Sample and Data Collection
The sample consisted of 10 adolescents (six females) who were 13–17 years of age at the first interview, with a range of cardiac diagnoses for which they had each had at least two heart surgeries. Despite the diversity of diagnoses, timing of treatment, and family configuration, commonalities and shared experiences emerged early in the data collection and analysis. Data were collected using semistructured interviews with the teen alone. Interviews were 45 to 120 minutes long. One teen participated in 1 interview, 6 participated in 2 interviews, and 3 teens participated in 3 interviews, for a total of 22 interviews. Ten interviews took place in the participants' homes, 7 were by telephone, and 5 took place in conjunction with the teen's appointment at the university hospital. Most of the interviews were conducted by the second author or the project coordinator, both with pediatric nursing backgrounds and extensive qualitative interviewing experience. Teens completed the Pediatric Quality of Life Inventory and the cardiac module developed by at the second interview. The scores from these surveys were not a source of data for this study, but filling out the survey was an activity to elicit conversation about their quality of life and to ascertain whether such a tool could be useful for youths with CHD as a relevant way of identifying quality-of-life issues from their perspective. The two approaches, semistructured interviews that included numerous open-ended questions and the questionnaire activity, were used to capture how teens with CHD talked about and reflected on quality-of-life issues. Guiding questions are provided at the end of the article. The first and second authors worked closely in the data analysis and received input from the other authors regarding conceptualization and conclusions.