Bitstory: A new methodology for caregiving to empower parents of autistic children by building a strong support network

Abstract

This report present Bitstory: a new methodology for caregiving to support parents of autistic children by building a strong support network. Bitstory was designed to be implemented in the caregiving processes of De Buitenwereld. De Buitenwereld is a Dutch healthcare institution which provides care to families of children with (suspicion of) a psychiatric condition, aged 0-18. In 2015 De Buitenwereld was forced to change their caregiving processes due to the healthcare transition for the youth that was made in that year. This transition had several transition goals which healthcare institutions, such as De Buitenwereld, had to meet. One of the transition goals was to develop solutions that would support families in using their own support network, so that they would be less dependent on institutions. A great part of the families that receive care at De Buitenwereld are families of a child with autism. For this project, a focus was set these clients: parents of children with autism, aged 4-12. These parents suffer from high levels of stress and would benefit greatly from a strong support network. In an extensive exploration phase, lots of analyses was done into technologies, trends, parents’ needs and the company’s needs. In an extensive user research with a group of five parents of autistic children one main insight was distilled. This was the insight that parents lacked understanding from their network (family members, professionals, neighbors, friends, etc.) which let to having difficulties trusting them and thus building strong relationships. This ultimately resulted in parents not having the strong support network they need. But in order to get understanding from their network, parents have to explain and share lots of information with these others which costs them a lot of time and energy while they lack time and suffer from high levels of stress. All these factors hinder creating an understanding. Thus the solution had to support the parents in enhancing understanding of others so that they can build a stronger support network. In a conceptualization phase in which ideas were generated and transformed into design proposals, one proposal was chosen and further detailed into the Bitstory methodology. Bitstory is a new methodology for caregiving to empower parents of a child with autism (4-12 years old) by using tools to effectively capture, describe and structure important personal information into a visual story which can be shared at anytime and anywhere with any other who is involved in caregiving to enhance their understanding, strengthen relationships and build a strong support network.