Congenital heart disease is the most common birth defect globally, affecting both children and their families. Twenty –five percent of children experiencing a CHD birth defect are diagnosed with complex CHD (cCHD), signifying critical heart dysfunction requiring one or more open-heart surgeries during the first year of life. With medical advances, cCHD survival rates have almost tripled in the last three decades. This has resulted in an increase in the number of morbidities associated with cCHD, which is drastically impacting the need to support quality of life outcomes for a child with cCHD and their family. The two most prevalent unaddressed risks for quality of life outcomes in the cCHD population are child and caregiver mental health and child's neurodevelopmental disabilities. Congenital heart disease is the most common birth defect globally, affecting both children and their families. Twenty-five percent of children experiencing a CHD birth defect are diagnosed with complex CHD (cCHD), signifying critical heart dysfunction requiring one or more open-heart surgeries during the first year of life. With medical advances, cCHD survival rates have almost tripled in the last three decades. This has resulted in an increase in the number of morbidities associated with cCHD, which is drastically impacting the need to support quality of life outcomes for a child with cCHD and their family. The two most prevalent unaddressed risks for quality of life outcomes in the cCHD population are child and caregiver mental health and child's neurodevelopmental disabilities. The present study sought to address the relationship between caregiver knowledge of cCHD developmental challenges (i.e., outcomes related to neurodevelopmental disabilities, mental health, and provider quality-care approach) and children's and caregiver's quality of life outcomes, inclusive of academic functioning ability of children with cCHD, children with cCHD and their caregivers' mental health functioning, and the overall satisfaction with the nature of the healthcare provider of the child with cCHD. A total sample size of N = 46 participants were included in the current study. Results that caregivers' knowledge of cCHD risks to quality of life outcomes explained a much greater percentage of the variance in caregiver satisfaction with healthcare providers (R2 = 0.350, p < 0.001) compared to number of surgical interventions (R2 = 0.058, p = 0.047). Clinical implications and implementation for use of a holistic, integrated approach are strengthened by the study findings.
| Identifer | oai:union.ndltd.org:unt.edu/info:ark/67531/metadc1752366 |
| Date | 12 1900 |
| Creators | Hutchinson, Jessica B |
| Contributors | Middlemiss, Wendy, Mitchell, Yolanda, Boesch, Miriam, Woolf-King, Sarah |
| Publisher | University of North Texas |
| Source Sets | University of North Texas |
| Language | English |
| Detected Language | English |
| Type | Thesis or Dissertation |
| Format | vi, 57 pages, Text |
| Rights | Public, Hutchinson, Jessica B, Copyright, Copyright is held by the author, unless otherwise noted. All rights Reserved. |
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