Meeting Parents' Health Literacy Needs—Designing and Feasibility Testing of a Three-Step Intervention in the Childhood Epilepsy Context

Aims

(1) To codesign a health literacy intervention within a specialist healthcare setting to help the parents of children with epilepsy access, comprehend, use and communicate information and (2) to assess the intervention's feasibility by exploring stakeholders' perspectives on its usefulness, ease of use of trial methods and contextual factors impacting its execution.

Design

A codesign participatory approach followed by a feasibility approach inspired by the OPtimising HEalth LIteracy and Access to Health Services (Ophelia) process for health literacy intervention development.

Methods

(1) The codesign approach included workshops with (a) multidisciplinary personnel (n = 9) and (b) parents (n = 12), along with (c) an interview with one regional epilepsy specialist nurse (n = 1). The participants discussed parents' health literacy needs on the basis of vignettes and brainstormed service improvements. A three-step intervention was subsequently designed. (2) The intervention's feasibility was assessed via interviews with six parents (n = 6), a focus group interview with study nurses, a short doctors survey and a log of time spent testing the intervention.

Results

(1) The parents of first-time admitted children to a specialist epilepsy hospital were targeted for the intervention. Nurse–parent consultations were central to the intervention, activating parents in codeveloping and executing a tailored education plan. (2) Feasibility: parents (n = 6) experienced consultations and education plans that were beneficial for enhancing their self-efficacy in managing the child's condition. The study nurses (n = 3) acknowledged positive outcomes in streamlining patient education but felt that their training on the intervention methods was insufficient. Both parents and nurses identified limited personnel resources as a significant barrier to executing the intervention.

Conclusion

The codesigned intervention engaged nurses and parents in HL development despite system barriers. The parents experience enhanced self-efficacy in managing their child's condition. However, needs refinements and further feasibility tests are needed before future implementation.

Reporting Method

The Consort Statement 2010 extension for reporting non-randomised pilot and feasibility studies was used to ensure the methodological quality of the study. A Consort Statement 2010 checklist is provided as an additional file.

Patient or Public Contribution

The collaboration of parents within the target group, the providers involved and the project's steering committee was crucial in codesigning and evaluating this three-step intervention. Parents and multidisciplinary providers actively contributed through workshops, interviews and in discussion meetings. The study nurses testing the intervention played a key role in defining the documentation process for the codeveloped education plan.

Implications for Professional Care

This three-step health literacy intervention can positively impact parents' self-efficacy in managing their child's condition. Enhancing nurses' communication skills is essential for improving parents' health literacy, making it crucial to allocate resources for such training. The intervention content and strategies to meet parents' health literacy needs require refinement, with more provider involvement to better adapt it to the context. Future studies should focus on further feasibility testing by considering a more flexible time frame.

Trial Registration

Open Science Framework: https://osf.io/fg9c7/