Training program for caregivers

and PWE about epilepsy

Dr Fatma Kamoun Feki

Child Neurology Department- Hedi Chaker Sfax Hospital, Tunisia

Search unit UR12ES16, Faculty of medicine, Sfax University, Tunisia

Luxor, 2017

Epilepsys burden Epilepsy is a chronique and an unpredictible

disorder

That impact patients quality of life, and those who care about them:

Loss of control and independence

Low self-esteem

Depression, stigmatization

Social and employment restrictions

Financial strains Karakis I, 2014

Diagnosis of epilepsy,

It is associated with worries and fears

Both in patients and caregivers

Particularly in children,..

Adaptation to epilepsy is also problematic

Patients and caregivers report unmet needs

to information and support

For months to years after the diagnosis

Shore CP, 2008

Committee on the Public Health Dimensions of the Epilepsies

Committee on the Public Health Dimensions of the Epilepsies

Where, when and how PWE receives information ?

Consultation

times are brief

12 minutes

From Gilliam ; 2009

Caregives burden

Caregivers burden in

epilepsy has attracted

less attention than in less

prevalent neurological

disease

Most studies have

focused on pediatric

population

Karakis I, 2014

Educational project in epilepsy

Integral part of epilepsy research and services delivery.

For successful educational outcome: To carefully match educational tools and

methods to the needs and objectives of the intended

recipients

Educational objectives constantly reevaluated and updated Because of the changing knowledge base and

environment of patients,

Teachable moment is important Pedley TA, 1995

Seizures and Epilepsy Education (SEE)

SEE: Formal educational programs for adults

with epilepsy, parents and family members

Part I: medical aspect of epilepsy

Part II: Emotional and social aspects of epilepsy

Original SEE was developed during the 1980s

Children with epilepsy and their parents

became the audience in the 1990s

Shore CP, 2008

Seizures and Epilepsy Education

Materials:

Videotapes, PowerPoint presentations

Role-playing, Case histories of people coping

with epilepsy

2-day program

Participants completed instruments at 3 times

Prior to SEE, 1 month and 6 months after

attending the 2-day program

Shore CP, 2008

Quality of life

Shore CP, 2008

Seizure conditions management

Health care utilization

Limits:

Instructed PWE

English speakers

Internet resources

MOSES, FAMOSES

MOSES: Modular Service Package Epilepsy

FAMOSES: Modular Service Package Epilepsy For Families

German-speaking countries

Aims:

Support PWE to become experts in managing their disease

Trying to change attitudes and behavior

rather than solely imparting theoretical knowledge

May TH, 2002 Pfafflin M, 2012

MOSES, FAMOSES

MOSES: 9 modules:

Living with epilepsy, epidemiology, Basic

knowledge, diagnosis, therapy, self-control,

prognosis, psychosocial aspects and network

epilepsy

FAMOSES: 2 differents educational programs

For parents or caretakers

For kids aging 7-13 years: 7 modules

May TH, 2002 Pfafflin M, 2012

FAMOSES for kids

Interactive small

groups

Program based on a

fictional history in a

virtuel cruise

Sailing from island to

island

7 islands = 7 modules

Pfafflin M, 2012

May TH, 2002

Pfafflin M, 2012

FLIP and FLAP

Jantzen S, 2009

The aims Conveying epilepsy knowledge

Teaching epilepsy coping strategies

Encouraging child autonomy

2 day-program Impovement in:

Children and parent: Knowledge of epilepsy Parent: self management, communication skills

Children, adolescent: HRQOL Jantzen S, 2009

Developing world !

The developing world is an important and

special challenge for epilepsy education efforts

Publishers need to be more imaginative to

allow information transfer occurring widely and

cheaply

Information is shared more effectively through

specific projects

Pedley TA, 1995

Tunisia Child neurology department- Sfax Hospital Multidisciplinary team Video, ppt presentation, flyers, discussion, 70% of parents reported being insufficiently

informed about epilepsy 90% (prognosis); 70% (school); 60 (leisure)

>90% of parents reported needs to education

Morroco Ttouan hospital

Non published data

Epilepsy beliefs and attitudes

KABES: Kilifi Epilepsy Beliefs and Attitudes

Scales

34 items: causes of epilepsy, biomedical

treatment, culturel treatment, risks and safety,

negative attitude

to capture beliefs and attitudes about epilepsy in

ressource poor countries

Mbuba CK, 2012

1 day- education program for patient and caregivers Role-plays, picture materials, group discussions,

songs

1 day-workshop for traditional healers Sensitization of medical providers Positive effect in adherence to AED (not significant) Positive change in beliefs about risks of

epilepsy Ibinda F, 2014

Conclusion

Training programs

Effective component to comprehensive care in:

Impoving knowledge

Active coping with epilepsy

Brief and inexpensive

Should become a standard service in specialized

epilepsy care

Should make them attractive to health economists

Thank you for your attention

Sfax Hotel

Training program for caregivers and PWE about epilepsy Epilepsys burdenDiagnosis of epilepsy,Slide Number 4Slide Number 5Where, when and how PWE receives information ?Caregives burdenEducational project in epilepsySeizures and Epilepsy Education (SEE)Seizures and Epilepsy EducationSlide Number 11 Slide Number 13Internet resources MOSES, FAMOSESMOSES, FAMOSESFAMOSES for kidsSlide Number 18FLIP and FLAPSlide Number 20Developing world ! Slide Number 22Epilepsy beliefs and attitudesSlide Number 24Slide Number 25Conclusion Thank you for your attention