Raising fragile : the experiences & perspectives of the families of male Fragile X individuals Public Deposited

http://ir.library.oregonstate.edu/concern/graduate_thesis_or_dissertations/jd472z856

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  • The purpose of this qualitative research study was to address the experiences and perspectives of those who have grown up with and raised males who have Fragile X syndrome. The methods used in the study included surveying and interviewing the family members of adult individuals with Fragile X, reviewing resources for Fragile individuals entering adulthood, and researching existing data and the memoirs of other families who have experienced the fragile cycle and lifestyle. This study resulted in many families coming forward, expressing their thanks for attempting to identify resources for fragile families, as well as expressing interest in participating in the study. Findings resulted in shared memories of joyous times spent with the "proverbial child" of the households interviewed, as well as reflections upon difficult experiences laced with seizures, fits of rage, and loss. The families interviewed bared their souls in hopes to provide insight, hope, and forethought to families who either are, or have yet to begin the journey of helping a fragile loved one enter adulthood.
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  • description.provenance : Approved for entry into archive by Laura Wilson(laura.wilson@oregonstate.edu) on 2013-05-16T22:02:01Z (GMT) No. of bitstreams: 2 license_rdf: 1223 bytes, checksum: d127a3413712d6c6e962d5d436c463fc (MD5) ShorbJoAnneE2013.pdf: 1216293 bytes, checksum: 5a61f9762892bbed91fbdcd12369e928 (MD5)
  • description.provenance : Submitted by JoAnne Shorb (shorbj@onid.orst.edu) on 2013-05-10T01:02:35Z No. of bitstreams: 2 license_rdf: 1223 bytes, checksum: d127a3413712d6c6e962d5d436c463fc (MD5) ShorbJoAnneE2013.pdf: 1216293 bytes, checksum: 5a61f9762892bbed91fbdcd12369e928 (MD5)
  • description.provenance : Made available in DSpace on 2013-05-16T22:02:01Z (GMT). No. of bitstreams: 2 license_rdf: 1223 bytes, checksum: d127a3413712d6c6e962d5d436c463fc (MD5) ShorbJoAnneE2013.pdf: 1216293 bytes, checksum: 5a61f9762892bbed91fbdcd12369e928 (MD5) Previous issue date: 2013-04-24
  • description.provenance : Approved for entry into archive by Julie Kurtz(julie.kurtz@oregonstate.edu) on 2013-05-16T21:37:22Z (GMT) No. of bitstreams: 2 license_rdf: 1223 bytes, checksum: d127a3413712d6c6e962d5d436c463fc (MD5) ShorbJoAnneE2013.pdf: 1216293 bytes, checksum: 5a61f9762892bbed91fbdcd12369e928 (MD5)

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