Skip to Main Content
 

Global Search Box

 
 
 
 

Files

File List


ucin1343068081.pdf (948.67 KB)

ETD Abstract Container

Abstract Header

A Descriptive Study on the Effect of Carrier Status on Mothers’ Wellbeing and Adaptation to Duchenne and Becker Muscular Dystrophy

Khudai, Chandni
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1343068081

Abstract Details

2012, MS, University of Cincinnati, Medicine: Genetic Counseling.
Duchenne and Becker muscular dystrophy (DBMD) are progressive and debilitating neuromuscular disorders caused by X-linked recessive mutations in the dystrophin gene. DMD presents in childhood and limits life to the second or third decade. BMD, a relatively milder form, presents in childhood to adulthood. Although improvements in the care of patients with DBMD have enhanced patients’ quality and duration of life, there has been no effect on long-term prognosis. Little is known of the psychological morbidity associated with DBMD on families and patients. Birth mothers of children with DBMD, who are themselves carriers of DBMD, may have increased psychological burden. The purpose of this analysis was to describe differences in adaptation and wellbeing between mothers who were carriers and those who were not carriers of DBMD. Data was collected from mothers with biological children with DBMD using a mixed-methods web-based survey. The primary outcome variable, adaptation score, was generated for each participant using the Psychological Adaptation to Illness Scale. Various other scales and investigator-developed questions were also used to measure secondary outcome variables. One hundred twenty-five participants completed the questionnaire and 116 responses were analyzed. Fifty-one (44%) were carriers of a DMD gene mutation, 47 (40%) were not carriers, and 18 (16%) did not know their carrier status. The mean adaptation score was 3.68 (SD=0.9) for carriers and 3.25 (SD=0.9) for non-carriers. Carriers showed better adaptation and higher perceived control than non-carriers (pooled t-test, p=0.02 and p=0.05, respectively). These results were limited by several factors including small sample size, recruitment bias, and increased risk of type 1 error resulting from multiple tests on the data. An open-ended question completed by the carriers revealed various positive and negative effects of being a carrier. In conclusion, carrier status may affect mothers’ adaptation to DBMD and perceived control in this population. A larger, more representative sample of participants may be beneficial in confirming these findings.
James Collins, PhD (Committee Chair)
Kathleen Kinnett, MSN (Committee Member)
Xue Zhang, PhD (Committee Member)
Martha Walker (Committee Member)
50 p.
Genetics
adaptation; carrier status; duchenne muscular dystrophy; mothers; becker muscular dystrophy; ;

Recommended Citations

Citations

  • Khudai, C. (2012). A Descriptive Study on the Effect of Carrier Status on Mothers’ Wellbeing and Adaptation to Duchenne and Becker Muscular Dystrophy [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1343068081

    APA Style (7th edition)

  • Khudai, Chandni. A Descriptive Study on the Effect of Carrier Status on Mothers’ Wellbeing and Adaptation to Duchenne and Becker Muscular Dystrophy. 2012. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1343068081.

    MLA Style (8th edition)

  • Khudai, Chandni. "A Descriptive Study on the Effect of Carrier Status on Mothers’ Wellbeing and Adaptation to Duchenne and Becker Muscular Dystrophy." Master's thesis, University of Cincinnati, 2012. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1343068081

    Chicago Manual of Style (17th edition)

ucin1343068081
487
© 2012, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.