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Childhood Epilepsy and Parental Health Literacy

This study shall identify  health literacy (HL) needs of parents of children with epilepsy and co-design and feasibility test an intervention to optimise HL and equity in the health care context for these families.

About the Project

About 80 % of children with epilepsy experience comorbidity which often entails long-term, interdisciplinary, and cross-sectional follow-up. The parents play a key role in the management of the child`s condition. They are for example expected to participate in their child`s health care, communicate with health care professionals, navigate the different parts of the health care system, and update their knowledge and skills.

Health literacy (HL) is: “The cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (WHO). Hence,  parents` HL; to understand and critically assess health information and achieve successful collaboration with health care providers, is crucial for optimal follow-up of the child`s health.

User-involvement:The study has a board of management that includes two parents in the target group and one service provider within primary health care. The board of management receives updates on the study progress at regularly basis and contributes in safeguarding the users’ interest through commenting on the study protocol and the study outcomes. 


This study aims to develop and feasibility test, a tailored HL intervention based on a co-design approach including parents with children with epilepsy, specialist health care services, municipal health care, and the university. The objective is to optimise health literacy and equity to access to health care for children with epilepsy.


This project consists of four sub-studies that will address the three phases of the Ophelia framework.;

Sub-study 1: A cross-sectional study exploring the parents' Health Literacy needs using the Health Literacy Questionnaire (HLQ)

Sub-study 2: Semi-structured interviews based on the parent's response  (group level) to the HLQ

Sub-study 3: Workshops and co-creation of the health literacy intervention 

Sub-study 4: Initial testing of the new HL intervention (feasibility)


Inclusion of participants is completed in study 1 and study 2; there are currently no published results from these studies.


The study is financed by the DAM foundation through the Norwegian Epilepsy Association.


Morten Lossius, professor 2, and Hilde Karterud, Ph.D., Special hospital for Epilepsy (SSE), Oslo University Hospital, Norway

Richard Osborne, Centre for Global Health and Equity, Swinburn University of Technology, Australia Link: Global Health and Equity | Research | Swinburne University | Melbourne

Sølvi Helseth, Prodekan, professor, Oslo Met, Norway

Noémi Becser Andersen, M.D., DMSc, leader of the Epilepsy-clinic, København University hospital, Danmark

Project start and finish

2020 – 2024




Tags: Epilepsy, health literacy
Published Feb. 23, 2021 10:52 AM - Last modified Feb. 23, 2021 11:53 AM