Table 2. Demographic profile of participants.

Individuals interviewed	Family backgrounds	Age range of parents years (N and Gender)	Age range of children years (Gender)	Ethnicity	Educational background of parents	Genetic condition affecting families (N)	Status of children in relation to genetic condition
52 Parents =34 Women and 18 Men	Children living with parents in 29 families	30–34 (4♀0♂)	8–11 (5♀4♂)	5 Afro-Caribbean or Black British	21 left school at 16 years	Cystic Fibrosis (CF) (4)	21 affected or positively tested for genetic condition
33 Children (aged <18years)	In 21 of these, children lived with both parents	35–39 (6♀2♂)	12–14 (3♀7♂)	3 Asian or British Asian or Middle East origins	15 left school at 18 years following advanced-level qualifications or vocational course	Duchenne Muscular Dystrophy (DMD) (6)	11 were at risk of being affected or carriers
11 Adult children (aged 18+ years)	In five, children lived with single mother	40–44 (9♀9♂)	15–17 (7♀7♂)	25 White and from the United Kingdom	16 had University-level education	Familial Adenomatous Polyposis (FAP) (6)	12 were unaffected siblings
16 Parents interviewed as a couples	In three, children lived with mother and new partner	45–49 (8♀5♂)	18+ (9♀2♂)			Haemoglobinopathies (HbO) (6)
17 Women interviewed alone including 6 single mothers		50–54 (2♀1♂)				Huntington's Disease (HD) (7)
4 Men interviewed alone (2 separated fathers)		55–59 (3♀0♂)				Neurofibromatosis (NF) (4)
		65+ (4♀0♂)

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.

Note: The information in the rows bear no relation to each other, the findings are to be read in their columns only to give an indication of the different types of family that took part in the study.