+Module Four: Patient/Family Education and Self-ManagementAt the end of this module, the participant will be able to:

Describe three learning needs of patients and families pertaining to care of seizures

Identify self-management strategies to improve health management of epilepsy

+Spectrum of Epilepsy

Uncompromised

Mildly compromised

Moderately Compromised

Strongly compromised

Epilepsy

Neurological Status

Effects of Therapy

Comorbidities and Consequences

Diversity of Epilepsy Influencing Factors

+The Spectrum of Patient and Family Education

Educational needs vary across the spectrum of the epilepsies, particularly in relation to frequency and severity of both seizures and comorbid conditions.

Needs for people whose lives are uncompromised or only mildly compromised by seizures or comorbidities will focus on epilepsy specific information and self-management.

Needs for people with more difficult to control epilepsy and moderate to severe comorbidities requires more comprehensive education and both epilepsy-specific and chronic care self-management.

+Factors influencing Patient/Family Education Fears about seizures, of dying, of being different are common

Confusion and misbeliefs about epilepsy and seizures

Lack of awareness about treatment options, fear of side effects

Difficulty finding right level and type of care

Denial, anger, anxiety, depression, loss of control and independence

Social problems, stigma –major barriers to care and education

Health literacy, learning disabilities and other cognitive problems – limit educational opportunities

+What is Epilepsy Self-Management?

A process – involves learning information, building skills, accessing support

A set of behaviors -what people actually do to manage seizures and their consequences* Does not imply person treats themselves

without medical professionals People with epilepsy/families work as ‘co-

managers’ Implies ‘patient-centered care’ and outcomes

DiIorio, C, 1997.

+Self-management, Nursing and Epilepsy

By merging and using principles of self-management in care of people with epilepsy, regardless of settings, the nurse can - Look at the total person, beyond seizures and

side effects Address factors that promote or are barriers to

health behavior and self-management Educate/promote strategies to change health

behaviors Focus on patient/provider communication,

control and partnerships

+Components of Epilepsy Self-Management

Seizures

Treatment

Comorbid conditions and general health

Safety

Lifestyle Stress Triggers

Healthy lifestyles

Independent living skills

Partnership with providers

Epilepsy-Specific Chronic Care

Adapted from: Shafer PO, DiIorio C, 2004;IOM, 2012.

+Developing Self-Management Plans

Assess seizure history, functional status and psychosocial function, learning needs

Uncover hidden problems, identify risks and barriers.

Assess patient/family motivation and readiness for learning.

Assess patient and family self-efficacy.

+Outcomes of Self-Management

Enhance self-efficacy (self-confidence)

Ability to manage seizures, general health Seizures and side effects Comorbidities

Ability to manage how epilepsy affects the person’s daily life (i.e. mood, stigma, cognitive problems, education, jobs, relationships, transportation)

+Examples of Self management Practices

Recognize, identify, track or monitor

Assess risks, make decisions, develop plans

Communicate and work together with family, health care team and community supports

Remember, act and respond to situations

Seizures and other symptoms

Seizure first aid and safety

Lifestyle modifications to manage triggers

Treatments decisions and adherence

Behaviors to learn What to manage

+Examples of Self-Management Strategies for Seizures and Treatments

Identify high risk situations, triggers

Teach seizure first aid

Use seizure diaries for self-monitoring

Develop seizure action plans

Know names, doses

Manage schedules

Avoid lapses, missed doses

Prevent, recognize, treat side effects

Adjust AED dose, schedule

Afford treatments

Seizures Treatment

+Examples of Self-Management

Strategies for Safety and Lifestyle

Home, work and community safety evaluations

Identify needs for safety precautions, helmets, alerting devices

Driving restrictions

Safe parenting

Develop safety management plans

Assess impact of daily life on seizures and epilepsy on daily life

Develop plan for trigger management, i.e. Sleep counseling Stress management Exercise Sick days and other

medicines

Safety Lifestyle

+Patient and Family Education, Resources and Services

Epilepsy education by health care providers

Community-based epilepsy education

Support – individual and support groups

Referral and resources for comorbidities

Employment and educational support and resources

Independent living support

Respite services

+ Epilepsy 101 for Epilepsy Nurses

Modules addressing patient safety in epilepsy monitoring units available at www.emucaring.org.

Epilepsy 102 modules will provide more indepth epilepsy information and nursing care for patients treated in epilepsy monitoring units, epilepsy clinics and other practice settings.

Nurses whose practice involves caring for people with epilepsy frequently

+Summary

Nurses are often the ‘front line’ of health care providers, the people that patients may see first or most often. Regardless of the setting, nurses provide a role in the assessment, care and education of people with epilepsy and their families. A self-management perspective will facilitate patient-centered care which is crucial for successful management of epilepsy.