Background: Congenital heart disease (CHD) is the most prevalent birth defect, occurring in approximately one percent of all live births. Transitioning to adult health care for adults with CHD (ACHD) presents unique challenges as they navigate normal aging processes along with common long-term complications of CHD. Perceived self-management needs of ACHD’s have not been investigated so little is known about what knowledge they need to successfully transition to adult health care.
Aims: The aims of this study were to 1) assess the self-reported self-management needs of ACHD aged 18 to 30 years in the US, and 2) describe distributions of their perceived self-management needs across factors of lesion severity, gender, age, developmental characteristics, race/ethnicity, and perceived quality of life.
Methods: This descriptive mixed methods study used an online SurveyMonkey questionnaire to collect data. Recruitment methods included a national ACHD society website, clinic and hospital-based ACHD support groups, and nation-wide newspaper advertising. Four instruments comprised the SurveyMonkey link: the ACHD Demographic Questionnaire; the ACHD Self-Management Experience Questionnaire; the Adaptive Behavior Assessment System, Third Edition; and the Stanford Patient Education Research Center’s Quality of Life Visual Numeric. Data were analyzed using descriptive statistics and tool-specific scoring assistant software. Thematic analysis was used for qualitative responses to open-ended questions.
Results: This study sample was comprised of 22 participants: 13 females and 9 males with a median age of 27 years with 15 heart defects. Four major themes emerged pertaining to self-management of ACHD: a plan for the future, coping needs, access to care, and desire for connectivity. Key characteristics of lesion severity, gender, age, developmental characteristics, and perceived quality of life varied according to participants’ most predominantly identified self-management themes.
Conclusions: Results of this study provide an initial assessment of what ACHD identify as needed for optimal self-management. Most participants identified knowing how to account for the impact of CHD on their future as an essential part of adult self-management. Additionally, they reported coping needs related to stressors of living with CHD, abilities to access appropriate ACHD care, and desires for connectivity with other ACHD as important aspects of their self-management.
|Advisor:||McSweeney, Jean C.|
|Commitee:||Mitchell, Anita, Bricker, Christina, Green, Angela, Landes, Reid D.|
|School:||University of Arkansas for Medical Sciences|
|School Location:||United States -- Arkansas|
|Source:||DAI-B 81/2(E), Dissertation Abstracts International|
|Subjects:||Nursing, Health care management|
|Keywords:||ACHD, Adults with congenital heart disease, Quality of life, Self-care, Self-management, Young adults|
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