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Assessing the Genetic Counseling Needs of Parents who have Adopted a Child with Duchenne or Becker Muscular Dystrophy

Gladstone, Amy R
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1367924226

Abstract Details

2013, MS, University of Cincinnati, Medicine: Genetic Counseling.
Introduction: Duchenne / Becker muscular dystrophy (DBMD) is an x-linked condition with a wide variation of clinical presentation due to specific gene mutations and the gender of the affected individual. For families of the most severely affected male patients, care needs, natural history, and potential interventions are paramount. In contrast, reproductive risks may be important for less severely affected individuals as in the case of Becker phenotype or DBMD carrier females. The published literature has suggested the caregiver burden and poor prognosis of DBMD has an impact on the biological family as a whole. Additionally, published literature suggests a high disruption rate of adoptions that involve a child with special needs. However, the literature does not currently describe the role of genetic counselors in addressing the needs of families who have adopted a child with DBMD. Purpose: The purpose of this study was to determine the needs of adoptive families with sons diagnosed with DBMD, and how genetic counseling could be tailored to improve this population's experience. Methods: Participants were adoptive parents of males who were under age 18 and had a DBMD Diagnosis. They were recruited through Cincinnati Children's Hospital Medical Center or Duchenne Connect. Semi-structured qualitative interviews were conducted by telephone with use of an interview guide. The interview content was analyzed for recurrent themes using NVivo© software. These themes were organized into categories to summarize the findings. Results: Thirteen adoptive parents were interviewed. Their needs, relative to the diagnosis of DBMD, genetic counseling, and the genetics information, were not specific to adoptive families. In addition to the anticipated themes, 2 adoption specific points were described. Parents of adopted children with DBMD place importance on communicating the diagnostic implication of DBMD to the biological parents. Second, adoptive parents who questioned their ability to raise a child with special needs prior to the adoption re-considered their negative preconception. Conclusion: This study indicates that adoptive parents need psychosocial support in adjusting to the DBMD diagnosis; although this is not specific to adoptive parents, the parents also indicated that the diagnosis caused a short-term reconsideration of whether the adoption was the right choice. Interestingly, adoptive parents indicated a strong and unexpected desire for recurrence risk information and placed importance on communicating this risk with the biological parents. Due to the frequent inclusion of genetic counselors in diagnosing DBMD, an awareness of the adoption-specific and non-specific informational needs are important in tailoring a genetic counseling session to best meet an adoptive parent's needs.
Robert Hopkin, M.D. (Committee Chair)
Martha Walker (Committee Member)
38 p.
Surgery
Adoption; Genetic Counseling; Duchenne Muscular Dystrophy; Becker Muscular Dystrophy; Qualitative Research; Special-Needs Adoption;

Recommended Citations

Citations

  • Gladstone, A. R. (2013). Assessing the Genetic Counseling Needs of Parents who have Adopted a Child with Duchenne or Becker Muscular Dystrophy [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1367924226

    APA Style (7th edition)

  • Gladstone, Amy. Assessing the Genetic Counseling Needs of Parents who have Adopted a Child with Duchenne or Becker Muscular Dystrophy. 2013. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1367924226.

    MLA Style (8th edition)

  • Gladstone, Amy. "Assessing the Genetic Counseling Needs of Parents who have Adopted a Child with Duchenne or Becker Muscular Dystrophy." Master's thesis, University of Cincinnati, 2013. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1367924226

    Chicago Manual of Style (17th edition)

ucin1367924226
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