Information Sharing During Diagnostic Assessments: What Is Relevant for Parents?

ABSTRACT

This descriptive qualitative study facilitates the application of family-centered care within a tertiary care interdisciplinary neurodevelopmental diagnostic assessment clinic by furthering an understanding of parent perceptions of the relevance of diagnostic information provision. An interdisciplinary assessment team completed an open-ended questionnaire to describe parent information provision. Parents from 9 families completed in-depth parent interviews following clinic attendance to discuss perceptions of information received. Interviews were audiotaped, transcribed, and coded by related themes. Parents did not perceive the information in the way professionals expected. Parents acknowledged receipt of comprehensive information relevant to the diagnosis but indicated that not all their needs were met. During the interviews, parents described the assessment process, preassessment information, and “steps in their journey.” They noted that a strength-based approach and a focus on parental competency would support their coping efforts. Results underscore the need for professionals to be attentive to parents’ individualized needs.

KEYWORDS. :

• Developmental delay
• diagnostic assessment
• family-centered care
• information provision
• neurodevelopment

NOTICE OF CORRECTION

The Early Online version of this article published online ahead of print on 13 October 2010 contained errors on pages 3 and 4.

The following statement should have been included in the Method section on page 3: “As the information from professionals was obtained within a survey format, the Ethics Review Board concluded that a consent form was not required. By completing the survey professionals were giving implicit consent. Surveys were completed and returned anonymously.”

Also the following detail should have been included in the Procedure section on page 4: “A 4–8 week interval was selected to enable parents to remember the events of the diagnostic assessment but also provide adequate time for parents to give consideration to and follow recommendations provided by professionals.”

This has been corrected for the current version.