University of Limerick Institutional Repository

Knowledge is wealth: investigating psychosocial distress and ameliorating knowledge deficiencies in parents of children identified, through newborn screening in Ireland, as carrying an altered cystic fibrosis gene

DSpace Repository

Show simple item record

dc.contributor.advisor Ryan, Patrick
dc.contributor.author Quigley, Stephen James
dc.date.accessioned 2015-02-23T17:42:10Z
dc.date.available 2015-02-23T17:42:10Z
dc.date.issued 2014
dc.identifier.uri http://hdl.handle.net/10344/4318
dc.description peer-reviewed en_US
dc.description.abstract Cystic Fibrosis is an inherited disease affecting mainly the lungs and digestive system. In Ireland, the incidence of cystic fibrosis is 1 in 1,461 births, with 1 in 19 Irish people carrying an altered cystic fibrosis gene. Newborn screening for CF was introduced in the Republic of Ireland in July 2011. A consequence of the screening process is the identification of infants who carry an altered CF gene. Significant gaps have been identified in parental understanding of CF newborn screening and the consequences of carrying an altered CF gene. Filling in these gaps in knowledge is our primary means of alleviating the psychological complications which may arise from CF carrier identification. The current intervention study provided parents with a carefully designed information pack, and established how this affected their level of stress, knowledge of CF, as well as their decision to undergo genetic testing. A total of 32 parents took part in telephone interviews. Parents who received an information pack had significantly higher CF knowledge scores than parents in the control group. 44% of parents in the control group misunderstood the health implications of carrying an altered CF gene. There was no significant difference in Parenting Stress Index scores between the groups. Parents of infants who had more than one sweat test due to insufficient sweat quantity had higher overall Parental Stress Index percentiles (50%), than parents of infants who had just one sweat test (30%), indicating greater parental stress. The study recommends six changes to CF newborn screening practices in the Republic of Ireland. en_US
dc.language.iso eng en_US
dc.publisher University of Limerick en_US
dc.subject cystic fibrosis en_US
dc.subject CF en_US
dc.subject genetic testing en_US
dc.title Knowledge is wealth: investigating psychosocial distress and ameliorating knowledge deficiencies in parents of children identified, through newborn screening in Ireland, as carrying an altered cystic fibrosis gene en_US
dc.type info:eu-repo/semantics/masterThesis en_US
dc.type.supercollection all_ul_research en_US
dc.type.supercollection ul_published_reviewed en_US
dc.type.supercollection ul_theses_dissertations en_US
dc.rights.accessrights info:eu-repo/semantics/openAccess en_US


Files in this item

This item appears in the following Collection(s)

Show simple item record

Search ULIR


Browse

My Account

Statistics