Date of Award

4-30-2018

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Nursing

First Advisor

Susan Kelley

Second Advisor

Regena Spratling

Third Advisor

Lindsey Cohen

Abstract

Problem: Congenital heart defects are structural abnormalities that exist at birth and often require surgery and medical management from infancy through adulthood. There has been a substantial increase in life expectancy over recent decades with approximately 85-90% of children born with congenital heart disease (CHD) surviving into adulthood. However, despite improvements in life expectancy, many surgeries for moderate to complex CHD include palliative procedures, and these individuals face lifelong cardiac monitoring, self-management of care, and adherence to treatment regimens than may affect their health-related quality of life (HRQOL). There is empirical support that the three innate needs of the Self-Determination Theory (SDT), autonomy, relatedness, and competence, are related to self-management of care and adherence to treatment for adolescents with chronic illnesses. Also, self-management of care and adherence to treatment is necessary for a successful transition into adulthood and improved HRQOL for adolescents with CHD because of the complexity of care. Therefore, the purpose of this study is to examine the relationship among the three innate needs of SDT, self-management of care and adherence to treatment, and its relationship to HRQOL for adolescents with CHD.

Methods: A non-experimental, cross-sectional, correlational design was conducted in a sample of 92 participants, ages 13 to 18 years. Five instruments were used to measure each of the following major variables: Autonomy (Autonomy subscale of the Basic Psychological Needs Scale), Relatedness (Relatedness subscale of the Basic Psychological Needs Scale and the Child and Adolescent Social Support Scale), Competence (Competence subscale of the Basic Psychological Needs Scale and the Generalized Self-Efficacy Scale), Self-Management and Treatment Adherence (UNC TRxANSITION Scale), and HRQOL (Pediatric Quality of Life 4.0 Generic Core Scale). For data analysis, Pearson’s correlations were used to explore associations between variables, and the hypotheses were tested using multiple linear regression. An exploratory analysis was conducted to test for a mediating relationship among variables using the bootstrap method.

Results: Demographic and clinical data were collected. Participants were an average of 15 years of age (SD=1.6), with 59% male. Participants self-reported race-ethnicity as follows: White, non-Hispanic, 65.2%; Black or African-American, 15.2%; Hispanic, 12%; multi-racial, 4.3%; Asian, 2.2%; and American Indian or Alaska Native, 1.1%. For CHD severity, 43.5% had mild CHD, 31.5% had moderate CHD, and 25% had severe CHD. After controlling for covariates, regression analyses revealed relatedness (β=.64) and competence (β=.79) contributed significant variance to HRQOL, R²=.56, p

Conclusion: This study found that relatedness and competence were significantly associated with HRQOL in adolescents with CHD. Autonomy and self-management of care and adherence to treatment did not significantly influence HRQOL. These findings demonstrate the importance of further examining relatedness and competence in adolescents with CHD.

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