+ Module Four: Patient/Family Education and Self-Management At 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 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.