Table 2.

Key aspects of demographic profile of participants

Individuals interviewed (n)	Age range of children Years (n and gender)	Ethnicity of families (n)	Genetic condition affecting families (n families, adults, children)	Status of children in relation to genetic condition (n)
Parents (52) [34 women & 18 men] Children (33) [aged <18 years] Adult children (11) [aged 18+ years]	8–11 (5♀;4♂) 12–14 (3♀;7♂) 15–17 (7♀;7♂) 18+ (9♀;2♂)	African‐Caribbean or Black British (5) Asian or British Asian or Middle East origins (3) White and from the UK (25)	Cystic fibrosis (4, 7, 5) Duchenne muscular dystrophy (6, 10, 8) Familial adenomatous polyposis (6, 10, 11) Haemoglobinopathies (sickle cell or thalassaemia) (6, 7, 5) Huntington’s disease (7, 10, 8) Neurofibromatosis (4, 8, 7)	Affected or positively tested for genetic condition (20) At risk of being affected or carriers (11) Known carrier (1) Unaffected siblings (12)

The families represented a wide spectrum of religious beliefs and included: Atheism, Christianity, Church of England, Hindu, Humanist, Methodist, Muslim, None, Pentecostal, Roman Catholic and Sikh.

There was also widespread variation of parents in terms of age and educational background.