Parent health literacy and adherence to treatment in children with epilepsy

INTRODUCTION:  While epilepsy is one of the most common and disabling neurological disorders (6 to 7/1000), there are significant gaps in our knowledge about the relationship between parent health literacy and medication adherence in children. While parent health literacy and health outcomes in children with other chronic conditions have been explored, to date the literature if void of information pertaining to epilepsy or seizure disorders. Considering the incapacitating nature of this condition for many, the financial and emotional toll it takes on numerous families, and the stigmatized nature of this neurological disorder, it is possible that that parent health literacy and its association with adherence outcomes in children with epilepsy is different. An investigation of this relationship and what parents believe would be effective interventions are needed. The current study addresses these gaps. The purpose of this study was to investigate parent health literacy and its relationship with various aspects of epileptic care in children, including adherence to medication/treatment and follow-up on appointments and referrals. The study also obtained parent-recommended strategies for improving adherence.

METHODS: A cross-sectional, non-experimental design was used. Structured interviews with parents were conducted. Convenience sampling and targeted advertisement were used for recruitment. University researchers and a statewide epilepsy organization recruited 150 parents of children between 1-12 years old who were professionally diagnosed with epilepsy.  The structured interview guide consisted of a health literacy component and items that inquired about demographics, seizures, other health issues, medications, adherence to treatment, barriers to care, and recommendations for interventions and programs. SPSS was used to manage and analyze the data.

RESULTS: Parent health literacy was associated with two of the adherence outcomes. Results indicated significant barriers to effective management and treatment adherence among parents with inadequate health literacy. Parents provided insight into the emotional impact of the children’s condition on their own health and ability to manage their children’s care. Parent-generated suggestions for providing effective clinical care and public health education efforts to improve adherence were identified.

DISCUSSION:  Further attention is needed to the relationship between parent health literacy and adherence outcomes in children with chronic conditions. This need is especially important among parents of children with stigmatizing, disabling conditions such as epilepsy. Strategies for improvement should include input from the families and individuals affected.  This study has implications for further research and targeted parent interventions.