Shifting perspectives

Abstract

This graduation project was in cooperation with Ontzorghuis, a Dutch charity that is focused on supporting the parents of children with special needs (CSN). It is crucial that CSN parents receive extra support, especially in the early stages when the child's diagnosis is still unclear. Parents of a CSN have extra responsibilities and care, which can easily overwhelm them and lead to burnout. In fact, 78% of CSN parents started working less after getting their child, and 60% ended up overworked and burned out (Okma, Naads, Vergeer & Berns, 2014) . Their extra care can also lead to an escalation: if the parents' well being is declined too much, the CSN has to be placed out of home. However, currently the Dutch care system is focused and structured around the child with special needs, not on the parents. Parents of special needs children are currently not seen as informal carers, giving them no right to extra support (Ross, 2020). This leaves the parents in a vulnerable position. The goal of this project is to use systemic design to develop a strategy for Ontzorghuis, to have a long-term impact on these parents.

After researching the context, several key actors in the system around CSN parents were identified: the national government, municipal councils, the care domain, charities and network. Ontzorghuis is part of the charity actor. For each of the actors, one or more interviews were conducted with someone working in this domain, 12 in total. The insights of the interviews were combined with those from literature research, to analyse the interactions between the actors. This forms the basis of the system map. The map consists of 25 points, representing the challenges actors have to face together. This system map was then used to investigate the possibilities for systemic impact for CSN parents. Leverage points were identified, and used to map out future interventions. The insights were converted into an actionable strategy for Ontzorghuis.

The first step of the strategy is to make CSN parents visible within society. The graduation design therefore had the goal of helping actors reflect on their role in the system around CSN parents. Storytelling was chosen as the mechanism to convey the system, as "storytelling allows for thorough understanding of complex systems with limited time investment and without requiring expertise on systems design" (Talgorn & Hendriks, 2021, p. 50). Using storytelling also allowed room for the empathy needed for this vulnerable but inspiring target group. The end result is a children's book for any actors of the system, using a metaphor to tell the story of a CSN parent interacting with the system, and inviting readers to reflect.