P.Cambridge & Rachel Forrester-Jones
Journal of Intellectual & Developmental Disability
The importance of participative research methodologies is now widely acknowledged. A case study using individualised communication for interviewing people with intellectual disability in outcome and quality of life research is reported. The methodology and processes employed are described and lessons for the wider application of the model identified. In collaboration with Somerset Total Communication and local speech and language therapists, researchers from the Tizard Centre developed a flexible communication strategy for involving service users, drawing on core, local and individual vocabularies and using signs, graphic symbols and photographs to supplement spoken English. Individualised communication was used both to ascertain informed consent to participation in the research and to conduct the user interview. The initiative was part of a wider study looking at the outcomes and costs of community care 12 years on from de-institutionalisation. The approach was found to facilitate user participation compared with previous follow-ups, with wider lessons evident for user involvement.