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.
References
Jan 1, 1979·Journal of Personality and Social Psychology·S C Kobasa
Mar 1, 1991·ANS. Advances in Nursing Science·J M Hall, P E Stevens
Apr 1, 1986·ANS. Advances in Nursing Science·M Sandelowski
Dec 1, 1981·Journal of Health and Social Behavior·S C KobasaS Courington
Dec 1, 1996·Journal of Medical Genetics·M Richards, M Ponder
Sep 2, 2000·Journal of Pediatric Nursing·J K Williams
Oct 29, 2000·Research in Nursing & Health·E K SvavarsdottirJ H Kane
Jan 11, 2000·Pediatrics·O JärvinenH Kääriäinen
Jun 5, 2001·Pediatrics·UNKNOWN Committee on Bioethics
Jan 10, 2002·American Journal of Medical Genetics·A E GuttmacherW R Uhlmann
Feb 7, 2002·Western Journal of Nursing Research·Theresa A BeeryJoanne Hall
Jul 9, 2002·Journal of Advanced Nursing·Young Ran Tak, Marilyn McCubbin
Aug 31, 2002·International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care·Shoshanna Sofaer
Dec 11, 2002·Kennedy Institute of Ethics Journal·Lainie Friedman Ross
Jan 31, 2003·American Journal of Human Genetics·Michael J BamshadLynn B Jorde
Apr 1, 2003·Nature Genetics·L B Slobodkin
Apr 16, 2003·Nature·Francis S CollinsUNKNOWN US National Human Genome Research Institute
Feb 10, 2004·Holistic Nursing Practice·Kathleen Tusaie, Janyce Dyer
Jul 12, 2005·Nursing Ethics·G Anderson
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