A Qualitative Assessment of Adolescent Girls' Perception of Living with Congenital Heart Disease: Focusing on Future Pregnancies and Childbirth

J Pediatr Nurs. 2018 Jan-Feb:38:e12-e18. doi: 10.1016/j.pedn.2017.11.003. Epub 2017 Nov 16.

Abstract

Purpose: Congenital heart disease (CHD) is the most common birth anomaly in Japan, occurring in approximately 10.6 of every 1,000 live births. Advancements in medical and surgical care have increased births by women diagnosed with CHD. The study's purpose was to examine the perceptions of pregnancy and childbirth among adolescent girls with CHD.

Design and methods: Twelve semi-structured interviews were conducted, and the data were analyzed using a modified grounded-theory approach.

Results: Three categories and 16 subcategories were extracted. Adolescent girls with CHD reported feelings of distress and anxiety while struggling with their disease, and feared how their disease might negatively influence their future pregnancy. These concerns were related to a desire to become familiar with CHD. The girls also explored how their disease would be managed during pregnancy and childbirth. Overall, these perceptions were influenced by the girls' acceptance of their disease, and support from family, friends, and healthcare professionals.

Conclusions: Healthcare professionals might assess adolescent girls' awareness of their disease before discussing pregnancy and childbirth risks. To encourage them to understand and cope with their disease, healthcare professionals might provide interventions tailored to the timing, stage, and degree of pregnancy and childbirth awareness. This could allow safer life planning, especially concerning pregnancy and childbirth decisions.

Practice implications: To address adolescent girls' needs, healthcare professionals should continuously assess their awareness of pregnancy and childbirth as well as their psychological status, alongside CHD issues.

Keywords: Adolescent; Childbirth; Congenial heart disease; Perception; Pregnancy; Qualitative research.

MeSH terms

  • Adolescent
  • Adolescent Behavior / psychology
  • Female
  • Forecasting
  • Grounded Theory
  • Heart Defects, Congenital / physiopathology*
  • Heart Defects, Congenital / psychology*
  • Heart Defects, Congenital / therapy
  • Humans
  • Interviews as Topic
  • Japan
  • Life Style
  • Parturition / psychology*
  • Perception
  • Pregnancy
  • Pregnancy in Adolescence / psychology*
  • Qualitative Research
  • Quality of Life*
  • Risk Assessment
  • Sickness Impact Profile