Sociocultural aspects of schistosomiasis mansoni
in an endemic area in M inas Gerais, Brazil
Asp e c to s só c io -c ulturais d a e sq uisto sso mo se
manso ni e m áre a e nd ê mic a d e Minas G e rais, Brasil
1 Dep artam en to d e En ferm a gem M a t ern o In fa n t il, Escola d e En ferm a gem , Un iv ersid a d e Fed era l d e M in a s Gera is. Av. Alfred o Ba len a 190, Belo Horiz on t e, M G 30130- 100, Bra sil. 2 Dep artam en to d e En ferm a gem Ap lica d a , Escola d e En ferm a gem , Un iv ersid a d e Fed era l d e M in a s Gera is. Av. Alfred o Ba len a 190, Belo Horiz on t e, M G 30130- 100, Bra sil. 3 Dep artm en t of Ep id em iology a n d Biost a t ist ics, Un iv ersit y of Ca liforn ia M ed ica l Cen t er. Sa n Fra n cisco, Ca liforn ia , 94143, U SA.
An d réa Ga z z in elli 1 M a ria Flá v ia Ga z z in elli 2 M a t ild e M ira n d a Ca d et e 1 Sa m u el Pen a Filh o 1 Ilcéia Rib eiro Sá 1 Helm u t Kloos 3
Abst ract A st u d y t o d et erm in e t h e sociocu lt u ra l fa ct ors in flu en cin g k n ow led ge, a t t it u d es, a n d p ra ct ices of in d iv id u a ls from a sm a ll com m u n it y t ow a rd Sch ist o so m a m a n so n iin fect ion w a s ca rried ou t in a n en d em ic a rea in t h e St a t e of M in a s Gera is, Bra z il. T h e st u d y u sed q u a lit a t iv e a p p roa ch es t o collect d a t a from sch ool- a ged ch ild ren a n d t ea ch ers. Sp ecific fin d in gs w ere t h a t t h e in d iv id u a ls in t erv iew ed w ere a w a re of t h e d isea se, b u t a lso h eld in a ccu ra t e p op u la r b eliefs a b ou t t ra n sm ission . M iscon cep t ion s coex ist ed w it h a ccu ra t e k n ow led ge b ot h in ch ild ren a n d t ea ch ers. Th e d isea se w a s n ot seen a s a m a jor h ea lt h p rob lem a n d d id n ot a ffect t h eir a ct iv it ies sin ce it d id n ot ca u se sev ere sym p t om s in m ost of t h e in d iv id u a ls. Alt h ou gh t h e m a jorit y of t h e p a rt icip a n t s rela t ed t ra n sm ission t o w a t er a n d la ck of sa n it a t ion , t h ey d id n ot t a k e a n y p rev en -t iv e m ea su res sin ce -t h eir su b sis-t en ce is h igh ly d ep en d en -t on irriga -t ion , fa rm in g, fish in g, a n d ot h er essen t ia l w ork t h a t is d irect ly rela t ed t o w a t er a ct iv it ies. Th e a u t h ors d iscu ss t h e d ev elop -m en t o f a h ea lt h ed u ca t i o n p ro gra -m b a sed o n t h e k n ow led ge a n d p ercep t i o n o f i n d i v i d u a ls a b o u t t h e d i sea se a n d i t s d et erm i n a n t s a s b ei n g i m p o r t a n t f o r t h e co n t ex t a n d b eh a v i o ra l ch an ge.
Key words Sch isto so m a m a n so n i;Sociocu lt u ra l Fa ct ors; Hea lt h Ed u ca t ion ; Kn ow led ge, At t i-t u d es an d Praci-t ice
Resumo Est e est u d o foi rea liz a d o em á rea en d êm ica d o Est a d o d e M in a s Gera is, Bra sil, com o ob jet iv o d e d et erm in a r os fa t ores sócio- cu lt u ra is q u e in flu en cia m o con h ecim en t o, a s a t it u d es e p rá t ica s d os in d iv íd u os d a com u n id a d e em rela çã o a esq u ist ossom ose m a n son i. Os resu lt a d os m ost raram qu e t an t o crian ças qu an t o p rofessores con h ecem a d oen ça e p ossu em con cep ções cor-ret a s e in corcor-ret a s sob re a t ra n sm issã o. A d oen ça n ã o é v ist a com o u m p rob lem a im p ort a n t e d e sa ú d e p ú b lica e n ã o a fet a a s a t iv id a d es p elo fa t o d e n ã o ca u sa r sin t om a s gra v es n a m a ior p a rt e d a p op u lação. Ap esar d a m aioria d os en t rev ist ad os relacion ar a t ran sm issão d a d oen ça à águ a e falt a d e san eam en t o básico, n ão u t iliz a n en h u m a m ed id a p reven t iv a p ara ev it ar a in fecção, t en -d o em v ist a q u e su a su b sist ên cia -d ep en -d e em gra n -d e p a rt e -d a a gricu lt u ra , p esca e ou t ra s a t iv i-d a i-d es rela cion a i-d a s à á gu a . N est e t ra b a lh o, os a u t ores i-d iscu t em o i-d esen v olv im en t o i-d e u m p ro-gra m a d e ed u ca çã o em sa ú d e b a sea d o n a p ercep çã o e co n h eci m en t o d o s i n d i v í d u o s so b re a d oen ça e seu s d et erm in an t es com o sen d o d e u t ilid ad e p ara a m od ificação n ão só d o seu com p or-t am en or-t o m as or-t am bém d o con or-t ex or-t o.
Introduction
In Bra zil, Sch ist osom a m a n son i in fectio n is sp rea d m a in ly th ro u gh o u t th e co a sta l a rea o f th e n orth east region as well as in th e n orth ern p ortion of th e State of Min as Gerais. Th is p ara-sitic in fectio n is a sign ifica n t p u b lic h ea lth p ro b lem with a p p roxim a tely 10 m illio n in d i-vid u als in fected or at risk of in fection in Brazil. Sch istosom iasis is a p arasitic d isease th at cau s-es gastroin ts-estin al m orb id ity an d , if n ot treat-ed , m ay h ave m ore seriou s con sequ en ces, su ch as severe h ep atom egaly, h ep atosp len om egaly, esop h ageal varices, b leed in g, an d d eath .
Tran sm ission can b e con trolled by d ifferen t strategies, in clu d in g d ru g treatm en t, sn ail con -tro l, sa fe wa ter su p p ly, sa n ita tio n , a n d h ea lth ed u cation . Alth ou gh th ese m eth od s h ave b een u sed in d ifferen t en d em ic a rea s, n o sin gle m eth od h a s b een com p letely sa tisfa ctory a n d som e, su ch as sn ail con trol, h ave p roven to b e d ifficu lt to im p lem en t an d in effective in sever-al en d em ic areas. Alth ou gh ch em oth erapy can redu ce m orbidity cau sed by th e in fection , rap id rein fection occu rs, m ain ly in ch ild ren , req u ir-in g rep eated treatm en t ir-in en d em ic areas. Th u s, m ed ica l in ter ven tio n a lo n e is in su fficien t to con trol th e d isease. Water su p p ly m an agem en t an d san itation can b e effective strategies to re-duce tran sm ission (Lim a e Costa et al., 1987), b u t th eir cost an d th e lack of p olitical will an d com -m u n ity -m otivation h as -m ad e th is ap p roach d if-ficu lt to im p lem en t n ot on ly in Brazil b u t in th e m ajority of the en dem ic areas worldwide (Kloos, 1995). “En a b lin g fa cto rs” d efin ed b y Green et al. (1980) as availab ility of tim e, m on ey, eq u ip m en t, skills, an d safe water su p p ly, am on g oth -ers, m u st also b e con sid ered in sch istosom iasis an d oth er p arasitic d isease con trol p rogram s (Rosen field , 1990). Health ed u cation rem ain s a h igh p riority in th e World Health Organ ization (WHO) con trol p rogram s. On e o f its a im s is to h elp p eop le u n d erstan d th at th eir own b eh av-ior, in clu d in g wa ter u se p ra ctices, in d iscrim i-n ate d efecatioi-n , ai-n d failu re to seek or com p ly with m edical treatm en t, are key factors in tran s-m ission of the disease.
Sch isto so m ia sis p reva len ce is h igh in th e State of Min as Gerais, ran gin g from 25% to 95% in d ifferen t region s. Stu d ies on th e im m u n e rsp on se of in fected in d ivid u als are cu rren tly b e-in g u n d ertaken e-in Boa Un ião, a sm all ru ral vil-lage located in th e n orth east of th e State. Th is village h as a p op u lation of ap p roxim ately 1,500 a n d a p reva len ce fo r S. m a n son iin fectio n o f 52% in 1994. In a recen t clin ica l su rvey in Boa Un iã o, 73% o f th e p o p u la tio n su b m itted to a m ed ica l eva lu a tio n a n d 20 in d ivid u a ls (1.9%)
were diagn osed as h avin g h ep atosp len om egaly, th e severe form of th e d isease (Corrêa-Oliveira, R. p erson al com m u n ication ).
In tegra ted stu d ies towa rd s th e d evelo p -m en t of a h ealth ed u cation p rogra-m are b ein g p lan n ed for sch istosom iasis in th e sam e village with th e ob jective of red u cin g exp osu re risk to S. m a n son ice rca ria e. It h a s b e co m e in cre a s-in gly recogn ized th at com m u n ity-b ased h ealth ca re p rogra m s m u st b e d esign ed , im p lem en t-ed , an d evalu att-ed with in th e cu ltu ral con text of stu d y com m u n ities. Man y p rob lem s in p rim a-r y h ea lth ca a-re p a-ro ga-ra m s a a-re d u e to th e la ck o f kn owled ge ab ou t local p ractices, lack of sen si-tivity to eco n o m ic a n d cu ltu ra l fa cto rs, a n d o th er elem en ts th a t req u ire in -d ep th kn owl-ed ge of loca l cu ltu ra l p ra ctices a n d ecologica l con strain ts (Ram akrish n a et al., 1990). Design in g h ea lth ed u ca tio n p ro gra m s req u ires co n -sid era tio n o f th e so cia l, cu ltu ra l, eco n o m ic, a n d p o lit ic a l fa c t o r s t h a t in flu e n c e h e a lt h b e h avior, th u s p rovid in g h ealth p lan n ers with th e kn owled ge n ecessa ry to d evelo p effective d isea se co n tro l p ro gra m s. Un d ersta n d in g th e n eed s, p riorities, an d p ercep tion s of th e com -m u n ity a n d a ssu rin g co n sisten cy o f p la n n in g p rogram s with th e p h ilosop h y of h ealth ed u ca tion is also of key im p ortan ce for th e d evelop -m en t o f p la n n in g p ro gra -m s th a t will n o t o n ly b e effica cio u s, b u t th a t will b e a ccep ted a n d su ccessfu lly im p lem en ted, op erated, an d m ain -tain ed (Hoch b au m , 1980; Basch et al., 1986). In Brazil, Noron h a et al. (1995) n oted d iscrep an -cies b etween cu ltu ra l va lu es a n d h a b its a n d con ven tion al con trol m easu res th at im p acted th e effectiven ess of h ealth edu cation p rogram s. Rozem berg (1994) related sn ail con trol an d oth-er p reven tive m easu res in th e n ation al sch isto-so m ia sis co n tro l p ro gra m to m isco n cep tio n s a b o u t th e ca u se a n d co n tro l o f sch isto so m ia sis. Th u s, th e ob jective of th is stu d y is to id en -tify kn owled ge, a ttitu d es, a n d p ra ctices (KAP) of teach ers an d stu d en ts su rrou n d in g sch isto-so m ia sis tra n sm issio n , p reven tio n , a n d trea t-m en t in ord er to p rovid e b aselin e in fort-m ation fo r h o u seh o ld -b a sed KAP a n d wa ter co n ta ct stu d ies a s well a s a su b seq u en t co m m u n ity h ea lth ed u ca tio n p ro gra m . Th e resu lts o f th e KAP stu d ies will b e rep orted elsewh ere.
M ethodology
in fectio n in o rd er to d evelo p a h ea lth ed u ca -tio n p ro gra m . Fo cu s gro u p d iscu ssio n s a llow sp on tan eou s d iscu ssion of id eas th at m ay n ev-er b e elicited so lely b y a n in tev-er viewev-er’s q u es-tio n s. Th is m eth o d is o f p a rticu la r va lu e with gro u p s o f ch ild ren . To u n d ersta n d b eh a vio r o n e n eed s to u n d ersta n d first th e va lu es a n d b eliefs related to th e p eop le’s p ractice an d atti-tu d es (Kru eger, 1994).
A to ta l o f 7 fo cu s gro u p d iscu ssio n s were h eld with 56 vo lu n teer ch ild ren a n d a d o les-cen ts ages 10 to 18 selected from differen t class-es in th e local sch ool. Each grou p h ad ap p roxi-m a tely 8 p a rticip a n ts. Th ree fo cu s gro u p d is-cu ssion s were also p erform ed with a total of 15 local p rim ary teach ers th at were in th e sch ool d u rin g th e tim e o f d a ta co llectio n . Two h a d b ach elor d egrees an d th e oth ers h ad com p let-ed seco n d a r y let-ed u ca tio n . Th e d iscu ssio n s revo lved a ro u n d kn owled ge o f ca u ses, p reven -tion , m od es of tran sm ission , trad i-tion al th era-p y, a n d a ttitu d es rela ted to sch isto so m ia sis. Th e fo cu s gro u p d iscu ssio n s were co n d u cted con cu rren tly with in -d ep th in terviews with key p eop le in th e com m u n ity su ch as h ealers, com -m u n ity lead ers, an d th e local p h ar-m acist. Written an d verb al con sen t was ob tain ed an d all in -ter views were ta p e-reco rd ed a n d tra n scrib ed verb atim . Du rin g focu s grou p d iscu ssion s, on e team m em ber, wh o acted as a m oderator, asked q u estion s an d facilitated th e d iscu ssion u sin g th e local vern acu lar lan gu age wh ile th e secon d record ed th e p articip an ts’ reaction s. Th is d u al m eth od of record in g resp on ses in creased d ata co n ten t va lid ity a n d relia b ility a n d a llowed co m p a riso n b etween a u d io reco rd in gs a n d h a n d written n o tes. Th e va lu e o f fo cu s gro u p d iscu ssion s in b eh avioral stu d ies of sch istoso-m ia sis h a s b een d escrib ed b y in vestiga to rs in oth er en d em ic areas (El-Katsh a & Watts, 1994). Th e d a ta co llected were co d ed a n d o rga -n ized i-n 5 categories: k-n owled ge ab ou t th e d is-ease, cau ses, sym p tom s, p reven tion , an d treat-m en t p ra ctices o f th e co treat-m treat-m u n ity. Th e co d es for each of th e ab ove categories were id en tified in d ep en d en tly b y th e resea rch ers a n d la ter com p ared . An swers th at were n ot related to th e sp ecific categories m en tion ed ab ove were n ot in clu d ed . Co n cep ts a risin g fro m o n e fo cu s gro u p in ter view were exp lo red with o th er gro u p s a n d ela b o ra tio n a n d cla rifica tio n wa s so u gh t fro m p rio r p a rticip a n ts. Th em es a n d categories were th ereby gen erated an d valid at-ed con cu rren tly with d ata collection an d an aly-sis (Ch en itz & Swan son , 1986).
Th e a n a lysis p rocess sta rted by cod in g th e ta p ed in ter view d a ta . Th ese co d es were th en exam in ed , com p ared , con cep tu alized in regard
to sch isto so m ia sis ep id em io lo gy a n d p reven -tion , an d later categorized . Th e b asic an alytical p rocess was accom p lish ed by m akin g com p ari-so n s fo r sim ila rities a n d d ifferen ces b etween ea ch in cid en t, even t, a n d o th er d a ta . Sim ila r even ts an d in cid en ts were lab eled an d grou p ed in to ca tego ries. Du rin g th e in itia l p h a se, d a ta were an alyzed in d etail, lin e by lin e, p aragrap h by p a ra gra p h . Th e co d es were id en tified fro m in ter views u sin g th e in fo r m a n ts’ own wo rd s a n d p h ra ses ca lled “in v iv o” co d es (Stra u ss & Corb in , 1990), as sh own in Tab le 1.
After th e in itia l co d in g, even ts a n d in ci-d en ts were th en grou p eci-d as th e categories p re-vio u sly selected a cco rd in g to th e o b jective o f th e stu d y, as sh own in Tab le 2.
Results
Socioeconomic background of the community
Knowledge of the disease
Sch istosom iasis is kn own by th e p eop le in Boa Un iã o a s “xisto sa” a n d wa s n o t p erceived a s a sign ifican t h ealth p rob lem , alth ou gh alm ost all p a rticip a n ts kn ew so m eo n e wh o h a d th e d isease. Wh en asked ab ou t th e m ain h ealth p rob -lem s in th eir fam ilies an d com m u n ity, p articip a n ts u su a lly referred to h ea rt d isea se, d ia b etes, h yp erten sio n , a n d n eu ro lo gica l p ro b -le m s. Pa rticip a n ts p e rce ive d sch isto so m ia sis a s a d isea se ca u sed b y a “v erm e” (wo rm ) b u t m a n y of th em d id n ot kn ow wh a t it looks like. So m e p a rticip a n ts d escrib ed th e p a ra site a s a sm a ll wh ite worm , oth ers b elieved it wa s lon g an d red , an d still oth ers b elieved th at it was in -visib le. Th ese “worm s” a re u su a lly seen in th e stream water or well water.
Cause of schistosomiasis
Th ere is clea r u n a n im ity with resp ect to th e p articip an ts’ b eliefs ab ou t th e cau se of th e d iea se. Th ey a sso cia ted sch isto so m ia sis tra n
s-m issio n with wa ter co n ta ct a ctivities su ch a s wa sh in g clo t h e s a n d u t e n sils, b a t h in g, p la y-in g, or swim m y-in g y-in a d irty an d con tam y-in ated stream . Fu rth erm ore, th ey also h ad som e in ac-cu ra te co n cep tio n s a b o u t it. It wa s sa id th a t tra n sm issio n o ccu rs wh en ea tin g u n wa sh ed fru its an d vegetab les, eatin g fish from a con ta-m in ated streata-m , kissin g or tou ch in g sota-m eon e wh o h as sch istosom iasis, eatin g raw p ork m eat, or walkin g with ou t sh oes in d irty p laces. A few ch ild ren th ou gh t th at m osq u itoes tran sm it th e d isease b ecau se th ey fly arou n d garb age, d irty a rea s, a n d co n ta m in a ted p la ces. All th ese b e -liefs were related in gen eral to im p u rities (lack of san itation / clean lin ess) an d to th e tran sm sion of oth er com m on in testin al p arasitic d is-eases, su ch as ascariasis, taen iasis, an d oth ers.
Symptoms
Th e p articip an ts related sch istosom iasis sym p -to m s -to ga stro in testin a l p ro b lem s su ch a s stom ach ach e, d iarrh ea, b lood y stools, an d an en larged b elly. Both ch ild ren an d teach ers also Tab le 2
Cate g o rie s.
Codes Categories
• is a white wo rm Kno wle d g e o f the Dise ase
• is a wo rm we have insid e o f us
• g e t “ xisto sa” whe n we wash c lo the s
• g e t “ xisto sa” whe n we wash ute nsils
• g e t “ xisto sa” if we d o n’ t wash afte r b e ing in the stre am Cause s o f the Dise ase
• g e t “ xisto sa” whe n we e at raw fish fro m a c o ntaminate d stre am
• g e t “ xisto sa” whe n we swim o r p lay in a c o ntaminate d stre am Tab le 1
Initial c o d ing .
Interview Initial coding
The “ xisto sa” is a white wo rm that g e ts insid e o f us. • is a white wo rm
We c an g e t it whe n we wash c lo the s and ute nsils • is a wo rm we have insid e o f us
in the stre am and whe n we g e t ho me we d o n’t wash • g e t “ xisto sa” whe n we wash c lo the s
o urse lve s. And that’s whe n the wo rm g e ts insid e o f us. • g e t “ xisto sa” whe n we wash ute nsils
• g e t “ xisto sa” if we d o n’ t wash afte r b e ing in the stre am
We c an g e t it also whe n we e at raw fish fro m a • g e t “ xisto sa” whe n we e at raw fish fro m a c o ntaminate d
c o ntaminate d stre am full o f wo rms and fe c e s fro m stre am
m en tio n ed in a d d itio n to ga stro in testin a l sym p tom s oth ers su ch as h ead ach e, d izzin ess, p a in a n d ed em a in th e legs, wea kn ess, fever, a n d wh ite sp o ts o n th e b o d y, m a in ly o n th e face. En largem en t an d ten d ern ess of th e sp leen wa s co m m o n ly m en tio n ed a s a sign o f severe d isease, b ased on th e kn owled ge p eop le h ad of h osp italized sch istosom iasis p atien ts, som e of wh om h ad d ied .
Treatment and health-seeking behavior
All p a rticip a n ts kn ew a b ou t b iom ed ica l trea tm en t fo r sch isto so tm ia sis a lth o u gh th ey co tm -p lain ed ab ou t th e sid e effects of th e d ru gs, es-p ecia lly d izzin ess. Th is is a es-p es-p a ren tly d u e to a co m b in a tio n o f th e p resen ce o f resea rch ers fro m In stitu to Ren é Ra ch o u -Fio cru z a n d th e p eriod ic ch em oth erapy th ey were givin g to th e p op u la tion a s p a rt of th eir im m u n ologica l re-sea rch p ro ject a n d th e a d vice given by h ea lth p erson n el to p atien ts in Itab irin h a d e Man ten a a n d in o th er town s with trea tm en t fa cilities. Patien ts u su ally go first to th e local p h arm acist wh o p rescrib es th e an tisch istosom al d ru gs af-ter sto o l exa m s. Th ey ten d to u se th e h ea lth services on ly wh en th ey h ave seriou s gastroin -testin a l p ro b lem s o r b lo o d y sto o ls b eca u se o f th e d ifficu lty of gettin g a m ed ical ap p oin tm en t at th e h ealth clin ic.
Bo a Un iã o h a s n o clin ic, b u t resid en ts u se th e h ea lth clin ic a n d d istr ict h o sp ita l in th e town of Itab irin h a d e Man ten a, ap p roxim ately 20 km a wa y. Peo p le in ter viewed co m p la in ed th a t n eith er th e clin ic n o r th e h o sp ita l h a ve m u ch to o ffer, esp ecia lly m ed icin es. Tra n s-p o rta tio n is a lso d ifficu lt. On ly o n e b u s go es d aily from Boa Un ião to Itab irin h a d e Man ten a a n d b y th e tim e p a tien ts get to th e h o sp ita l, th ey rep o rt, a ll a p p o in tm en ts h a ve a lrea d y b een d istrib u ted . Th ere is also a m ed ical lab o-ra to r y in th e h o sp ita l, eq u ip p ed fo r ch eckin g b lood , u rin e, a n d stool sa m p les. Pa tien ts wh o fail to see a d octor can eith er go to th e h osp ital to ob tain a m ed ical ap p oin tm en t for a typ ically u n afford ab le “p riority fee” or retu rn h om e. Al-th o u gh Al-th e h o sp ita l in Ita b irin h a d e Ma n ten a is a p u b lic fa cility, p a tien ts h a ve to p a y if th ey wan t to h ave a regu lar d octor’s ap p oin tm en t on an u rgen t b asis.
Mo st in d ivid u a ls b elieved th a t th e d isea se is cu ra b le with m o d ern m ed icin e a n d th a t it on ly reach es a lifeth reaten in g situ ation if p a -tien ts d o n o t trea t it in tim e. So m e o f th em kn ew p eop le with sch istosom iasis wh o h ad to u n d ergo sp len ectom y, oth ers th at h ad seriou s ga stro in testin a l p ro b lem s with b leed in g, a n d som e th at h ad d ied . Even th ou gh th ey all kn ew
th at sch istosom iasis is a d isease th at cou ld b e fatal if u n treated , th ey d id n ot assign m u ch sig-n ifica sig-n ce to it a sig-n d d id sig-n o t ta ke m ea su res to p reven t in fection . Som e p articip an ts said th at it is n o t a serio u s d isea se like AIDS o r ca n cer b ecau se it is cu rab le with ch em oth erapy, in d i-catin g p reviou s u se of ch em oth erapy by th e re-sp o n d en ts. Tra d itio n a l cu ra tive h erb a l tea s were kn own by som e, wh o said th at th ey u su al-ly u se th em co n cu rren tal-ly with b io m ed ica l trea tm en t. On ly few a d m itted th a t th ey go to local h ealers (“ben z ed eiras”) for treatm en t. In -terviews with h ealers estab lish ed th at th ey d o n o t h a ve a n y p ra yers o r sp ecia l rem ed ies fo r “xisto sa”. Th ey a d vise th eir p a tien ts to co n -su m e tea m a d e o f “Sa n ta Ma ria” (Ch en op od i-u m am brosoid es), a p lan t kn own for its b itter-n ess wh ich is th o u gh t to kill iitter-n testiitter-n a l wo rm s in gen era l. Wh en p a tien ts h a ve m o re serio u s p ro b lem s a n d h ea lers a re u n a b le to cu re th e d isease, th ey refer th em to th e h osp ital.
Prevention
Severa l o f th e p reven tive m ea su res d escrib ed by th e p articip an ts were sim ilar to cu rren t p u b -lic h ea lth reco m m en d a tio n s fo r p reven tin g sch isto so m ia sis. Th ese in clu d ed b u ild in g la trin es, h ea lth ed u ca tio n , a n d a vo id in g swim -m in g in strea -m s, rivers, a n d la kes th a t h a ve worm s an d sn ails or are con tam in ated by efflu -en ts from latrin es.
Oth er p reven tive m easu res m en tion ed th at focu s on avoid in g con tact activities or sou rces o f in fectio n reflect p o p u la r m isco n cep tio n s a b o u t th e tra n sm issio n o f sch isto so m ia sis. Most of th ese ap p aren tly origin ated from b io-m edical h ealth in forio-m ation abou t oth er in testi-n al p arasites atesti-n d d iarrh eal orgatesti-n ism s. Cookitesti-n g fish a n d p o rk b efo re ea tin g, keep in g p o ts a n d p an s in closed p laces, n ot th rowin g garb age in -to strea m s a n d rivers, a n d wa sh in g fru its a n d vegeta b les b efo re ea tin g were sa id to b e go o d wa ys to p reven t sch isto so m ia sis. Preven tive m easu res m en tion ed also reflected trad ition al b eliefs su ch a s th a t ch ild ren wh o d o n o t ta ke an y b iom ed ical treatm en t for an y p arasitic d is-ease u p to age 7 will n ever get in fected .
-ers em p h asized th at m ost p eop le are p oor an d wou ld b e u n ab le to con trib u te to an y m easu re. However, th is n o tio n o f h elp lessn ess is n o t b o rn o u t b y th e existen ce o f a co n sid era b le n u m b er o f h o m e-b u ilt la trin es, sh owers, a n d wells in Bo a Un iã o, even in p o o rer n eigh b o r-h ood s, an d in tr-h e even p oorer n earby village of Nova Un iã o. Th e o b ser ved d iscrep a n cy b e -tween teach er’s an d ch ild ren’s p ercep tion s an d a ctu a l p ra ctices a n d p o ten tia l fo r co m m u n ity p articip ation in water con tact b eh avior will b e rep orted sep arately.
Discussion
Th e m ain fin d in g of th is stu d y was th at th e p ar-ticip an ts were aware of sch istosom iasis d isease an d took several p reven tive m easu res, b u t th at th ey also h eld in accu rate p op u lar b eliefs ab ou t its m o d e o f in fectio n a n d p a th o lo gy. Misco n -cep tion s coexisted with accu rate kn owled ge in b oth ch ild ren an d teach ers with n o clear d iffer-en ces b etweiffer-en th e two gro u p s. Th eir kn owl-ed ge ab ou t sch istosom iasis was in flu en cowl-ed by b io m ed ica l resea rch ers fro m Fio cru z wo rkin g in th e a rea a n d p ro b a b ly a lso b y lo ca l h ea lth p ro fessio n a ls, a lth o u gh th eir rela tive im p a ct ca n n o t b e d iscern ed fro m o u r d a ta . Alth o u gh Fio cru z wo rkers were n o t in vo lved in fo rm a l ed u ca tio n a l p ro gra m s’ in fo rm a tio n a b o u t th e tran sm ission , cau se an d p reven tion strategies an d treatm en t were frequ en tly d iscu ssed in for-m ally with cu riou s stu d y for-m efor-m b ers.
Moreover, sch istosom iasis was n ot seen as a m a jo r h ea lth p ro b lem b y th e p eo p le o f Bo a Un iã o in sp ite o f th e h igh in fectio n ra tes a n d p resen ce o f th e severe fo rm o f th e d isea se. Sch istosom iasis alleged ly d oes n ot affect p eo -p le’s a ctivities sign ifica n tly sin ce it d o es n o t cau se severe sym p tom s in m ost of th e p op u la-tio n . On ly o n e ca se wa s rep o rted o f a tea ch er wh o h a d eso p h a gea l va rices a n d d ecid ed to st o p wo rkin g in t h e r ice fie ld s t o a vo id re in -fe ctio n . Alth o u gh m o st p a rticip a n ts a ttrib u te tran sm ission to water con tact an d lack of san i-tation , th ey d o n ot relate “xistosa” to th e p res-en ce of sn ails, u n like in th e n eigh b or in g State o f Esp írito Sa n to, wh ere th e d isea se is kn own as “d oen ça d o caram u jo” (sn ail d isease), favorin g th e association with sn ail vectors (Rozem b erg, 1994) a n d h a m p erin g p reven tive m ea su res. A m a jo r rea so n fo r th is d ifferen ce b e tween th e two stu d ies m ay b e th e n eed to con -tin u e a gricu ltu ra l wo rk, fish in g, a n d o th er es-sen tial water-related activities th at are th e b a-sis of su b a-sisten ce for th e p eop le of Boa Un ião. Th e va st m a jo rity o f th e p eo p le in Bo a Un ia o,
in clu d in g m ost wom en an d m an y ch ild ren , ap -p ea r to h a ve freq u en t a gricu ltu ra l co n ta cts with tra n sm issio n sites a t lo ca l strea m s. Th is fin d in g wa s co rro b o ra ted b y o u r KAP su r veys a n d b y o u r ep id em io lo gica l stu d ies in Nova Un ião, wh ere agricu ltu ral con tact was th e m ain va ria b le in th e d istrib u tio n o f in ten sity o f in -fection in ch ild ren an d fish in g an d agricu ltu ral con tact in ad u lts (Gazzin elli et al., 1997). Use of ru b b er b oots d u rin g field work (cu rren tly p rac-ticed b y ver y few in d ivid u a ls in Bo a Un iã o ) m a y red u ce b u t n o t sto p tra n sm issio n sin ce m o st p eo p le ten d to wa sh th em selves a t th e stream s on th eir way h om e after workin g in th e field s. Moreover, resu lts of th e KAP su rvey su g-gest th at b oots or th e con stru ction of latrin es, sh owers, o r wa sh b a sin s a s p reven tive m ea -su res are n ot afford ab le by m an y of th e h ou se-h old s, altse-h ou gse-h it ap p ears tse-h at tse-h e low p riority given to sch istosom iasis an d wid esp read sh ar-in g of well water with n eigh b ors an d relatives, a cop in g b eh avior also d ocu m en ted in n earb y Nova Un ião (Gazzin elli et al., 1998), con trib u tes to th is situ a tio n . Th e fa ct th a t so m e m em b ers o f h o u seh o ld s with sa fe well wa ter in Nova Un ião con tin u e to wash cloth es an d u ten sils in th e stream s, b ecau se it p rovid es p len ty of wa-ter fo r th ese a ctivities, elim in a tes th e n eed to d ra w wa ter fro m wells, a n d a lso p rovid es o p -p o rtu n ities fo r so cia l in tera ctio n with o th er wom en , su ggestin g th at a com bin ation of p h ys-ica l en viro n m en ta l fa cto rs, co n ven ien ce, a n d so cia l n eed s ca n b e m o re in stru m en ta l in d e -term in in g wa ter u se p a ttern s th a n sa fety fa c-tors (Gazzin elli et al., 1998).
Pa rticip a n ts, m a in ly th e tea ch ers, b la m ed th e m ayor for th e lack of p ip ed water an d san i-tation facilities in Boa Un ião. Village resid en ts are n ot u su ally organ ized to figh t for th eir righ ts an d d o n ot work as a grou p to p ressu re th e au -th orities to live u p to -th eir p rom ises to im p rove livin g con d ition s. Com m u n ity orga n iza tion is weak an d th e village was said to lack resp on si-b le com m u n ity lead ers. Discu ssion s with p ar-ticip a n ts in d ica ted th a t p eo p le ten d ed to re-m ain skep tical u n til th ey see con crete con trol efforts u n d ertaken by th e m ayor. Given th ese, th e p a rticip a n ts were co n fid en t th a t m o b iliz-in g th e p eop le for th e b etterm en t of th eir own lives wo u ld b e fea sib le. Orga n izin g th e co m -m u n ity, as well as -m axi-m izin g th e retu rn s fro-m sch istosom iasis con trol p rogram s will also re-qu ire com m u n ity p articip ation d u e to th e n eed fo r p eo p le to en ga ge in th e d ecisio n -m a kin g, im p lem en ta tio n , a n d eva lu a tio n p ro cesses (Kloos, 1995).
sch isto so m ia sis, wh ich is in co n tra st to th e Ph ilip p in es, wh ere th e d isea se is stigm a tized , as rep orted by Herrin (1988). Th is m ay b e d u e to th e p ercep tion th at sch istosom iasis is a rela-tively u n im p ortan t d isease th at d oes n ot u su al-ly ca u se a n y m a jo r p ro b lem s fo r p a tien ts o r th eir kin .
It sh o u ld b e n o ted th a t a lth o u gh th e co m -m u n ity h as h ealth facilities in close p roxi-m ity, p eop le p refer to go to th e p h arm acist for treat-m en t treat-m a in ly b eca u se o f p o o r a ccess to th e h ea lth clin ic in Ita b irin h a d e Ma n ten a . Mo st p articip an ts rep orted th at th ey get m ed ication fo r sch isto so m ia sis o n ly d u r in g th e b ia n n u a l ch em o th era p y p rovid ed b y th e Pro ject. Th e lack of m ed ication for th e p op u lation is also in flu en ced by th e p olitician s con trollin g th e su p -p ly of d ru gs, ch em oth era-py, an d th e availab ili-ty of h ealth services.
Th e fact th at in d ivid u als from th e com m u n ity d o n o t feel resp o n sib le fo r so m e p reven -tive action s related to sch istosom iasis m ay b e d u e to th e fact th at th is kin d of th in kin g occu rs in a co n text o f a La tin Am erica n co u n tr y th a t h as b een su b ject for d ecad es to an au th oritari-an govern m en t creatin g a p olitical cu ltu re th at is d istan t from th e d em ocratic id eas th at stim -u late p eop le’s p articip ation . It is d iffic-u lt to ex-p ect th at in d ivid u als can act in a way th at th eir action s will con trib u te to solve en viron m en tal p rob lem s (Sorren tin o, 1991). Th ey a re u su a lly n o t p rep a red o r m o tiva ted to p a rticip a te a n d a ct to so lve th eir own p ro b lem s, so it m a y b e con sid ered easier to tran sfer th e resp on sib ili-ty fo r th e se a ctio n s to o th e rs. We sh o u ld first d ea l with th e feelin g o f d isen ga gem en t, p ow-erlessn ess, in d ifferen ce, a n d a p a th y a n d th en stim u la te in d ivid u a ls to wo rk to geth er to cre-a te co n d itio n s fo r en viro n m en tcre-a l cre-a n d b eh cre-a v-ioral ch an ge.
Th erefo re, th e h ea lth ed u ca tio n p ro gra m p la n n ed in th is p ro ject b a sed o n a n en viro n -m en ta l a p p roa ch a n d socioecon m ic d ia gn o-sis p rom ises to resu lt in b eh avioral ch an ges of in d ivid u a ls, sin ce it p ro m o tes th e in terp reta -tion of th e reality of sch istosom iasis tran sm is-sio n in th e co m m u n ity, trea tm en t o f in fected p erson s, an d th e b u ild in g of valu e system s an d b eh a vio rs th a t en co u ra ge resp ect fo r a n d im -p rove m e n ts o f th e to ta l villa ge e n viro n m e n t Th e en viron m en tal h ealth ed u cation ap p roach a p p ea rs to b e a p p ro p ria te co n sid erin g th a t h ea lth in ter ven tio n s b a sed so lely o n reco m -m en d in g b etter a ccess to h ea lth ca re b y th e p op u lation or cou n selin g in dividu als abou t im -p rovem en ts in san itary an d water su -p -p ly h ave little im p a ct o n b eh a vio r (Klo o s, 1995). Th ese strategies overlook th e fact th at in d ivid u al san
-ita r y m ea su res ca n n o t b e a d o p ted wh en th e com m u n ity h as to live with in ad eq u ate h ealth services (Oliveira, 1996) or wh en th e way of life fa cilita tes sch istosom ia sis tra n sm ission , a s in Boa Un ião an d n eigh b orin g Nova Un ião village (Gazzin elli et al., 1997). Fu rth erm ore, th ey ten d to ign o re th a t b eh a vio r u su a lly reflects va lu es a n d b eliefs th a t ca n n o t b e ch a n ged with o u t ch an gin g th e cu ltu ral rep ertoire an d in form a-tive p o ten tia l o f th e co m m u n ity in rela tio n to its own d a y-to -d a y livin g scen a rio (Ferra ra , 1996; Valla, 1995).
On th is sp ecific p o in t, Oliveira (1996) re-p orts th at th e d iagn osis of th e b asic services in th e “fa v ela s” o f Rio d e Ja n eiro wa s o n ly m a d e p o ssib le b y o b ta in in g in fo rm a tio n fro m su b -jects d irectly in volved in th e su rvey. Th ese re-su lts in d ica te th e im p o rta n ce o f resea rch ers b ein g aware of th e n eed to in clu d e social actors in th eir stu d ies fo r im m ed ia te p ro b lem -so lvin g. Sim ila rly, Va lla (1995), lvin a stu d y lvin Leo -p old in a, Rio d e Jan eiro, fou n d th at h ealth an d en viro n m en ta l ed u ca tio n p ro gra m s fa iled to gen erate p ositive resu lts in term s of b eh avioral ch a n ge b eca u se th ey d id n ot in corp ora te p re-va ilin g so cia lly-a p p roved a n d tim e-tested strategies an d cu stom s of th e local p eop le wh o d ep en d o n th em fo r co p in g with d a y-to -d a y p rob lem s. However, it is im p ortan t to em p h a -size th a t Va lla (1995) ta u gh t th e co m m u n ity co n cep ts o f h ygien e a n d in d ivid u a l a n d en vi-ron m en tal h ealth in a scien tifically correct an d p recise way.
Variou s stu d ies em p h asize th at h ealth ed u -ca tio n p ro gra m s d esign ed to h elp p eo p le to avoid p assive an d au tom ated b eh avior related to h ea lth sh o u ld n o t b e co n fu sed with h ea lth in stru ctio n . Th e m a in d ifferen ce b etween in -stru ction an d ed u cation is th at in -stru ction s are in h eren tly ch aracterized by a stron g n orm ative a n d m o ra list co n ten t. Hea lth ed u ca tio n , in con trast, p rom otes critical th in kin g ab ou t real-ity, en ab lin g in d ivid u als to ju d ge an d select b e-h avior con d u cive to te-h e exercise of citizen se-h ip a n d th e d evelo p m en t o f th e ca p a city to select a ltern a tive h ea lth -p ro m o tin g b eh a vio r (Fer-rara, 1996; Kloos, 1995).
Conclusion
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Acknowledgments
We t h a n k t h e t e a ch e r s a n d st u d e n t s o f Bo a Un iã o for th eir coop eration , en th u siastic p articip ation , an d h o sp ita lity. Th is wo rk wa s su p p o rte d by Sm a ll Gran ts/ TDR/ UNDP/ World Ban k/ WHO, Pró-Reitoria d e Pe sq u isa d a Un ive rsid a d e Fe d e ra l d e Min a s Gerais-PRPq / UFMG, Fu n d ação d e Am p aro a Pesq u i-sa d e Min as Gerais – Fap em ig, Con selh o Nacion al d e De se n vo lvim e n to Cie n tífico e Te cn o ló gico -CNPq , Program a d e Ap oio a Gru p os d e Excelên cia-Pron ex/ CNPq / Fin e p, Na tio n a l In stitu te s o f He a lth -NIH / Gran t AI26505.
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