“Fly on the wall”: A mixed methods exploration of the perspectives of those who grew up with a sibling with additional needs

Abstract
The experiences of those who grow up with a sibling with additional needs is a largely unexplored area of research. Where research exists, it is often quantitative and based on parental report. Research participants are often siblings of those with autism, learning difficulties, and/or “disability”. Most research is not British and there is little research regarding school experiences.
This research aimed to answer three research questions:
1. How much do those who grew up with a sibling with additional needs perceive that their life was affected? This was measured via self-rating scales.
2. What do those who grew up with a sibling with additional needs tell us about their experiences?
3. How can schools better support these children and young people?
A mixed methods approach was taken, with a Phase 1 survey, followed by Phase 2 interviews. Surveys were completed by 44 participants, of whom five were interviewed. Quantitative data was analysed using descriptive statistics and qualitative data was analysed using reflexive thematic analysis. Survey respondents were over 18 with no upper limit. Those who were interviewed were aged 18-28.
Results demonstrate a heterogeneity of experiences with a mixture of enrichment and challenge. Participants talked about three main themes:
• The high and lows of their experiences: happy memories, the impact on their character and the challenges which they, their sibling, and their family experienced.
• What it was like to be a “Fly on the wall”, to observe the experiences of family members and the world of disability, whilst rarely shining the spotlight upon themselves.
• Being the eldest sister and “second mum”
Whilst participants did talk about school, this was usually in the context of witnessing their sibling’s struggles.
Key words: siblings, mixed methods, additional needs, eldest sister, school, interviews, surveys, disability