Self-Care in Emerging Adults with Congenital Heart Disease

Wednesday, July 13, 2011: 3:45 PM

Desiree Fleck, CRNP1
Victoria Vaughan Dickson, PhD, RN, CRNP2
Janet Deatrick, RN, PhD, FAAN1
Barbara Riegel, RN, CS, FAAN1
(1)School of Nursing, University of Pennsylvania, Philadelphia, PA
(2)College of Nursing, New York University, New York, NY

Learning Objective 1: Describe self-care practices of emerging adults with congenital heart disease.

Learning Objective 2: Define emerging adults


 To describe the performance of self-care in emerging adults with CHD and the factors that influence it.  

Methods:  In this qualitative descriptive study, 35 emerging adults (aged 18-25 years) with CHD were interviewed.  Purposive sampling was used to obtain heterogeneity in gender, self-care and disease complexity.  Semi-structured interviews were audiotaped, transcribed verbatim and analyzed using content analysis.  Within case and across case analysis resulted in the identification of themes and subthemes that described the performance of self-care. 


The sample was 42% female, 5.7% African American, mean age 21 (SD=2.3 years); 46% had moderately complex CHD.  Evident in the narrative accounts, self-care begins with shared responsibility and evolves into independent self-care.  Independent participation in medical appointments, preventing symptoms and taking medications were key behaviors but self-care was inconsistent.  While independent participation was important, participants rarely attended appointments alone. “I talk, but always like someone there in case of bad news.”  Participants recognized the importance of symptom prevention “...stay hydrated and rest between dancing and I will be okay.”  Taking medications was usually an independent activity.  “I have been responsible for my medications since I have taken them.”    Factors influencing self-care included knowledge, developmental stage, family, beliefs and attitudes.  Self-care was a developmental task that came with emotional maturity.


Self-care was described as a process as well as a series of tasks that were defined and shaped through their relationships with their family caregivers and health care providers.  Researchers need to test interventions focused not only on the patients but also on parents and providers to encourage self-care.