Growing up heartsick: The experiences of young women with congenital heart disease

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Abstract
Young women with congenital heart disease (CHD) now survive to confront issues of sexuality, contraception, and pregnancy. Researchers have examined reproductive abilities and infant outcomes in these women, but have not addressed quality‐of‐life issues. Grounded‐theory techniques were used to interview 13 women about the experience of growing up with CHD. The core variable identified was “growing up heartsick.”; This variable included manifestations of growing up with heart disease, such as feeling different from others, parental overprotectiveness, and fears of death. Two other related variables were also found: “growing up female”; and “living against the body.”; “Growing up female”; was characterized by concerns about fertility, contraception, and pregnancy in relation to CHD. Many of the participants were uninformed about their heart disease and reproductive matters. “Living against the body”; was expressed in the women's feelings about their body size and their surgical scars. There were overlapping aspects of the categories; for example, manifestations of “growing up heartsick”; appeared in each of the other categories.

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