Creating a character driven story for patient education and treatment adherence

EDUCATION

Managing sickle cell disease in children is challenging, due to various factors such as cultural, societal, and parental concerns. These factors often hinder early treatment initiation, despite the well-documented long-term benefits. Medication adherence also poses a significant challenge once treatment has commenced.

Engaging educational resources

Having convened a multidisciplinary advisory group of paediatric haematologists, nurses, psychologists and patient advocates to discuss the issue, Onyx Health created a patient and parent education campaign led by Super Sickle, an animated superhero character.

To aid with medical adherence and understanding of the disease, a Super Sickle Activity Book and Adherence Chart were created for the child. More importantly, Super Sickle education materials were created for specialist nurses to share. This is because once the treatment is prescribed, the nurse has a crucial role to play in talking to and working with parents, to ensure that they are comfortable with the treatment, and adherence is met. All materials are hosted on a Super Sickle educational platform, made available to everyone involved in managing the disease.

Ensuring medical adherence with Super Sickle

The patient-intended materials, of which the character forms an integral part, have been well received since creation. Colourful in appearance, and with interactive content, the materials are engaging for paediatric patients to learn about the disease. This is enhanced by the inclusion of a character (Super Sickle), which provides a source of encouragement and support.

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