Experiences of being diagnosed with an intellectual disability: A mixed methods service evaluation

Abstract

There is limited research into adults‘ experiences of being assessed and diagnosed with an intellectual disability (ID). We asked ten individuals referred to an adult learning disability health service for suspected ID, to complete a questionnaire within six months of diagnosis. Questions focused on the pre-, during- and post-assessment. It was common for clients to experience confusion about the diagnosis. The majority found the assessment acceptable, although most still had questions after their diagnosis. Results highlight the need for service flexibility and potential adaptations. Findings contribute to the dearth of evidence, provide directions for service development, and inform person-centred care.