Antecedents and Outcomes of Self-Care in Adults with Congenital Heart Disease Open Access

Abstract

Background : Adults with congenital heart defects (ACHD) face long-term complications related to prior surgery, abnormal anatomy, and acquired cardiovascular conditions. Although self-care is an important part of chronic illness management, few studies have explored ACHD self-care.

Purpose : The purpose of this study was to describe the antecedents and outcomes of self-care in the ACHD population, guided by the Family and Self-Care Framework.

Methods : Persons with moderate or severe ACHD were recruited from a single ACHD center. Self-care (maintenance, monitoring and management behaviors), antecedents (individual, clinical, knowledge, behavioral, and family-related factors), and outcomes (functional capacity, symptom burden, and 3-month health resource use) were collected via self-report, chart review, and a six-minute walk test (6MWT). Bivariate correlations, linear and logistic regression were used for analyses.

Results: A total of 132 persons were included (mean age 36 ± 11 years, 55% female, 81% Caucasian, 54% severe ACHD). Only 44.7%, 27.3%, and 23.3% of participants performed adequate self-care maintenance, monitoring and management, respectively. In regression analysis, higher self-efficacy, higher education, male gender, higher perceived family support, and more comorbidities explained 25% of the variance in self-care maintenance (R²=.248, F(5, 123)=9.44, p<.001). Older age, higher depressive symptoms, higher self-efficacy, and higher NYHA Class explained 23% of the variance in self-care monitoring (R²=.232, F(2, 124)=10.66, p<.001). Higher self-efficacy and higher NYHA Class explained 9% of the variance in self-care management (R²=.094, F(2, 80)=5.27, p=.007). Participants walked an average of 1365 ± 275 feet on the 6MWT and experienced 7.4 ± 4.8 symptoms. A total of 101 (80.8%) participants experienced 310 healthcare encounters (275 office visits, 21 hospitalizations, 20 ED visits). Self-care management (beta=-44.20, p=.001) and monitoring (beta=-14.59, p=.03) were independently associated with functional capacity; self-care maintenance and monitoring were independently associated with symptom burden (beta=-.39, p<.001; beta=1.52, p<.001); higher self-care monitoring was an independent predictor of >1 health encounter (OR=1.21, 95% CI [1.09, 1.35], p<.001).

Conclusions: Suboptimal self-care is common among persons with ACHD, and is associated with worse functional health. Modifiable factors of self-efficacy and perceived family support may be important targets of future self-care interventions to improve health outcomes in the ACHD population.

Table of Contents

Table of Contents

Chapter 1 - Introduction ……….……………………………………………….....…… 1

Figure 1.1 Family and Self-Care Framework…...…..………..….…...…....5

Figure 1.2 Family and Self-Care Framework for ACHD.…..…..………….9

Figure 1.3 Social Relations and Health…….…………….…………......……..19

Table 1.1 Sample Size Projections……………...………………….......……….26

Table 1.2 Self-Reported Instruments.…………..………………......………….31

Table 1.3 Targeted/Planned Enrollment…………….…………......………….39

Chapter 2 - Self-Care in Adults with Congenital Heart Disease: A Literature

Synthesis………………………………..………………………………………….........…..61

Figure 2.1 Family and Self-Care Framework………………..…..……….....83

Figure 2.2 ACHD Self-Care Search Terms…………………..…….....……….84

Table 2.1 Best Evidence Synthesis Rating System…..….………..……...85

Table 2.2 Antecedents of Self-Care in ACHD…………………....….....……86

Table 2.3 Gaps in the Literature for ACHD Self-Care………….…...…….87

Chapter 3 - Antecedents of Self-Care in Adults with Congenital Heart

Disease……………………………………………………………………….…..…............102

Figure 3.1 Family and Self-Care Framework for ACHD…………..…….126

Table 3.1 Individual and Clinical Characteristics………………….…..…..127

Table 3.2 Bivariate Relationships Between Self-Care and Antecedent

Factors …………………………………………….…….…............................……128

Table 3.3 Multivariate Regression Analysis……………………......….……129

Figure 3.2 Relationship Between Adequate Level of Self-Care and Self-

Efficacy………………………………………………………..............................…130

Chapter 4 - Relationship Between Self-Care, Functional Health, and Health

Resource Use in Adults with Congenital Heart Defects………………...140

Table 4.1 Inclusion and Exclusion Criteria……………...…………..........156

Table 4.2 Baseline Characteristics……………...……………..……..........…157

Table 4.3 Health Resource Use…………………...……………...........…..….158

Table 4.4 Multivariate Regression Analysis………………….......……..….159

Figure 4.1 Relationship Between Most Burdensome Symptoms and

Self-Care ……………………………..……………………..............................…160

Chapter 5 - Conclusion ……………………………………........……..…………….166

Table 4.1 Inclusion and Exclusion Criteria……………………….........…..184

Appendix A

Emory IRB Approval Letter

Written Informed Consent

HIPAA Authorization

REDCap Database Forms

Permission to Reprint Figure

Table 2.4. Literature Synthesis Supplemental Table

About this Dissertation

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School	Laney Graduate School
Department	Nursing
Degree	PhD
Submission	Dissertation
Language	English
Research Field	Health Sciences, Nursing
Keyword	congenital heart disease self-management self-care
Committee Chair / Thesis Advisor	Reilly, Carolyn Miller, Emory University Dunbar, Sandra B, Emory University
Committee Members	Book, Wendy M, Emory University Butler, Javed, Emory University

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