Educating yourself is an ongoing process often steered by personal preferences. When a child is diagnosed with a chronic disease, they are expected to learn about their condition. It is of great importance to educate yourself in order to achieve a sense of independence, self-reliance and control over your disease. Unfortunately, children face problems when it comes to understanding complicated medical language and the variety of content that is available.
Inspiration and Method
Diagnosed as a Crohn's Disease patient myself in 2012, I have experienced dealing with a diagnosed first hand, when living in The Netherlands. Though I am a patient, other people's stories are more important to listen to in order to create a solution that includes a variety of cultural backgrounds, perceptions and beliefs. During the twenty weeks of this master thesis, I have written several articles (article one + article two) on the website of ImproveCareNow and Mid-February an article I wrote was published in the magazine of the European Federation of Crohn's and Colitis Associations (page 31) as a way to share my story and find people who were willing to explain their ideas regarding their Crohn's related experiences. Interviews were held with professionals from 7 different hospitals, all across the world.
Pling is a digital application that uses a patient’s electronic health records and translates these into age appropriate health literacy. A personalised learning platform allows him/her to understand what they have been through, what to expect in the near future and how to act upon it in a more engaging way, rather than flyers, books and paediatric consultations. The goal was to create a solution for children, while they are in a stage of denial and anger, that gives them something positive to fall back onto, something they can relate to and is easier to understand, without any interference of their worried parents or paediatrician.