Nurses’ Perceptions of Quality of Life for Adolescents with Congenital Heart Disease

ABSTRACT

The purpose of this study was to understand nurses’ perceptions and experiences regarding Quality of Life (QOL) of adolescents with complex congenital heart disease (CHD). Interpretive, hermeneutic, phenomenology was used to explore the perceptions and experiences of nurses who care for adolescents with complex CHD. The participants included 6 female registered nurses with experience taking care of adolescents with complex CHD. Data were collected using semi-structured interviews. Data analysis revealed 4 themes: QOL depends on how the psychological and social issues are interwoven with the physical; finding that balance between overprotection and too much freedom; setting goals to envision a future; and not being defined by a CHD. These results indicate that understanding nurses’ perspectives and experiences may contribute to effective guidance for adolescents with complex CHD transitioning into adulthood.

KEYWORDS:

• Adolescents
• congenital heart disease
• nurses
• phenomenology
• quality of life
• transition

Acknowledgments

The author thanks Dr. Minick and Dr. Kelley for their expertise and support during this research study. The author would also like to thank the nurses who participated in the study and shared their experiences.

Declaration of interest

The authors report no actual or potential conflict of interests.

Additional information

Funding

This work was supported by the Kaiser Research Award, Georgia State University.