Feeling Cared For Versus Experiencing Added Burden: Parents' Interactions With Health

This article reports on parental responses to and needs from health-care providers during pregnancy with a lethal fetal diagnosis (LFD). Sixteen mothers and 14 partners participated in a longitudinal, phenomenological study of continuing a pregnancy with an LFD. During individual and joint couple interviews conducted during pregnancy and postpartum, parents described numerous health-care interactions throughout pregnancy. From the participants' words, Categories of the Content, Process, and Outcome of these interactions emerged. They sought health care for the Content (information and expert guidance), but they desired providers who maintain hope, were caring and nonjudgmental, used a straightforward manner, and showed sensitivity to their developmental journey (Process). They also desired health-care systems that provided continuity of care and minimized waiting times (Process). We propose data-based recommendations for health-care providers to address the two identified opposing Outcomes: Feeling Cared For and Experiencing Added Burden