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Health Care Burden of Adoptive and Biological Parents of Children with Cleft Lip and Palate

Skelton, Stephanie B.
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1337888323

Abstract Details

2012, MS, University of Cincinnati, Medicine: Genetic Counseling.
Cleft lip and cleft palate (CLP) is one of the most common congenital anomalies and typically requires multiple surgical interventions. In addition to the surgical reconstruction, there are additional medical concerns which are not immediately appreciated, including recurrent ear infections, hearing loss, dental anomalies and speech disorders. In approximately 30% of cases, CLP is associated with genetic disorders. More than 300 disorders have been identified to be associated with clefts (1, 2). In recent years, there has been an increasing number of children adopted from China and a substantial proportion of these children have significant unanticipated medical concerns, such as developmental delays or special needs (3). In this cross-sectional questionnaire-based study, adoptive and biological parents of children with CLP were surveyed regarding their care-related quality of life, the impact on family and their preparedness for the arrival or birth of their child. Biological parents were further categorized as to whether they had learned of their child’s CLP prenatally or at birth. Biological parents who learned prenatally were found to be more overwhelmed by the birth of a child with CLP, but there were no significant differences between adoptive and biological parents’ quality of life or burden of care. The results indicated that there were also no major differences in the ways in which parents prepared for their child’s birth or adoption; however, 64.5% of biological parents who learned about their child’s CLP prenatally met with a multidisciplinary craniofacial team prior to the child’s arrival, compared to only 16% of adoptive parents. One association was found between preparation and quality of life, in that biological parents who found out prenatally about their child’s CLP and spoke with other parents of children with CLP had a lower score on the CarerQOL, indicating a better quality of life (score of 0.87 compared to 3.78, P=0.0097). Although there were not significant differences between the quality of life and caregiver burden for adoptive and biological parents, it was shown that biological parents are initially more overwhelmed, but biological and adoptive parents’ quality of life and impact on family are ultimately affected to the same degree.
Howard Saal, MD (Committee Chair)
Patricia Bender, MSN (Committee Member)
Marilyn Rice, MSE (Committee Member)
Mary Staat, MD (Committee Member)
57 p.
Genetics
international adoption; cleft lip and cleft palate; parents; health-related quality of life; preparation; family impact;

Recommended Citations

Citations

  • Skelton, S. B. (2012). Health Care Burden of Adoptive and Biological Parents of Children with Cleft Lip and Palate [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1337888323

    APA Style (7th edition)

  • Skelton, Stephanie. Health Care Burden of Adoptive and Biological Parents of Children with Cleft Lip and Palate. 2012. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1337888323.

    MLA Style (8th edition)

  • Skelton, Stephanie. "Health Care Burden of Adoptive and Biological Parents of Children with Cleft Lip and Palate." Master's thesis, University of Cincinnati, 2012. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1337888323

    Chicago Manual of Style (17th edition)

ucin1337888323
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© 2012, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.