research to assess parents’ quality of life and perceptions of their role and skills as parents should follow them for at least five years after a perinatal death.
Because of the differing physical and emotional impact of pregnancy on women compared to men, fathers and mothers may respond differently to information concerning fetal or infant diagnosis and prognosis. They may also differ in the rates at which they comprehend or assimilate information. Such differences may amplify already significant emotional stress or preexisting psychological disorders and may lead to confusion about the wishes of parents for interventions. Obstetricians, pediatricians, nurses, social workers, psychologists, and bereavement specialists would benefit from prospective studies that (1) investigate the coping mechanisms of parents who are confronted by an antenatal or postnatal fetal diagnosis that is potentially lethal and (2) explore parental perceptions of the benefits and burdens of different interventions (including palliative care) stratified by fetal or neonatal diagnosis and by timing of diagnosis.
Several perinatal interventions undertaken in the 1970s and 1980s were reported to benefit mothers during the first six months after a perinatal loss (Giles, 1970; Kennell et al., 1970; Parkes, 1980; Forrest et al., 1981, 1982). No data are, however, available on the long-term impact of these interventions, and no randomized trials have assessed the benefits of specific interventions (Chambers and Chan, 2000). Long-term (one to five years), prospective studies of parents who have received different interventions are needed. They should be stratified by fetal or neonatal diagnosis, reproductive history, and socioeconomic status and cultural characteristics. (See also the discussion below of directions for bereavement research.)
In addition to understanding parental experience with lethal or potentially lethal perinatal diagnosis or death, research attention also should extend to siblings subjected to the stress of perinatal loss and to the grief and parental chaos prompted by such loss. The committee located no longitudinal studies of parental perceptions of surviving siblings, self-perceptions of surviving siblings, or interactions between parents and surviving or later-born siblings.
Although the sensitivity and specificity of antenatal ultrasound diagnosis have been carefully defined (see, e.g., Sabbagha et al., 1985; Brocks and Bang, 1991; Chitty et al., 1991; Ewigman et al., 1993), little research (e.g., Cox et al., 1987; Michelacci et al., 1988; Cromie, 2001) documents the short-term and long-term emotional stress on parents of antenatal ultrasound, including when the procedure leads to a diagnosis of a lethal or potentially lethal condition. More research has focused on prenatal genetic testing and choices about pregnancy termination (see, e.g., Vintzileos and Egan, 1995; Bergsjo and Villar, 1997; Malone et al., 2000; Rillstone and Hutchison, 2001). Given the ubiquitous use of ultrasound and the known