English – Sibling PIMD

This website originated in my research into the lives of people who have a sibling with profound intellectual and multiple disabilities (PIMD); ‘broer zus EMB‘ translates as ‘brother sister PIMD‘.

My older brother was a man with profound intellectual and multiple disabilities. He was born in 1962 and died in 2010. Although he lived in an institution from a young age (he was almost 8 at the time), he and our sister and I felt quite closely connected with each other. I wondered how other siblings would experience having a brother or sister with PIMD, how it affected their views on life, and I did not find that many who wrote about it.Rienk en Paulien in 2000

I decided on writing a qualitative research proposal in 2012 and started working on it in 2013. I focussed on interviewing Dutch adults with a sibling with PIMD about their experiences and their views on what is important in life. What does their sibling with PIMD mean to them, do they think he or she influenced their views on life as a human being?

I did have some wonderful interviews with people who have a sibling with profound disabilities – yet this research project turned out to have an unexpected dynamic of its own. Some conditions that would have enabled me to do carry out this research in the way I had planned, simply did not work out as I had hoped. Time will tell if and how this research will proceed in the future…

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