Communicating for research: Using an individualized approach within total communication for interviewing people with intellectual disabilities

The present paper reports on an innovative approach inresearch to communicating with people with intellectual disabilities, stressing the importance of participative methodologies. A model for an individualized approach to communication in outcome and quality of life interviews with people with intellectual disabilities is outlined which was developed in collaboration with Somerset Total Communication and local speech therapists. The product is a flexible communication strategy for involving service users in interviews, using core, local and individual vocabularies. Using symbols, photographs and signing to supplement spoken English, and covering the domains of outcome measurement, it was found that greater inclusion and participation was facilitated than at Five Years On,and that informed consent to participation in research was more meaningfully ascertained. The paper describes the broad experience of developing an individualized approach to communication in research, describes the process employed and identifies the wider operational and practice lessons for research from this initiative.