"It has its ups and downs": adolescents' quality of life after heart transplantation

Heart transplantation is not curative and results in a high-morbidity chronic illness. Despite this, little research has focused on adolescents' quality of life after heart transplant. Such research is critically needed because of the complex developmental changes experienced by adolescents and the need for transition to self-management during this vulnerable period.

To examine adolescents' perceptions of their quality of life and factors affecting it.

Focused ethnography.

Fourteen adolescents (mean age, 17 years) who had received a heart transplant at least 6 months earlier were recruited from a large children's hospital. The ethnically diverse sample (7 black, 5 white, 1 Asian, and 1 Hispanic) included 8 females and 6 males. Data Collection and Analysis-The adolescents participated in audio-taped qualitative interviews, which were transcribed verbatim and entered into Ethnograph to assist with data management. Thematic analysis was used to identify recurrent themes.

Participants described life after transplant by saying, "It has its ups and downs". Major themes included these: (1) I am normal and I am not normal, (2) I am grateful and I am resentful, and (3) I am managing and I am not managing. The themes reflect the dichotomous nature of the adolescents' experiences and provide insight into the complex needs of adolescents after heart transplant.