IDENTIFICATION OF FAM ILY VARIABLES IN PARENTS’
GROUPS OF CHILDREN WITH EPILEPSY
Paula Teixeira Fernandes
1, Elisabet e Abib Pedroso de Souza
2ABSTRACT - Objective: To verify t he effect iveness of t he support group in t he ident ificat ion of family variables linked t o epilepsy. Method: Pre-t est w ere applied t o parent s of 21 children w it h benign epilepsy of childhood recently diagnosed, from 5 to 15 years, w ho participated in the groups at HC/Unicamp. There w as a presentation of an educat ional video, discussion and applicat ion of t he post -t est 1. Aft er six mont hs, t he post -t est 2 w as applied. Results: The beliefs w ere: fear of sw allow ing t he t ongue during t he seizures (76.19%) and of a fut ure ment al disease (66.67%). Facing t he epilepsy, fear and sadness appeared. 76.19% of t he parent s present ed overprotection and 90.48%, expected a new seizure. In the post-test 1, the parents affirmed that the information offered had modified t he beliefs. In t he post -t est 2, 80.95% didn’t report great doubt s about epilepsy and 90.48% considered t heir relat ionship w it h t heir children bet t er. Conclusions: The demyst ificat ion of beliefs supplied from t he groups influenced t he family posit ively, prevent ed behavior alt erat ions and guarant eed effect ive care in t he at t endance t o t he child w it h epilepsy.
KEY WORDS: childhood epilepsy, family variables.
Identificação de variáveis familiares em grupos de pais de crianças com epilepsia
RESUM O - Objetivo: Verificar a eficácia do grupo na ident ificação de variáveis familiares ligadas a epilepsia. Método: Aplicou-se o pré-t est e em pais de 21 crianças, de 5 a 15 anos, com epilepsia benigna da infância de diagnóstico recente, que participaram dos grupos no HC/Unicamp. Seguiu-se apresentação do vídeo educativo, discussão e aplicação do pós-t est e 1. Após seis meses, foi aplicado o pós-t est e 2. Resultados: Apareceram crenças como: medo de engolir a língua durant e a crise (76.19%) e de apresent ar doença ment al no fut uro (66.67%). Frent e à epilepsia, apareceram sent iment os de medo e t rist eza. 76.19% dos pais apresent aram superprot eção e 90.48%, expect at iva de nova crise. No pós-t est e 1, os pais afirmaram que informações oferecidas modificaram as crenças. No pós-t est e 2, 80.95% não relat aram grandes dúvidas sobre epilepsia e 90.48% melhoraram a relação com seus filhos. Discussão: A desmist ificação de crenças e preconceit os nos grupos de pais, influenciou posit ivament e a família, prevenindo alt erações de comport ament os e garant iu cuidados efet ivos no at endiment o à criança com epilepsia.
PALAVRAS-CHAVE: epilepsia infant il, variáveis familiares.
Depart ament o de Neurologia da Faculdade de Ciências M édicas (FCM ) da Universidade Est adual de Campinas (UNICAM P) Campinas, SP, Brasil: 1Psicóloga, mest randa em Ciências biomédicas; 2Psicóloga, Professora Dout ora. Est e est udo recebeu auxílio da FAPESP.
Received 27 June 2001, received in final form 17 August 2001. Accept ed 27 August 2001.
Dra. Paula Teixeira Fernandes - Rua Ant onio Lapa 1125 - 13025-242 Campinas SP - Brasil. E-mail: paulat f b@t erra.com.br
Epilepsy is a common chronic neurological disease in childhood w it h high incidence of psycho-social difficult ies t hat affect t he social adjust ment and t he qualit y of child’s life and his family1. The diagnosis
of a chronic disease like epilepsy, generat es a series of feelings in t he parent s, t hat almost alw ays inclu-de: fear, anger, guilt , sadness, anxiet y, confusion, de-nial, concern, fear of t he epilepsy coming on accom-panied by personalit y disorders and fear of t he ef-fect s of medicat ions2. These feelings usually provoke
inappropriat e behavior in t he parent s, such as: over-prot ect ion, permissiveness, reject ion and low expec-t aexpec-t ion in relaexpec-t ion expec-t o expec-t heir children. The parenexpec-t s expec-t reaexpec-t t hem as sick, believing t hat any act ivit y can
precipi-t aprecipi-t e a seizure3. M any t imes, t he excess of care leads
t he parent s t o end up forget t ing about t he ot her members of t he family. From t hese react ions, t he children learn quickly t hat t here is somet hing w rong w it h t hem and consequent ly t hey begin t o present inadequat e behavior of dependence, insecurit y, irri-tability, immaturity. The parents, in this w ay, perpetu-at e t he st igma, influencing t heir children t o feel ap-prehensive and full of prejudice in relat ion t o epi-lepsy. In t his cont ext , t he family begins t o have less proximit y and more rest rict ions of behavior, act ivi-t ies and communicaivi-t ion3.
inap-propriate behavior to compensate for the lack of con-t rol con-t hey feel con-t ow ards con-t hem, w hich concon-t ribucon-t es con-t o t he problems of t he children’s adjust ment , besides generat ing family st ress, relat ed t o t ension in t he relat ionships among parent s and children, spouses and siblings, int erfering negat ively in t he qualit y of life. Several st udies confirm t hat t he family sit uat ion is one of t he most import ant predict ive fact ors of t he psycho-social problems in children w it h chronic diseases4,5. The behavior of parent s of children w it h
epilepsy depending on t he t ype of seizures, severit y of epilepsy, presence of ot her disorders, medicat ion effects and also on the psycho-social-cultural fact ors as beliefs, aspects related to the family and social dy-namics and t he child’s individual charact erist ics 6,7.
There are many myt hs and prejudices in relat ion t o epilepsy w hich brings about serious damages t o t he behavioral and psycho-social adjust ment of peo-ple8. The most common beliefs are: epilepsy causes
ment al disease; people w it h epilepsy w ill sw allow t he t ongue during t he seizure; t he seizure appears w hen somebody reprimands (says “ no” ) t he pat ient . M ost of t he feelings and t he parent s’ react ions are based above all on t he ignorance of t he disease and t he misunderst andings and fears of t he seizures, me-dicat ions, w hat t hey can and w hat t hey cannot do, st igma and discriminat ion9.
In t his cont ext , psychology appears w it h a w ider approach, considering t he individual as a w hole. It evaluat es t he impact of t he disease in t he person’s life and his/her family, t he qualit y of life, t he social, psychological and emot ional aspect s (behavior in different sit uat ions, int erpersonal relat ionships, aca-demic abilit ies, percept ions and feelings) and it pre-vent s or reduces t he risks of psychological complica-t ions inherencomplica-t complica-t o complica-t he diagnosis of epilepsy4,6,7.
Aust in and collaborat ors10 used an int ervent ion
program w it h parent groups t hat discusses t he child’s psycho-social difficult ies and his family. The group w ork provides an opport unit y for exchang-ing experiences and family exist ences, besides facili-t afacili-t ing facili-t he infacili-t eracfacili-t ion befacili-t w een parenfacili-t s and healfacili-t h professionals. It is t he aim of t his groups t o assist in t he know ledge of informat ion, of children’s react i-ons in t he seizures; in t he fears, anxiet y and t he par-ent s’ confusions regarding t he infant ile epilepsy. The group is an opport unit y t o share ideas, t o express t he fears and t o exchange experiences w it h ot her people living in similar sit uat ions. This group int er-vent ion possesses a st rong pot ent ial t o provide w ell-being, reducing t he parent s’ anxiet y, helping t hem see t heir children in a more posit ive w ay and help w it h t he child’s adjust ment and his family2,4.
The object ive of t his research is t o verify t he ef-fect iveness of t he parent groups, in ident ifying and clearing t he family variables linked t o t he parent s’ dynamics and children w it h epilepsy.
M ETHOD
Subject s
The members w ho part icipat ed in t his research w ere 16 mot hers and 10 fat hers of 21 children (12 boys and 9 girls) w it h benign epilepsy of childhood w hich have been recent ly diagnosed (less t han one and a half year), w it h ages bet w een 5 and 15 years. Out of t hese children, 57.14% had part ial seizures and 42.86%, generalized sei-zures. The parent s part icipat ed volunt arily in t he support groups at out pat ient s clinic of Neurology at HC/Unicamp.
Inst rument s
Invest igat ion prot ocols (quest ionnaires) w ere used in t his research w it h t he object ive of evaluat ing t he differ-ent aspects w hich affect the life of children w ith epilepsy, as w ell as the impact of the disease on the family dynamics, t hat is t o say, t he involved family variables. These prot o-cols w ere divided int o pre-t est and post -t est (Appendix).
Pre-Test :
- Child’s ident if icat ion: child’s personal dat a and his disease.
- Prot ocol of ident if icat ion of irrat ional belief s: it seeks t he ident if icat ion of ideas and prejudices linked t o epilepsy and t he child’s behavior. - Prot ocol of t he impact of t he disease in t he f amily:
it t ries t o ident ify feelings and react ions of t he epi-lepsy in t he family, t he most st ressing fact ors and t he m ost af f ect ed areas (social, f am ily, school, healt h, self-concept ).
- Protocol on the relationship of the child and family: it seeks the identification of the children’s and par-ents’ behavior and the child’s social relationship.
Post -t est s 1 and 2:
- Protocols of identification of the psychological and behavioral changes: it seeks t he ident ificat ion of alt erat ions in t he parent s regarding behavior, in-t eracin-t ive ain-t in-t iin-t udes and beliefs, in relain-t ion in-t o previ-ous informat ion regarding epilepsy.
Procedure
The parent groups w ere supervised by t he psycholo-gist responsible and t he sessions east ed for approximat ely one hour. First ly, t he pre-t est t ried t o evaluat e t he beliefs, t he impact of t he disease in t he family, t he parent s-chil-dren relat ionship and t he social and psychological aspect s. Lat er, t here w as t he present at ion of an educat ional video “ Guiding t he parent s”11, w hich brings informat ion
APPENDIX Pre-t est :
- Examples of quest ions of Prot ocol of ident ificat ion of irrat ional beliefs:
1. Is epilepsy a cont agious disease ?
( ) yes ( ) no _______________________________________ 4. Do you fear t hat your child might get any ment al disease? ( ) yes ( ) no _______________________________________ 11. Do you t hink your child can improve w it h energizat ion or blessings? ( ) yes ( ) no _______________________________________
- Examples of quest ions of Prot ocol of t he impact of t he disease in t he f amily:
1. Which w as t he most difficult phase? ( ) w hen your child had t he first seizure
( ) w hen you got t o know t hat your child had epilepsy ( ) during t he t reat ment
Comment s ________________________________________
2. What did you feel w hen your child had t he first seizure? Why did you feel t hat ?
( ) rage ( ) confusion ( ) fear ( ) depression
( ) sadness ( ) nervous ( ) disappoint ment ( ) anxious
( ) shame ( ) fright ( ) denial ( ) sorrow
( ) reject ion ( ) blame ( ) ot hers: ______________________________________ Why? __________________________________________
- Some examples of quest ions of Prot ocol on t he relat ionship of t he child and f amily:
2. Do you t hink your child’s behavior w as different before he began having seizures? ( ) yes ( ) no _______________________________________
5. What is your child’s relat ionship w it h his siblings like? ____________________ 11. Do you not ice any relat ionship bet w een your at t it ude and your child’s behavior?
( ) yes ( ) no _______________________________________ Post -t est s 1 and 2:
- Example of quest ion of Prot ocols of ident if icat ion of t he psychological and behavioral changes:
1. Did t his informat ion modify some beliefs you had about epilepsy?
( ) yes ( ) no Which?_______________________________________
school, beliefs and support groups. A discussion w as fol-low ed on epilepsy, t reat ment , social and psychological aspect s involved.
Right aft er, t here w as t he applicat ion of t he post -t est quest ionnaire 1 t o t he parent s, t hat had as object ive t o verify w het her t here w ere changes regarding at t it udes, behavior and beliefs in respect t o epilepsy and family re-lat ionship.
The post -t est 2 w as applied six mont hs lat er and aimed at evaluating the persistence of the changes that happened in t he family sit uat ion.
RESULTS
PRE-TEST
The beliefs t hat appeared most w ere: fear of t he
child sw allow ing t he t ongue during t he seizure (76.19%); fear of t he child present ing a fut ure
men-tal disease (66.67%); greater dependence of the child because of epilepsy (52.38%).
Regarding t he impact of t he disease in t he fam-ily: 52.38% of t he parent s t hink t he first seizure w as
t he most difficult phase. In t his sit uat ion, t he feel-ings t hat appeared most w ere: fear (85.71%), con-fusion (52.38%) and sadness (19.05%).
The emot ional react ions facing t he epilepsy di-agnosis w ere sadness (47.62%), confusion (33.33%) and fear / preoccupat ion (19.05%).
Parent s report ed t he expect at ion of t he seizure as being t he m ost st ressing f act or in t he disease (57.14%). In relat ion t o t his aspect , because of t heir concern (47.62%) t hey of f ered exaggerat ed care (47.62%).
t he relat ionship w it h t he family (52.38%); t he social act ivit ies (52.38%); t he child’s behavior (47.62%); t he relat ionship w it h friends (38.10%).
They believe t hat t he child’s disease had changed in t he family life: t he parent s’ relat ionship w it h t he w ork (66.67%); t he relat ionship among t he mem-bers (42.86%).
Regarding t he child and f amily relat ionship:
66.67% of t he parent s believed t hat t he child’s be-havior w as different before t he onset of seizures, being: 38.10% t hought t hat t his change may have occurred due t o t he disease (seizures) and 19.05% t hought t hat it happened due t o t he ant i-epilept ic medicat ion.
In t heir relat ionship w it h t he child, 76.19% con-stantly protect him; 38.10% w as afraid of reprimand-ing t heir child; 80.95% didn’t t ell ot her people about t he epilepsy and 90.48% lived in t he expect at ion of a new seizure. 95.24% of t he parent s had changed t he w ay of dealing w it h t he child aft er t he occur-rence of t he first seizure and t hey began t o offer great er care (66.67%) and t o have great er concern (80.95%). 38.10% of t he children had t heir seizures cont rolled ,w hich t ranquilized t he parent s.
POST-TEST 1
All t he parent s believed t hat t he offered infor-mat ion modified some beliefs t hat t hey had about epilepsy, especially relat ed t o t he fear of t he child sw allow ing t he t ongue and present ing some t ype of ment al disease.
Having cleared t he doubt s, t here w as a decrease in fear and st ress relat ed t o epilepsy. All of t hem got to notice the relationship betw een their behavior and t he child’s behavior, believing t hat it w as possible t o change t he w ay of looking at and behaving in rela-t ion rela-t o him.
As proposals of change for t he follow ing six mon-t h s, ap p eared : mon-t o d ecrease mon-t h e o verp ro mon-t ecmon-t io n (28.57%); t o t alk m ore (14.29%); t o b e calm er (14.29%).
POST-TEST 2
80.95% of t he parent s didn’t have great doubt s about epilepsy, t heir beliefs and t reat ment . It st ill appeared t he beliefs t hat t he child could sw allow t he t ongue during t he seizure (28.58%) and could present any fut ure t ype of ment al disease (21.44%). The discussion done six months before had helped 90.48% of t he parent s t o decrease anxiet y and st ress in relat ion t o t he disease. That improved t he rela-t ionship w irela-t h rela-t heir children, and afrela-t er rela-t he inrela-t erven-t ion, 85.71% of erven-t he parenerven-t s changed erven-t heir behavior
in relat ion t o t heir child: t here w ere more chat s and few er screams (23.81%), more pat ience (19.05%), more limit s and less overprot ect ion (14.29%).
DISCUSSION
It is know n t oday t hat epilepsy can be associat ed t o a great variet y of social and psychological diffi-cult ies, and t hese can be more harmful t han t he sei-zures12. The cultural perceptions of epilepsy are
nega-t ive and because of nega-t hanega-t , nega-t here is snega-t ill a lonega-t of snega-t igma relat ed t o t his condit ion. The result s of t his research show ed t hat t here w as a high frequency of alt ered behavior regarding t he relat ionship in families t hat had children w it h epilepsy. The presence of beliefs and t he ignorance of t he disease and it s t reat ment seem t o cont ribut e for t hese result s. Souza & Guer-reiro6 and Lot hman & Piant a13 relat ed t he doubt s as
usually t ranslat ed in insecurit y, fear and consequent overprot ect ion behavior and t he parent s’ permissive-ness in t heir relat ionship w it h t he children.
The presence of beliefs in t his st udy (90.48% of t he parent s) seems t o be relat ed t o t he ignorance about epilepsy and it s t reat ment , t hat had also gen-erat ed superst it ious behavior, overprot ect ion and concerned feelings, fear and insecurit y in t he par-ent s, hindering t he relat ionship of t hem w it h t heir children w it h epilepsy. One of t he beliefs t hat appea-red most t alked about t he fear t hat t he parent s pos-sessed of t he child sw allow ing t he t ongue (76.19%). In agreement w it h Ford and colaborat ors8 t hat idea
is quit e common and t he parent s usually place fin-gers, pens, rulers inside t he child’s mout h. Anot her belief reveals t he concern of epilepsy being accom-panied by disease or ment al ret ardat ion (66.67%), coinciding w it h dat a by Thom pson and Upt on3.
When t he parent s believe t hat t he children, because of t he epilepsy, are more dependent (52.38%), t hat seems to be a consequence of the previously reported beliefs.
The first seizure w as considered t he most diffi-cult st age by most of t he parent s. That happened because t his w as somet hing new and, most of t he t imes, unknow n, bringing conflict s int o t he family relat ionships and feelings of fear, confusion and sad-ness. These react ions are inevit able, t aking int o ac-count degree of anxiet y generat ed by t his experien-ce4. Consequent ly, a series of irrat ional fears appear
t o limit ing t he child’s life w hich are harmful t o t he good family relat ionships.
colaborat ors2 and Fejerman & Caraballo4. These
re-act ions prevent ed t hem from helping t heir children appropriately and from communicating. Epilepsy can affect t he pat ient ’s life and of his/her family in al-most all t he aspect s: school, social act ivit ies, behav-ior and relat ionship. All t hese have st rong influence on t he child’s adjust ment and his family10. M ost of
t he parent s t hought t he children w ere different be-fore t he seizures began: most of t hem w ere calmer w hile ot hers w ere more excit ed. They had also chan-ged t he w ay of behaving in relat ion t o t heir children and t hey placed rest rict ions w hich, according t o Carpay and colaborat ors14, could influence t he
deve-lopment of children w it h epilepsy unfavorably.
The overprot ect ion appeared in 76.19% of t he parent s and according t o Fejerman & Caraballo4, t his
is one of t he parent s’ most habit ual conduct s w it h t heir children w it h epilepsy. They believe t hat t heir child is more vulnerable and t hey t ake a series of measures t o prot ect him from frust rat ions, accident s and ot her t hings t hat can result in risk. Therefore, t hey avoid t hreat ening t he child w it h fear of t he sei-zure (38.10%). Unhappily, t his care immobilize t he child, making t hem more passive in his environment and int erfere in his psycho-social development .
M ost of t he parent s (90.48%) frequent ly expect new seizure, but 57.14% considered t his aspect as a st ress fact or. There w as a significant relat ionship bet -w een t he parent s’ peacefulness and cont rol of sei-zures. Fejerman & Caraballo4 demonst rat ed t hat t his
cont rol led t o a good psycho-social , physical and conduct a good prognost ic of children w it h epilepsy.
When t he parent s expose t heir doubt s and anxi-et ies t o t he professionals involved in t he t reat ment , t hey can be w ell inst ruct ed in how t o act in seizure sit uat ions. This can avoid st ress and family t ension and promot e bet t er adjust ment of t he child. It is as if t hey needed permissions and encouragement t o impose limit s and t o t reat t he children normaly8. In
t he group, t he parent s had t he possibilit y t o place t heir doubt s, f ears and consequent ly reduce t he st ress and prevent ion of behavior alt erat ions.
As w e get t o cont rol t he parent s’ anxiet y about t he child’s condit ion, w e observed a decrease in ex-cessive dependence, social inabilit y and family dist ur-bances. When one w orks w it h t he percept ions and t he parent s’ behavior, a posit ive influence is got t en in t he child’s psycho-social development . Though
t here is smaller rest rict ion of t he children’s act ivit ies and larger expect at ion in relat ion t o t hese children15.
The invest igat ion of t he degree of cont rol of be-havior and adjust ment t o t he disease in t he family is very import ant , because it allow s t he prevent ion of inadequat e behavior and, consequent ly, promot es an improvement in t he qualit y of life of children and t heir families. The demyst ificat ion of beliefs and pre-judices, t hrough a social support w it h correct and appropriat e informat ion about t he disease and it s t reat ment , supplied in t he parent s’ groups, influ-enced the family positively and also guaranteed more effect ive care in t he at t endance t o t he child w it h epilepsy promot ing bet t er adjust ment3,16-18.
Acknowledgment - We t hank Profª. Drª. M arilisa M . Guerreiro, responsible of Epilepsy Ambulat ory of Neurol-ogy Depart ment at HC/UNICAM P.
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