They never see how hard it is to be me: Siblings' observations of strangers, peers and family

Abstract

Siblings of children with disabilities are an important consideration for professionals working in family-centred contexts. Siblings of children with a disability often have unique experiences and insights that can assist understanding within family-centred interactions. In order to understand siblings' complex interactions with others in their lives, 676 contributions to a children's Internet sibling support site were analysed. Three themes arose from the inductive thematic analysis regarding siblings' interactions with strangers, peers, and their family. Identified subthemes (written from the perspective of the siblings) were as follows: Strangers stare and have negative attitudes towards my sibling with a disability; peers don't understand what it's like to be me, use certain words that upset me, say nasty things and tease me about my brother/sister; although my family loves me, they don't have a lot of time for me, our plans are often disrupted, and they give me a lot of responsibility. Within family-centred intervention it is recommended that health and education professionals, and parents assist siblings to build effective strategies for interacting with others others and learn from siblings' insights.

Keywords:

• Sibling
• disability
• context
• family-centred practice

Acknowledgments

This research was supported by the Centre for Research in Complex Systems (CRiCS) Social Complexity PhD Scholarship awarded to the first author and a Research Institute for Professional Practice, Learning and Education (RIPPLE) Fellowship awarded to the second author.