Participant IDa | Intellectual disabilityb | Condition typec | Child age (years) | Child Gender | Relationship to child | Parenting status |
|---|
COIN3 | Severe | Single gene disorder | 3 | Female | Father | Co-parent |
COIN4 | Moderate | Single gene disorder | 15 | Female | Mother | Co-parent |
COIN5 | Moderate | Descriptive disorder | 9 | Female | Mother | Co-parent |
COIN6 | Moderate | Single gene disorder | 13 | Male | Mother | Co-parent |
COIN7 | None | Multi-gene disorder | 3 | Female | Mother (adoptive) | Single parent |
COIN8 | Mild | Single gene disorder | 11 | Female | Father | Co-parent |
COIN9 | Severe | Descriptive disorder | 12 | Female | Father | Single parent |
COIN10 | Severe | Single gene disorder | 8 | Male | Mother | Co-parent |
COIN11 | Severe | Single gene disorder | 10 | Male | Mother | Co-parent |
COIN12 | Moderate | Other genetic disorder | 4 | Male | Mother | Co-parent |
COIN13 | Moderate | Single gene disorder | 13 | Male | Mother | Single parent |
- Conditions reported by parents included DDX3X-related neurodevelopmental disorder, DYNC1H1-related neurodevelopmental disorder, Coffin Siris syndrome, Sotos syndrome, Tatton-Brown-Rahman syndrome, PMM2-CDG, Leri-Weill dyschondrosteosis, Trisomy 9p and agenesis of corpus callosum
- aParticipant ID starts from COIN3 as ID was assigned when interviews were scheduled not after completion (see Fig. 1 for recruitment procedure). COIN1 and COIN2 did not attend their interviews
- bParent-reported level of disability. Each parent rated their perception of their child’s disability as none, mild, moderate or severe/profound
- cCondition type was assigned with assistance from a clinical geneticist (author KB) as either a single gene disorder (Single Nucleotide Variant [SNV]), multi-gene disorder (Copy number variant [CNV] or multiple CNV), other genetic disorder (mitochondrial or chromosomal, including sex chromosome aneuploidy), or descriptive disorder (included those that are phenotypic)
