A sister's stories – Everyday Experiences with a Brother with Cerebral Palsy in Switzerland: A Narrative Study (SisStories)

Results:

Family and individual interviews were interpreted iteratively to develop two narrative emplotments: Will he ever play what I play? and How can I be your sister when I am not with you? These emplotments narrate how being the sister of a boy with cerebral palsy occurs within everyday occupations and show Emma’s developing understanding of her brother’s disability and her identity as a sister. Narrative emplotment was used as an analytical tool to examine how ‘doing siblinghood’ occurred. Findings provide insights into an unfolding sibling identity that was enacted and emplaced.

Future sibling support services should consider the value of shared occupations, such as play or travelling, and the challenges siblings face at the intersections of family and community life when experiencing childhood disability within the family.

As a result of the participatory product design process, a brochure was published: “Vanessa schwimmt nachts im Pool" [Vanessa Swims in the Pool at Night.] It is based on the research findings and contains four stories for children. The stories vividly illustrate everyday situations experienced by a sister. Comics and a short film (https://www.youtube.com/watch?v=69LjY61Vy_c) complement the engaging material, which was developed together with a family and a school class. Each story includes extended learning activities for use in middle-grade classrooms (ages 9–12) and supports teachers in addressing the topic with their students. The brochure is available free of charge online via the ZHAW digital collection: doi.org/10.21256/zhaw-2579.

Background

Sibling relationships are a common yet highly individual experience during childhood and beyond. The role of being a sibling is lived through everyday occupations shaping a broader narrative of childhood experiences.

Siblings of children with disabilities may face significant challenges, as their participation in personally meaningful occupations can be restricted. At the same time, their responsibilities can foster independence and self-confidence. Their identity may be profoundly shaped by these experiences, roles, and responsibilities. Narrative theory can help to better understand such complex experiences by focusing on everyday occupations and their meanings.

Aim

This study aims to understand the meaning-making proccesses within and through everyday occupations of a sister of a boy with cerebral palsy. Further, we aim for a participatory knowledge translation of the findings to make the complexities of a sibling's experiences accessible to a broader audience.

Method

Data were collected as part of a larger mixed methods study in Switzerland (www.parti-cp.ch – SNF project number: 320030_212587). A secondary analysis of interview data from one family – consisting of a boy with cerebral palsy, his mother, and his sister – was conducted using an interpretive narrative methodology ("narrative-in-action"). The participating family was involved in the feedback and dissemination process.

To communicate the findings to a broader children audience, a knowledge translation tool targetting children was produced in collaboration with family partners.

Keywords: Narrative, Siblings, Cerebral Palsy, Occupation, Everyday Life, Knowledge Translation, Family Involvement