Giving siblings a voice

Abstract

In special needs families, family dynamics are slightly different from the dynamics in other families. A child with special health care or educational needs requires a lot of attention and special care treatment from all family members. The parents‘ attention is mainly shifted to the care needs of the brother or sister and the siblings are mostly on their own (Okma, Naafs, Vergeer, & Berns, 2014). In Germany, 6.1 % of all children between 10 and 18 years old are officially caring for one of their family members. This means that in every school class at least 1 to 2 pupils are affected (Bühring, 2018).
Literature points to a wide range of positive as well as negative influences on the
emotional well-being of these siblings taking over care responsibilities at home, namely anxiety, depression, behavioral and social issues, but also strengths of character, such as empathy and kindness (Giallo et al., 2014, Martinez et. al, 2022, Milevsky & Singer, 2022).

This project focused on the personal experiences of siblings at a young age (6-12 years) growing up alongside a child with special needs. By conducting literature research, context mapping according to Sanders & Stappers (2012) with children, and
supplementary interviews with parents the following underlying core values of siblings have been identified: 1. Feeling understood, 2. The need for adult attention and feeling cared for, 3. Just being themselves. Briefly, growing up with a special needs sibling comes along with the challenge of truly feeling and acting like a child.
These insights resulted in the design vision and goal for Ontzorghuis, a Dutch organization offering workshops, retreats and reflective tools for special needs families: Designing for playful and engaging experiences to support siblings (age 6 -12) to assume their role as a child by empowering and facilitating the sibling through interpersonal connections. Through a research-through-design approach (Stappers & Giaccardi, 2017) the essential interactions of playfully sharing secrets in the form of affirmations and personal wishes with each other, were identified. The final design proposal resulted in the storytelling tool “Robin” to create a special bond between siblings and their parents. The playful tool enables children and their parents to create secret and surprising stories together that may involve personal needs or dreams of the child covered in the personality of Robin. The storylines are built upon research insights and the final story aims to serve as a conversation starter to understand the child’s perception and wellbeing of the current situation.
A limitation of this project is that within the scope of this master thesis the final design proposal could not be evaluated with siblings in order to try out the interactions, nor the intended context, the sibling’s home. Therefore, it is recommended to further evaluate the different parts of the design proposal in collaboration with siblings, their parents and sibling experts to prove the effectiveness in diverse contexts in order to create space to feel like a child.