A focus group study of DES daughters: implications for health care providers

DES-victims distrust of the medical profession, Psycho-oncology, 2000

image of doctors-and-DES
This 2000 study showed DES Daughters felt that physicians lacked information about the long-term health effects of DES exposure and as a result did not give them accurate information. Furthermore, they felt that physicians were dismissive of their concerns and often gave what they felt to be false reassurances.

2000 Study Abstract

A focus group study of women exposed to diethylstilbestrol (DES) in utero (DES daughters) was conducted to gain understanding about exposure to this drug from a patient perspective.

  • Focus group participants reported that learning about their DES exposure was devastating; they experienced
    • strains in their family relationships,
    • emotional shock,
    • a feeling that their health concerns were not appreciated by others
    • and, to some degree, a sense of social isolation.
  • Although many were aware of the need for special gynecological exams and high-risk prenatal care, they were frustrated by what they felt was a lack of reliable and clear information about the effects of DES exposure.
  • Most expressed questions and anxiety about their health.
  • Many found their communication with physicians about their DES exposure unsatisfying. They felt that physicians lacked information about the long-term health effects of DES exposure and as a result did not give them accurate information. Furthermore, they felt that physicians were dismissive of their concerns and often gave what they felt to be false reassurances. Consequently, the women developed an enduring distrust of the medical profession.

The results of the study suggest implications for the delivery of health care to DES daughters.

Sources and more information
  • A focus group study of DES daughters: implications for health care providers, Psycho-oncology, NCBI PMID: 11038482, 2000 Sep-Oct.
More DES DiEthylStilbestrol Resources

Have your say ! Share your views