Vanessa A Johnson, Yolanda M Powell-Young, Bradley Brossman, Elecia Kim, Stephanie L Sherman
Fragile X syndrome, caused by a mutation in the FMR1 gene, is the most commonly inherited form of intellectual disability in children. Because the physical and early behavioral signs of Fragile X are often subtle, parents are often in the best position to advance early recognition and treatment. The Biopsychosocial Screening Inventory for Fragile X (BIPSSI-FX) was designed as an early detection parent-response inventory. A mixed-methods exploratory study of 886 caregivers, recruited from 22 countries across 5 continents, of children aged 1 through 18 years was used to refine a reliable and valid instrument.
{"title":"A Parent-Response Screening Inventory for Fragile X Syndrome: Development & Testing with an International Sample.","authors":"Vanessa A Johnson, Yolanda M Powell-Young, Bradley Brossman, Elecia Kim, Stephanie L Sherman","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Fragile X syndrome, caused by a mutation in the FMR1 gene, is the most commonly inherited form of intellectual disability in children. Because the physical and early behavioral signs of Fragile X are often subtle, parents are often in the best position to advance early recognition and treatment. The Biopsychosocial Screening Inventory for Fragile X (BIPSSI-FX) was designed as an early detection parent-response inventory. A mixed-methods exploratory study of 886 caregivers, recruited from 22 countries across 5 continents, of children aged 1 through 18 years was used to refine a reliable and valid instrument.</p>","PeriodicalId":88276,"journal":{"name":"Journal of theory construction & testing","volume":"17 2","pages":"38-44"},"PeriodicalIF":0.0,"publicationDate":"2013-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12443307/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088209","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Little is known about the lives of adults with sickle cell disease (SCD). This article reports findings from a qualitative pilot study, which used life review as a method to explore influences on health outcomes among middle-aged and older adults with SCD, Six females with SCD, recruited from two urban sickle cell clinics in the U.S., engaged in semi-structured, in-depth life review interviews. MaxQDA2 software was used for qualitative data coding and analysis. Three major themes were identified: vulnerability factors, self-care management resources, and health outcomes. These themes are consistent with the Theory of Self-Care Management for Sickle Cell Disease. Identifying vulnerability factors, self-care management resources, and health outcomes in adults with SCD may aid in developing theory-based interventions to meet health care needs of younger individuals with SCD. The life review process is a useful means to gain insight into successful aging with SCD and other chronic illnesses.
{"title":"Successful Aging with Sickle Cell Disease: Using Qualitative Methods to Inform Theory.","authors":"Coretta M Jenerette, Gloria Lauderdale","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Little is known about the lives of adults with sickle cell disease (SCD). This article reports findings from a qualitative pilot study, which used life review as a method to explore influences on health outcomes among middle-aged and older adults with SCD, Six females with SCD, recruited from two urban sickle cell clinics in the U.S., engaged in semi-structured, in-depth life review interviews. MaxQDA2 software was used for qualitative data coding and analysis. Three major themes were identified: vulnerability factors, self-care management resources, and health outcomes. These themes are consistent with the Theory of Self-Care Management for Sickle Cell Disease. Identifying vulnerability factors, self-care management resources, and health outcomes in adults with SCD may aid in developing theory-based interventions to meet health care needs of younger individuals with SCD. The life review process is a useful means to gain insight into successful aging with SCD and other chronic illnesses.</p>","PeriodicalId":88276,"journal":{"name":"Journal of theory construction & testing","volume":"12 1","pages":"16-24"},"PeriodicalIF":0.0,"publicationDate":"2008-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762231/pdf/nihms112265.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"28071210","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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