Explaining "unexplained" perinatal loss: experiences of women with antiphospholipid syndrome.
OBJECTIVE
To explore women's experiences of 1 or more perinatal losses associated with antiphospholipid syndrome (APS) and describe their perceptions about losses related to this disorder and its effects on both their outlook and subsequent childbearing.


METHODS
The participants included thirty-eight 18- to 50-year-old women from 5 countries, who were members of general and APS online perinatal support groups and had 1 or more perinatal losses associated with APS.


METHODS
The respondents were recruited from various online perinatal loss support groups, using convenience and snowball sampling. Semistructured e-mail interviews were conducted, using the qualitative technique of phenomenology.


RESULTS
Two major themes that emerged from the data are existence in bewilderment and persistence in the quest for knowledge and information. The first theme has 2 subthemes: delayed diagnosis and living in uncertainty.


CONCLUSIONS
Women with APS and related perinatal losses perceive the need to persist in seeking scientific knowledge because the information they receive from healthcare providers is limited and unclear. Evidence-based medical and nursing education about antiphospholipid antibody syndrome is necessary to improve clinical practice and thereby the perinatal outcome and the ill effects of this condition for women during and after the childbearing period.
Mathew
Susan
S
College of Nursing, Texas Woman's University - Houston, TX, USA. susanthushara@aol.com
Cesario
Sandra
S
Symes
Lene
L
D000022:Abortion, Spontaneous / Q000209:etiology / Q000523:psychology*; D000223:Adaptation, Psychological; D000328:Adult; D016736:Antiphospholipid Syndrome / Q000150:complications / Q000175:diagnosis / Q000523:psychology*; D001294:Attitude to Health; D005260:Female; D006117:Grief; D006301:Health Services Needs and Demand; D006801:Humans; D020407:Internet; D008875:Middle Aged; D015404:Nursing Methodology Research; D010353:Patient Education as Topic; D011247:Pregnancy; D011248:Pregnancy Complications / Q000175:diagnosis / Q000523:psychology*; D012657:Self-Help Groups; D012944:Social Support; D050497:Stillbirth / Q000523:psychology*; D011795:Surveys and Questionnaires; D035501:Uncertainty