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Caregivers of Individuals with Rubinstein-Taybi Syndrome: Perspectives, Experiences and Relationships with Healthcare Professionals

Webster, Joshua
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1592136452814679

Abstract Details

2020, MS, University of Cincinnati, Medicine: Genetic Counseling.
Introduction: Rubinstein-Taybi syndrome (RTS) is a rare genetic disorder, with an incidence of roughly 1 / 100,000 - 1 / 125,000 live births. The majority of adults with RTS live at home with their parents, making caring for individuals with RTS a lifelong role. There are several difficulties for caregivers of individuals with rare disorders. Family-centered care (FCC) is a healthcare delivery approach that aims to create an equal partnership between caregivers and providers. FCC has been shown to improve parental wellbeing, their knowledge of the condition and care, and improve their feelings of self-efficacy and personal control. Methods: Primary family caregivers of individuals with RTS took an online mixed-method survey that contained three primary components including a demographic survey, the Measures of Processes of Care -20 (MPOC-20), a measure of the FCC an individual feels they receive, and a qualitative assessment of negative and positive interactions with medical professionals and priority areas for improvement. Results: Sixty-three caregivers of individuals with RTS completed the survey. The median total score on the MPOC-20 was 4.5, lower than that seen in studies of parents caring for children with pediatric cancer or autism spectrum disorders. All aspects of FCC were ranked as important by caregivers. In the qualitative responses, parents noted that experiences with medical professionals would be improved if healthcare providers actively provided FCC, collaborated with parents and other providers, reviewed records before the visit, respected caregivers’ time and expertise, gave a more balanced description of the condition, showed greater respect towards their loved ones and included them in the conversation, and made an effort to learn about RTS. Discussion: The changes that parents would like to see in their care were not specific to one discipline, and the changes parents would like to see could be implemented by all healthcare specialists. While caregivers report that they receive moderate levels of FCC, they indicated that there were still areas of FCC that could be improved and that they would like to see enacted by all providers who see them and their loved ones. Conclusion: Our results show that most parent caregivers of children with RTS desire improvements in multiple aspects of FCC.
Elizabeth Schorry, M.D. (Committee Chair)
Katherine Bowers, Ph.D. (Committee Member)
Kathleen Collins, M.S. (Committee Member)
Ilka Riddle, Ph.D. (Committee Member)
Susan Wiley, M.D. (Committee Member)
71 p.
Genetics
Rubinstein-Taybi syndrome; rare disorders; family-centered care; Measures of Processes of Care-20; mixed-methodology

Recommended Citations

Citations

  • Webster, J. (2020). Caregivers of Individuals with Rubinstein-Taybi Syndrome: Perspectives, Experiences and Relationships with Healthcare Professionals [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1592136452814679

    APA Style (7th edition)

  • Webster, Joshua. Caregivers of Individuals with Rubinstein-Taybi Syndrome: Perspectives, Experiences and Relationships with Healthcare Professionals. 2020. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1592136452814679.

    MLA Style (8th edition)

  • Webster, Joshua. "Caregivers of Individuals with Rubinstein-Taybi Syndrome: Perspectives, Experiences and Relationships with Healthcare Professionals." Master's thesis, University of Cincinnati, 2020. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1592136452814679

    Chicago Manual of Style (17th edition)

ucin1592136452814679
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This open access ETD is published by University of Cincinnati and OhioLINK.