Experiences of College-Age Youths in Families With a Recessive Genetic Condition

Abstract

Growing up in a family with a recessive genetic condition can trigger questions about progeny effect. This study explored perceptions of family hardiness and information sharing by 18- to 21-year-olds about genetic risk. Semistructured interviews, the Family Hardiness Index (FHI), and a Family Information Sharing Analog Scale (FISAS) were used. Participants included 11 youths who had relatives with hemophilia and 4 with sickle cell anemia. Findings revealed seven themes: assimilating premature knowledge; caring for others, denying self; cautioning during development; experiencing continual sickness; feeling less than; magnifying transition experiences; and sustaining by faith. There was no significant correlation between total FHI and FISAS. However, there was a statistically significant difference in FISAS between genetic condition variance. Specifically, higher hardiness was found and information sharing correlated among college youths in families with hemophilia. Additional research can lead to nursing interventions to provide genetic information to youths in families for illness variance.

Parents’ Communication with Siblings of Children Affected by an Inherited Genetic Condition

“…Giving children information about a genetic condition and associated risk, at a level appropriate to their developmental maturity, is likely to be more beneficial to them than trying to protect them by withholding information from them (Tercyak et al 2002;Hern et al 2006;Metcalfe et al 2008). Communication within families about genetic conditions is not, however, uniform (Gaff et al 2007), and siblings are a group whose information needs may be overlooked (Gallo et al 2009).…”

The role of support groups in facilitating families in coping with a genetic condition and in discussion of genetic risk information

“…In families affected by inherited genetic conditions, parents also need to be able to explain genetic risk information and its implications for children 2 . Giving children information about a genetic condition and associated risk, at a level appropriate to their developmental maturity, is likely to be more beneficial to them than trying to protect them, by keeping information from them 3–5 . This has been shown to lead to young people making better informed decisions about genetic counselling and testing 6,7 and subsequent health behaviour 8 .…”

Exploring parental cystic fibrosis disclosure to well children

“…When communicating a specific topic or selecting not to talk about a topic, parents typically take into account the child's developmental maturity level and provide an age‐appropriate explanation (Forrest et al, 2003; Plumridge et al, 2011). This strategy of providing age‐appropriate information is more beneficial than trying to protect children by withholding certain topics (Hern et al, 2006; Tercyak et al, 2002). The data from this study support the idea that parents selectively begin conversations and provide age‐appropriate information about CF with their well children.…”