Protocol for Interviewers Washington Group on Disability Statistics

Protocol for Interviewers Washington Group on Disability Statistics 5 th Meeting Rio de Janeiro, September 2005 Dr Anne Good

Underlying Principles • Equality • Respect • Inclusion • Voice

Understanding Disability • Complex concept • Social model • Group experiencing exclusion and discrimination • Non homogenous

Ethical Issues: specific challenges • Informed consent • Privacy • Confidentiality • Avoidance of Harm • Well being

Meeting people with disabilities • Ordinary courtesy • Do not operate from assumptions/stereotypes • Treat adults as adults • Speak directly to people with disabilities (‘does he take sugar? ’ syndrome) • Be aware of individuality as well as commonality

Examples of specific impairment based groups • Hearing disabilities • Speech and Language disabilities • Intellectual disabilities • Mental Health disabilities

Hearing Disabilties Meeting People: • Establish preferred method of communication • Ensure appropriate supports are available Interviewing: • Face the person when speaking • Use visual cues • Speak directly to person when using interpretor

Speech and Language Disabilities Meeting • Establish preferred method of communication • Ensure necessary supports are available Interviewing • Allow ample time for person to articulate what they want to say • Do not finish sentences for the person • If you do not understand, say so, do not pretend

Intellectual Impairments Meeting the person • Inform yourself as to their specific condition • Allow time to ensure that person understands you Interviewing • Confirm informed consent carefully • Use straightforward language • Explain specialised terms clearly • Ask if the person would like to have someone with them

Mental Health Disabilities Meeting the person Be aware of your own assumptiuons and attitudes Remember that mental health difficulties are very prevalent Try to put person at their ease Interviewing Take account of side effects of medication and of general low energy Keep interview short Take breaks if necessary

The Protocols • • • Developed and used during NDA pilot 2003 -2004 Lead researcher on this aspect of project is disabled expert Being revised currently in preparation for full NDS NDA welcome comments/suggestions Part of suite of guidelines and can be read in conjunction with the others: – – – Ask Me guidelines on consultation exercises with people with disabilities Guildines on including people with disabilities in research Ethical guidelines for disability research Guidelines for researching with children with disabilities (available on www. nda. ie)