A model for the HELLP syndrome: the maternal experience.

OBJECTIVE

To describe the experience of mothers whose pregnancies were complicated with HELLP syndrome (hemolysis, elevated liver enzymes, and low platelets) and to determine if such experiences could be clustered by common themes from which a model could emerge.

DESIGN

Retrospective, descriptive, qualitative study utilizing grounded theory analysis.

SETTING

Participants were interviewed in their homes via telephone. Participants were from Kansas, Maine, Maryland, Michigan, Minnesota, Mississippi, South Carolina, Utah, and Wyoming, representing both urban and rural settings.

PARTICIPANTS

Nine self-selected survivors of HELLP syndrome.

RESULTS

The essential structure of the experience of HELLP syndrome can be expressed as a circle of no control and not knowing, which included the five themes of premonition, symptoms, betrayal, whirlwind, and loss. The pervading emotions expressed were fear (of death), frustration, anger, and guilt. HELLP syndrome represents a unique maternal experience that can be expressed in a model.