Experiences of college-age youths in families with a recessive genetic condition

Journal of Family Nursing
Marcia J HernDetrice G Barry

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.

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Citations

Apr 20, 2011·Journal of Genetic Counseling·Gillian PlumridgeParamjit Gill
Apr 24, 2008·European Journal of Human Genetics : EJHG·Alison MetcalfePeter Farndon
Feb 22, 2011·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Gillian PlumridgeParamjit Gill
Mar 21, 2013·Journal of Pediatric Hematology/oncology·Lanetta JordanThomas D Coates

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