Other

Parental Narrative Coherence Following Rapid Genomic Testing in Childhood: Implications for Identifying Ongoing Support Needs

Dolling H, Mehrotra M, Hughes C · 4 Oct 2026

Abstract

Abstract Rapid genome sequencing in critically ill infants and children enables early genetic diagnosis, with potential for improving long-term family outcomes. However, the impact of these diagnoses on parent-child relationships and family dynamics are poorly understood. To investigate parental perceptions and affective meaning-making after a genomic result, this study applied Five-Minute Speech Samples (FMSS), a narrative method in which parents are invited to speak freely about their thoughts and feelings regarding their child and their relationship. These narratives were collected on average 3.5 years ( SD  = 1.0) after genomic testing and transcripts were rated for coherence – indexed by believable, clear, and succinct narratives, a marker of parent-child relationship quality. FMSS-Coherence was compared (1) among mothers ( n  = 53) of children with complex health conditions with and without a genomic diagnosis in the PEREGRIN study, using ANCOVA, and (2) between PEREGRIN parents and parents of gender- and aged-matched typically developing children in the NewFAMS study (total n  = 100, 50 mothers and 50 fathers), using a mixed-effects model. Narrative coherence did not differ significantly by genomic diagnosis status or by health condition / typical development. In both cohorts, nearly half of parents scored low in coherence (48% PEREGRIN, 46% NewFAMS), reflecting ongoing parental concerns and difficulty forming balanced narratives about their child and relationship, regardless of aetiology. These findings suggest psychosocial adjustment difficulties are common among parents of children with complex health needs, supporting early psychosocial assessment within genomic and paediatric care pathways.