Parents' perspectives on conversations about prognosis and an assessment of prognostic information available online: A mixed-methods study

Background: Conversations about prognosis for genetic neurodevelopmental conditions are becoming more frequent; however, there is a lack of evidence and guidance on how to approach these conversations and frame the information being provided.

Objective: (1) To understand how parents perceive prognostic conversations with healthcare professionals and their preferences for these conversations, (2) To investigate the framing of prognostic information found online.

Methods: This was a mixed-methods study, comprising of (1) a thematic analysis of interviews with parents and (2) a quantification of prognostic information available on the internet that portrayed a negative message. The strategy to classify the framing of prognostic information was defined iteratively, informed by the information found online.

Results: We interviewed 32 parents from across Australia. Parents had a child with a genetic neurodevelopmental condition, such as Fragile X syndrome (28 %), 22q11.2 deletion syndrome (16 %) or Angelman syndrome (16 %). Parents reported their preference to discuss their child's potential strengths as well as challenges regarding prognosis. They reported that conversations about prognosis often focused on the child's possible deficits and that online information they encountered was similarly framed negatively. Our analysis of online information confirmed parents accounts: 95.3 % was coded as negative, while only 4.7 % was positive/neutral.

Conclusions: Our data provide evidence of an over-emphasis of deficit-framed prognostic information about genetic neurodevelopmental conditions. The initial exposure to negative information may adversely affect parents' psychological well-being and expectations, which future research could address. Health professionals could consider strengths-based framing of prognostic information gained from current and emerging technologies when returning results to families. Findings from this study can help to inform health communication practices as well as online content development.