eaning of t h e g r o u p s f o r m a st e ct o m i ze d w o m e n w a s t h e i r r efer ence t o social int egr at ion. This happens because
a lar g e sh ar e of t h ese w om en ex p r esses t h e id ea t h a t , b y f i n d i n g t h e m s e l v e s i n t e g r a t e d i n t h e com m unit y, t hey r et ak e t heir social act iv it ies, w hich m ak es t h em pr odu ct iv e, able t o h elp ot h er s an d t o
v alu at e t h em selv es. Th e g r ou p also en ab led som e decision- m ak ing, show n as: I ’m st ill afr aid of going out ,
but t he group has helped m e a lot , aft er list ening t o som e of t hem
I felt brave enough, I go t o t he superm arket , t ake part in t he
group’s fest ivit ies and walks.
Th e p ar t icip at ion in g r ou p s of w om en w it h br east cancer m eant t hat t hey could inhabit a space t hat pr ov ides m om ent s of j oy and pleasur e as t hey
en j oy leisu r e act iv it ies, su ch as w alk s or t r ips. Th e group act ivit ies reduce social isolat ion and m any t im es im prove self- est eem( 14), as seen here: I t ook part in t he
t rip t o Rio Grande do Sul, I had never been in an airplane and I had
t he chance t o t ake t his t rip wit h t he group. We do not grow by
st aying at hom e all t he t im e, I was st aying at hom e t oo m uch,
but at hom e, all we do is t ake care of t he house, here we feel
renewed.
Leisure, configured as an act ivit y t hat is aim ed at hav ing fun and ent er t ainm ent , w as highlight ed as an elem ent of gr eat im por t ance and r eper cussion in t heir lives, act ing as a powerful t herapeut ic resource.
For t hem , leisure is a way of seeking t he cure f o r t h e d i se a se b e ca u se , w h e n t h e y h a v e t h e se m om ent s of fun, t hey fill t heir m inds wit h pleasurable t h ou g h t s, m ov in g aw ay f r om p er sist en t ly n eg at iv e
t hought s about t he disease( 13). Regarding leisure it self, t he wom en revealed t hat : I com e here, I spend t he aft ernoon
here, we t alk a lot , it is very good, it m akes m e feel good. We walk,
we play, we have fun, we m eet a lot of people, it ’s always like t hat
in t he group. Here I don’t feel alone, I have a lot t o say and I also
like t o list en.
Th ey al so co n f i g u r e d i al o g u e am o n g each o t h er as a f o r m o f l ei su r e an d o f sp en d i n g t i m e,
r einfor cing t he idea t hat t he gr oup is per ceiv ed as a sp a ce f o r p l ea su r e an d m eet i n g s t h a t f a v o r t h ei r g en er al w el l - b ei n g . I n t h i s g r o u p ex p er i en ce, t h e physical space of t he suppor t gr oups t r ansfor m s int o
t he social locus, dest ined t o helping each of t hem t o d o act iv it ies. Th e ex p er ien ce in a g r ou p of p eop le w it h sim ilar p r ob lem s p r ov id es t h e op p or t u n it y t o dev elop a t her apeut ic v alue and new w ay s of coping
wit h t he disease( 13).
I t co u l d al so b e v er i f i ed t h at , am o n g t h e benefit s t hat com e from t he support group experience, t h er e ar e i m p r o v em en t s i n sel f - est eem an d b o d y
im age, r ecover ing t hem for life, for t he j oy of living. Su ch st im u li em er ged w h en t h ey obser v ed t h at lif e
does not end, it goes on, and when we find a group like t his,
w hich support s us, encourages our self- est eem , even t hough
m y self- est eem is not low, I ’ve always been an opt im ist . For m e,
being a part of a group like t his m akes m e live anot her life, I was
eager t o help som eone, encourage people, t here are m any people
who feel lonely.
The building of a societ y is done, init ially, by underst anding it s relat ions. Language, t he form ulat ion of con cept s an d t h e clear def in it ion of t h ou gh t ar e e l e m e n t s t h a t f a c i l i t a t e t h e c o m p r e h e n s i o n o f
i n f o r m a t i o n a n d c a u s e a c t i o n s o f c i t i z e n s h i p( 6 ). Therefore, t he language used by t he wom en as a t ool t o f a c i l i t a t e t h e i r i n t e r a c t i o n a n d r e l a t i o n s w a s r em ar k able, ch an gin g beh av ior s an d r eliev in g t h eir
su f f er in g , b ased on t h e ex p er ien ce w it h t h e ot h er wom en of t he group: we t alk and som et im es even describe
g r o u p , w e m eet p eo p l e w i t h t h e sam e p r o b l em , an d w e
com m unicat e wit h each ot her and st art t o accept it .
Th e g r o u p e x p e r i e n ce ca u se s a co n st a n t ch a n g e i n e a ch i n d i v i d u a l , w h i ch i s sh o w n t o b e dy nam ic and cont inuous t hr ough t he int er act ion w it h
t h e ot h er s( 10); h abit s, t h ou gh t s an d feelin gs ch an ge and becom e behaviors in a relat ionship of friendship, not one of dom inance. These changes were ident ified in a healt hy w ay : I w as st ay ing hom e t oo m uch, holding
m yself back, t aking care of t he house and everyt hing, and by
com ing over here, we get happier, it changes your life for t he
bet t er. I t ’s fant ast ic t o part icipat e in a group like t his!
Ex changing ex per iences in t his gr oup m ak es
w om en acquir e gr eat er sk ills for coping w it h cancer -r e l a t e d d i f f i cu l t i e s, e n co u -r a g i n g t h e m t o ch a n g e at t it udes and react ions, besides im proving knowledge of t he self.
FI NAL CONSI DERATI ONS
Th e r e s u l t s o f t h i s s t u d y a l l o w e d u s t o under st and t hat , for t hose w om en w ho par t icipat e in suppor t gr oups for m ast ect om y, such gr oups ar e of f u n d am en t al im p or t an ce in t h e socializat ion of t h e
part icipant s, since t hey m ake it possible for t he wom en t o e x c h a n g e e x p e r i e n c e s , o f f e r s o c i a l s u p p o r t , inform at ion and orient at ion about t he disease and it s
t r e a t m e n t s , d e v e l o p m e n t o f l e i s u r e a c t i v i t i e s ,
i m p r o v e m e n t o f s e l f - e s t e e m , s e l f - i m a g e a n d in t er per son al com m u n icat ion .
Th e p h y s i c a l s p a c e , o r g a n i z e d b y p r of ession als w h o ar e in t er est ed in h elp in g in t h e
process of recovery and rehabilit at ion of w om en w it h breast cancer, can be t ransform ed int o a social space full of possibilit ies for hum an t ransform at ions t hat lead t o t he well- being of t he group t hat is being helped.
The aut hors verified t hat it is fundam ent al t o im plant suppor t gr oups in m unicipal and st at e public healt h ser v ices in Cear á, sim ilar t o w hat happens in t he cit ies of Sobr al and Juazeir o do Nor t e. Added t o
t he incidence of t his t ype of cancer, t he wom en reveal sat isfact ion and t he need for cont inuit y wit h t he group, hav ing seen im pr ov em ent s in t heir healt h.
Mult ipr ofessional effor t s can be valuat ed and
recognized, wit h event s, cam paigns and m eet ings t hat call local and st at e aut horit ies’ at t ent ion t o t he sit uat ion. Su p p or t g r ou p s f or w om en w it h b r east can cer ar e v er y im p or t an t , b ecau se it is a w ay t o r ed u ce t h e
b ar r i er s f o r t h ese w o m en t o access r eco v er y an d r eh abilit at ion ser v ices.
Ot her st udies should be developed t o ident ify and v alidat e t he r esult s of t he changes in qualit y of
lif e, in t h e f av or able con dit ion s f or t h e r ecov er y of healt h and prevent ion of aggravat ions, along wit h t he
wom en who part icipat e in t his kind of support groups.
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