Information sharing during diagnostic assessments: what is relevant for parents?

Area of Science:

• Pediatric Neurodevelopmental Assessment
• Family-Centered Care
• Qualitative Research Methods

Background:

• Family-centered care is crucial in interdisciplinary neurodevelopmental diagnostic assessment clinics.
• Understanding parent perceptions of diagnostic information is key to effective care.
• Existing approaches may not fully meet the complex needs of families.

Purpose of the Study:

• To explore parent perceptions of diagnostic information provided in a tertiary care neurodevelopmental assessment clinic.
• To identify how information provision aligns with family-centered care principles.
• To understand parents' experiences and needs throughout the diagnostic journey.

Main Methods:

• A descriptive qualitative study design was employed.
• Data collected via open-ended questionnaires from an interdisciplinary team and in-depth interviews with parents from 9 families.
• Interview transcripts were thematically coded.

Main Results:

• Parents acknowledged receiving comprehensive diagnostic information but reported unmet needs.
• Parents' perceptions of information relevance differed from professional expectations.
• Parents highlighted the importance of a strength-based approach and focus on parental competency for coping.

Conclusions:

• Professionals must recognize and address the individualized needs of parents in neurodevelopmental clinics.
• Tailoring information delivery and support enhances the family-centered care model.
• Integrating parental perspectives is essential for improving the diagnostic assessment experience.