Personal Determinants of the Environmental Factors

To collect additional data on determinants of poor epilepsy self-management in their target population, we conducted surveys with PWE receiving care at two clinics in the Houston area (N = 238) (Begley et al., 2013). We wanted to examine variation in self-management across diverse patient populations and explore the association between personal psychosocial factors (knowledge, self-efficacy, depression, and stigma) with self-management. Self-efficacy, social support, depression, and perceived stigma were found to be significantly related to self-management regardless of demographics, seizure frequency, or socio-economic status. The findings suggested that the difficulties with self-management faced by many patients with epilepsy are similar regardless of a patient’s background or characteristics, and the focus of strategies to improve self-management may be similar across populations.

F

igure 1. PRECEDE Logic Model of the Problem for MINDSET

MINDSET is conceived as having broad application nationally. However, initial development was more modestly focused to have application to the patients and clinics previously described. The heterogeneity offered in the clinic type (HMO, community clinic, and teaching hospital) and the patient population (demographics and epilepsy type) provided an excellent test-bed for development.

Goals for MINDSET were to influence patient self-management behavior and to influence the patient-provider communication regarding self-management. Respective patient and provider goals for MINDSET included:

1. 
   Patients with epilepsy who use the MINDSET self-management decision-support system in the context of their usual clinic visit for three consecutive clinic visits over a nine-month period will report at least three fewer “at-risk” self-management behaviors (assessed by the epilepsy self-management scale) compared to patients who do not use MINDSET.
   
2. 
   Healthcare providers who use the MINDSET self-management decision-support system in the context of their usual clinic visit will focus discussion on at least three “at-risk” self-management behaviors (assessed by the epilepsy self-management scale) at every visit with every patient using MINDSET.
   

In this section we describe the identification of expected outcomes, performance objectives, and determinants for the behavior and environment, the development of matrices of change objectives, and the construction of a logic model of change for the program. This step enables the triangulation of data obtained in Step 1 (from theory, empirical findings, and participant involvement) to inform the logic model of change.

MINDSET was informed by theory and empirically based guidelines that included social cognitive theory and self-regulation models (Bandura, 1986; Clark, 2003; Ryan, Deci; 2000), and motivational enhancement therapy protocols (Velasquez, Gaddy-Maurer, Crouch, DiClemente, 2001). The 5-As model of behavior change (Glasgow, Bull, Piette, Steiner, 2004), quality-of-care criteria, and clinical guidelines for epilepsy (Fountain, Van Ness, Swain-Eng, Tonn, Bever, 2011; American Epilepsy Society, 2003; Pugh et al., 2007, 2011) provided contextual evidence for MINDSET’s scope, components, and relevance for placement of MINDSET within a clinical context (described in Step 3). Social Cognitive Theory (SCT) holds that behavior is determined by the interaction of personal, environmental, and behavioral influences (Bandura, 1986). Personal factors include cognitions that increase or decrease the likelihood of engaging in a particular behavior (e.g., personal values, beliefs, skills, outcome expectations, and perceived self-efficacy). Environmental factors include any aspect of the environment (social or physical) that supports or discourages a particular behavior (e.g., influential role models, social or normative support). Self-regulation is a potent SCT concept for organizing health education in the management of chronic health disorders (Clark, 1989; Clark, Zimmerman, 1990). It comprises three principle sub-functions: behavior self-monitoring, its determinants, and its effects; judgment of one's behavior in relation to personal standards and environmental circumstances; and affective self-reaction (Bandura, 1991). The term self-regulation refers to both the patient’s management of his/her own care and the transfer of self-management tasks to the patient by the HCP as appropriate. Self-regulation has the potential of improving the patient’s autonomy and increasing adherence to medical regimens, which can improve medical outcome. Self-regulation implies a greater role of the patient in first determining and then monitoring and modifying therapeutic regimens in chronic illness in collaboration with the HCP. Self-efficacy and outcome expectations have been described as determinants of epilepsy self-management behavior (Begley et al., 2010; DiIorio et al., 2004).

The expected behavioral outcomes for people with epilepsy (PWE) related to each domain were:

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  Take anti-seizure medication as prescribed by the physician (Medication management)
  
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  Prepare for, and respond to, seizure episodes (Seizure management)
  
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  Alter behaviors to avoid seizure onset and seizure-related injury (Lifestyle management)
  

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  Healthcare provider and/or nurse educator will support people with epilepsy to self-manage their condition
  

Performance objectives were described for each self-management outcome. Performance objectives for medication management that the person with epilepsy will take anti-seizure medication as prescribed by the physician were:

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  PO1. Person with epilepsy (PWE) makes commitment to be adherent to prescribed medication regimen
  
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  PO2. PWE takes medicine correctly and on time
  
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  PO3. PWE keeps medication readily accessible (at home and away from home)
  
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  PO4. PWE keeps routine clinic appointments
  

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  PO.1. PWE avoids known antecedents of seizure onset
  
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  PO.2. PWE recognizes early warning signs
  
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  PO.3. PWE communicates with family/HCP in an acute situation
  
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  PO.4. PWE initiates first aid activities—recognizing status epilepticus
  
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  PO.5. PWE contacts the HCP if having more seizures than usual
  

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  PO.1. PWE maintains “normal” sleep levels
  
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  PO.2. PWE reduces stress (emotional and physical)
  
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  PO.3. PWE avoids ingested triggers of alcohol, drugs, OTC medications, and caffeine
  
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  PO.4. PWE avoids environmental triggers (e.g., blinking lights)
  
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  PO.5. PWE maintains healthy diet, keeps hydrated, and avoids hypoglycaemia
  
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  PO.6. PWE controls allergies
  
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  PO.7. PWE takes safety precautions in sport, recreational, and domestic activities
  
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  PO.8. PWE develops a social support network
  
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  PO.9. PWE wears identification (e.g., MedicAlert bracelet)
  

The environmental focus for MINDSET was for the HCP to support self-management awareness raising and skills training. This included identification and review of self-management problems, and discussion with the patient to develop agreed-upon self-management behavioral goals. The HCP’s behaviors were structured in accordance with the 5 As model and included requesting the patient complete data input into MINDSET and review their epilepsy management profile (ASSESS); reviewing the patient’s epilepsy profile and discussing personally relevant, specific recommendations for behavior change (ADVISE); discussing and agreeing on treatment goals with the patient (AGREE); reviewing barriers to achieving goals and agreeing on strategies to overcome them, and providing the patient with an action plan (ASSIST); reviewing epilepsy self-management change at each visit by comparing MINDSET epilepsy profile with that of the previous visit, arranging referrals appropriate to existing comorbidities in the patient profile, and linking patients to appropriate community resources to provide the support needed (ARRANGE).

Information obtained from the needs assessment phase (Step 1) and Step 2 literature review informed the specification of determinants for the performance objectives. After reviewing findings from the empirical literature, social cognitive theory and self-regulation models, motivational enhancement therapy, and our own formative research, we identified knowledge, self-efficacy, perceived importance, and skills as important and changeable determinants of epilepsy self-management for people with epilepsy. Similarly, we identified knowledge, self-efficacy and skills, and outcome expectations as important and changeable determinants of the healthcare provider’s behavior.

Matrices were developed that cross-referenced behavioral performance objectives with determinants to produce change objectives. The resulting cells of each matrix contained change objectives that stated what needed to change about a specific determinant, e.g., knowledge, for the patient to achieve a specific performance objective. Change objectives were produced for each relevant cell of the matrix. Example cells from the matrix for adherence to the prescription plan for anti-seizure medication are provided in Table 1. Similarly, a matrix was developed to describe the behaviors to be engaged in by the HCP that incorporated the MINDSET action plan into the clinic encounter (Table 2).

A logic model provided an understanding of the types of functional components MINDSET would need to provide to impact both the patient’s self-management behaviors as well as the HCP-patient discussion of self-management in the clinic visit. The logical consistency is indicated in Figure 2.