Sibling roles in the lives of older group home residents with intellectual disability : Working with staff to safeguard wellbeing

When parents die, siblings of older people with intellectual disability are likely to take responsibility for oversight of their wellbeing and negotiation with formal support services. This study explored the roles siblings played in the lives of older people with intellectual disability who live in group homes, and the relationships between residents’ siblings and group home staff. The siblings of 13 group home residents and the 17 supervisory staff associated with these services were interviewed, initially face-to-face and then intermittently by phone over a period of three years. Data were analysed using an inductive analytical approach. Siblings valued the relationship with their brother or sister with intellectual disability and played a significant role in safeguarding their wellbeing. Sibling–staff relationships fluctuated over time, sometimes becoming tense and difficult. Few protocols guided these relationships. A principle-based framework could facilitate negotiation between staff and siblings about expectations of communication and decision making.