Epilepsy and Family Dynamics

Transcription

1 Epilepsy ad Family Dyamics BC Epilepsy Society November 15, 2010 Guests: Susa Murphy, Registered Nurse, Paret Rita Marchildo, Child Life Specialist, Paret Speakers: Audrey Ho PhD., R.Psych Josef Zaide PhD., R.Psych Epilepsy & Family Dyamics J. Zaide & A. Ho 2010

2 Family fuctioig before epilepsy Epilepsy Social-emotioal fuctioig of the child Family resposes to epilepsy

3 Which childre are most likely to have problems i social-emotioal adjustmet? (Epilepsy factors 1) Those childre who have: Epilepsy plus- uderlyig brai coditio due to ijury, disease, malformatio of brai, e.g. (symptomatic epilepsies) Adverse epilepsy sydromes- Leox-Gastaut, West sydrome, eg. Seizures: icompletely cotrolled; presece of EEG seizures Medicatio: more tha oe Co-existig coditios: cogitive or attetioal impairmets Age of oset: early

4 Which childre are least likely to meet with adjustmet difficulties? (Epilepsy factors 2) Those childre (the majority) who have: Epilepsy aloe: No evidece for brai abormality other tha seizures (idiopathic epilepsies) Epilepsy sydrome: No epilepsy sydrome or beig sydrome such as Beig Roladic Epilepsy of Childhood Seizures: Well cotrolled; fewer subcliical discharges Medicatio: sigle Co-existig coditios: Normal cogitio; o co-existig coditios Age of oset: later But

5 . because of the strog ifluece of psychosocial aspects of epilepsy, idividuals with mild epilepsies ca sometimes experiece greater difficulties i adjustmet tha those with more severe epilepsies. The social psychological cosequeces of epilepsy ca be more debilitatig for some tha the seizures themselves.

6 What are some psychosocial stresses that ca ifluece the idividual s fuctioig? Difficulties i acceptig ad adjustig to diagosis Negative emotioal resposes i idividual family members Straied relatioships betwee family members Extra psychosocial aspects uique to epilepsy

7 What are some psychosocial stressors uique to epilepsy? Negative perceptios ad attitudes of society towards epilepsy Seizures: - upredictability of occurrece - sese of loss of cotrol - worry about seizures because of dager - worry about seizures because of embarrassmet Tedecy to hide the coditio ad to withdraw socially

8 What are some emotioal reactios to the occurrece of epilepsy i the family? Fear, worry, axiety Shame, embarrassmet or guilt Ager, frustratio, resetmet Sadess, depressio, hopelessess

9 What are some family resposes whe a family member has epilepsy? Overprotectio, restrictio, over-ivolvemet with child Solve problems, do thigs for child Disciplie ad settig limits reduced or excessive Lowered expectatios or iappropriate expectatios Restrictio of family activities Movig away from people (isolatig)

10 Recapitulatio of recommedatios

11 Recommedatios Geeral attitudes Attitude of acceptace (recogizig that illess is part of life, e.g.) Perso ot defied by epilepsy it is oe compoet of may attributes of the perso Epilepsy is ot what society might lead you to thik Most people do well Reach out to others

12 Recommedatios At the begiig (ad later) Iformatio, iformatio, iformatio- Epilepsy educatio is a crucial part of treatmet As far as possible ivolve both parets at the begiig Psychosocial assessmet early i course of epilepsy ca help pipoit trouble areas Moitorig of psychological adjustmet by metal health professioals Reach out

13 Recommedatios Helpig with difficult emotios ad relatioships Educatio fid out the seizure risks, what to do Reach out to family, frieds, support groups, epilepsy societies- avoid what may be a tedecy to isolate If there is a more serious depressio or axiety, metal health access may be appropriate Work o developig a warm, urturig ad cohesive family eviromet where attitudes ad feeligs ca be opely discussed

14 Recommedatios Helpig with difficult emotios ad relatioships If there are marital difficulties, cousellig may be a optio Parets workig together ca reduce paretal frustratio Ope sharig of epilepsy diagosis ca facilitate exteded family support ad reduce isolatio

15 Recommedatios Ecouragig self-esteem ad idepedece Ivolve child i world outside home Normalize activities child is ivolved i Do t overprotect or restrict excessively, particularly i tees Give child ormal disciplie- be firm where eeded Notice what child does well emphasize abilities

16 Recommedatios Ecouragig self-esteem ad idepedece Realistic expectatios i the family for the child s role, ability-appropriate chores ad resposibilities Establish reasoable rules for the maagemet of certai behaviours Educatioal assessmet may help i establishig child s abilities ad realistic school expectatios, i obtaiig teacher support ad havig IEP Families who are able to deal with the child s epilepsy ad feel cofidet that they ca maage their child s problems, trasfer this cofidece to the child

17 Recommedatios Sibligs Treatig child & siblig with the same expectatios ad stadards elimiates double stadard Cosistecy i paretig gives structure ad predictability A built-i special time for the healthy siblig reduces focusig o the sick child ad ehaces siblig & paretchild relatios

18 Recommedatios Research cofirms that the comig together of people i trouble serves to icrease self esteem, decrease axiety ad depressio, ad raise levels of overall well beig (epilepsy otario).