"I am not alone": a survey of women with peripartum cardiomyopathy and their participation in an online support group.

ABSTRACT

Peripartum cardiomyopathy is a devastating condition in which women without a previously identified heart condition experience heart failure in the ninth month of pregnancy or in the first 5 months after delivery of a baby. Online support groups are virtual communities for people affected by the same social or health issue. No literature exists on the benefits of women involved in an online support group for peripartum cardiomyopathy. The purpose of this descriptive study was to determine the benefits of participation in the online support group for peripartum cardiomyopathy based on a survey of active members of the group. All contacts between researchers and respondents were through e-mail. A survey of open-ended and Likert-type questions was used. Twelve women, aged 19 to 34 years, participated; all had a diagnosis of peripartum cardiomyopathy. This online support group is a vital resource for women with peripartum cardiomyopathy. Benefits to participation in the online support group included getting and sharing information, exchanging stories, being understood by other women, and gaining hope. Nurse practice implications include referring patients to reputable Web sites and support groups and serving as a professional facilitator in an online group.