?url_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Adc&rft.relation=http%3A%2F%2Fd-scholarship-dev.library.pitt.edu%2F10033%2F&rft.title=A+Qualitative+Analysis+of+Self-Care+Management+Resources+Among+Caregivers+of+Children+with+Sickle+Cell+Disease+for+the+Development+of+Parent+Advocacy+Toolkits&rft.creator=Post%2C+Samantha+Diane&rft.description=Sickle+Cell+Disease+(SCD)+is+an+inherited+blood+disorder+that+affects+80%2C000+individuals+in+the+United+States.+SCD+is+of+public+health+significance+as+individuals+with+this+disease+are+at+risk+of+early+mortality%2C+morbidity%2C+and+disability.+These+conditions+arise+as+a+result+inadequate+clinical+treatment+and+improper+self-care+management%2C+which+are+potentially+modifiable+with+optimum+disease+management.+The+Theory+of+Self-Care+Management+for+Sickle+Cell+Disease+proposes+that+self-care+management+resources+have+the+ability+to+improve+poor+health+outcomes%3B+however%2C+previous+studies+indicate+that+individuals+with+SCD+and+their+caregivers+lack+appropriate+resources.+Consequently%2C+this+study+was+designed+to+qualitatively+assess+where+caregivers+receive+self-care+management+resources%3B+determine+what+type(s)+of+information+has+already+been+acquired%3B+learn+about+the+type(s)+of+self-care+management+resources+that+intended+audiences+need%3B+and+explore+the+most+appropriate+media+and+channels+to+disseminate+self-care+management+resources.+A+focus+group+was+conducted+with+ten+caregivers+of+children+with+SCD+to+facilitate+a+discussion+to+address+these+specific+questions.+Transcripts+were+analyzed+using+the+questions+from+the+moderator's+guide+to+generate+a+table+to+identify+themes+that+emerged+throughout+the+discussion.+Results+revealed+that+caregivers+primarily+relied+on+routine+services+to+provide+self-care+management+resources+and+sickle+cell+educational+information+was+found+to+be+the+only+self-care+management+resource+provided.+This+resource+provided+%22basic%22+information%2C+causing+caregivers+to+seek+additional+information+from+alternative+sources+like+the+internet+and+by+asking+questions.+Caregivers+did+not+acknowledge+receiving+additional+resources%2C+nor+did+they+report+receiving+self-care+management+resources+for+their+children.+Caregivers+acknowledged+the+importance+of+these+resources+and+suggested+that+they+be+disseminated+through+all+available+media+by+obstetrician%2Fgynecologist's+offices+and+schools+to+caregivers+based+on+their+individual+preferences+for+receiving+the+resources+all+at+once+or+in+stages.+Furthermore%2C+the+caregivers+began+acknowledging+that+it+may+be+their+responsibility+to+provide+information+and+education+to+their+communities.+Consequently%2C+additional+self-care+management+resources+should+be+created+by+other+caregivers+and+peers+based+on+their+experiences.+Further+research+should+be+conducted+to+develop+and+pretest+these+self-care+management+resources+and+to+determine+their+impact+on+health+outcomes.&rft.date=2009-01-29&rft.type=University+of+Pittsburgh+ETD&rft.type=PeerReviewed&rft.format=application%2Fpdf&rft.language=en&rft.identifier=http%3A%2F%2Fd-scholarship-dev.library.pitt.edu%2F10033%2F1%2Fsdpost_etd2008.pdf&rft.identifier=++Post%2C+Samantha+Diane++(2009)+A+Qualitative+Analysis+of+Self-Care+Management+Resources+Among+Caregivers+of+Children+with+Sickle+Cell+Disease+for+the+Development+of+Parent+Advocacy+Toolkits.++Master's+Thesis%2C+University+of+Pittsburgh.++++(Unpublished)++