Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks

Abstract

It is a hard task for professionals to give and parents to receive the bad news about a child's developmental disability. This study describes how findings about four preschool children, with difficulties suspected to lie within the autistic spectrum, were negotiated with parents by two multiprofessional groups, one in a Medical (Site M) and one in an Education setting (Site E). Each assessment was undertaken over half a day, the professionals jointly interacting with the child and family. All assessment discussions were audiotaped and each participant was interviewed after the assessment. Conversation analysis showed the activation of three major social-interaction frameworks: professionals at both sites applied a parent-friendly frame, but this was complemented by a hopeful-diagnostic-formulation frame at Site M, and a defocusing-of-bad-news frame at Site E.

The Teacch Approach to Autism Spectrum Disorders

“…Another line of recent research has looked at interpretive sessions from the perspective of sociolingustic analysis (Abrams & Goodman, 1998; Bartolo, 2002;Gill & Maynard, 1995). These studies have found that there are certain characteristic patterns ofinforming parents of assessment results.…”

Autism spectrum disorder: advances in diagnosis and evaluation

“…A mixed methods French study reported that satisfied families described professionals who made them feel respected, gave them time, and were open minded, direct, and sympathetic,197 whereas harmful practices included not checking to ensure that parents understood the explanation or to see if further time or discussion would be helpful. One qualitative study of how the diagnosis was communicated found that tensions between “realism” and “hopefulness” were negotiated by using a parent friendly frame, complemented by a hopeful formulation or by a defocusing of a “bad news” approach 198. The tension of how optimistic to be when communicating the diagnosis and prognosis was also highlighted in a qualitative study in which parents described feeling more positive than professionals about the prognosis; in turn the professionals described parents as being too optimistic 199.…”

Diagnostic practice and its impacts on parental health and child behaviour problems in autism spectrum disorders

“…The clarity of the diagnosis that is given,26 and the perceived quality of the information provided during the process,74 are also related to parental satisfaction with the diagnostic process. The nature of communication with professionals during diagnosis is also a predictor of parental satisfaction: the fewer professionals that parents need to see in order to obtain a diagnosis the greater their satisfaction;70 similarly, the perceived professionalism of the person giving the diagnosis is related strongly to satisfaction 27 72 75…”