Our Methods

Our 91 individual interviews with mothers and fathers were conducted at least one year following genetic testing, after a period of adjustment. Two-thirds of the parents featured in this resource received a genetic diagnosis for their child.

For more information about parental support needs and experiences, see this open access paper.

We used thematic analysis to code transcripts from 85 Five-Minute Speech Samples (recorded as part of the longer interview about parents’ experiences with genomic testing and receipt of results). Reflecting the diversity of experiences within families of children with complex needs, we have included varied examples of parents' thoughts and feelings from the interviews that received explicit consent for public sharing.