Demystifying a Family-Based Epilepsy Adherence Problem-Solving Intervention: Exploring Adherence Barriers and Solutions

Abstract

Objective:

Barriers to medication adherence are common in pediatric epilepsy and associated with nonadherence, suboptimal seizure outcomes, and quality of life. A manualized, family-tailored education and problem-solving adherence intervention to address adherence barriers was tested in a randomized controlled trial in young children (2–12 years) with epilepsy. Study aims were to identify the adherence barriers and solutions chosen by families during intervention.

Method:

Participants with demonstrated suboptimal adherence were randomized to either education attention control or treatment. In this exploratory, secondary analysis, treatment group data were examined, including adherence barriers and solutions discussed during face-to-face problem-solving sessions and telephone follow-ups. Treatment data were independently coded utilizing codebook thematic analysis.

Results:

Twenty-seven children were randomized to treatment (M = 7.5 ± 2.9; 59.1% female). Across sessions, coding revealed 10 adherence barriers: Overall Forgetting (38–57%), Change of Routine (14–24%), Competing Activities (5–19%), Opposition (0–9%), Transition of Responsibility (0–5%), Running Out of Medication (0–10%), Forgetting During Travel (0–10%), Medication Not a Priority (0–5%), Medication Taste (0–5%), and Pill Swallowing (0–5%). Eight solution types were chosen and implemented by families: Environmental Cuing (29–50%), Multi-Pronged solutions (0–24%), Positive Reinforcement (14–23%), Backup Doses (0–14%), Refill Tracking (0–10%), Caregiver Modeling of Adherence Behavior (0–5%), Pill Swallowing Intervention (0–5%), and Other (0–5%). A ninth solution type, Caregiver Reminders, was often incorporated into Multi-Pronged solutions.

Conclusions:

Results highlight key adherence barriers identified by families of children with epilepsy and solutions implemented to address them. These data provide guidance to health care teams on how to successfully address adherence barriers in clinical settings.

Implications for Impact Statement

This study reduces gaps between research and practice by highlighting family-identified medication adherence barriers and solutions successfully implemented over time by families of young children with epilepsy.

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