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. SUBJECTS: 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. CONCLUSION: 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.
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. SUBJECTS: 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. CONCLUSION: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.
Authors: Mirthe J Klein Haneveld; Caro H C Lemmen; Tammo E Brunekreef; Marc Bijl; A J Gerard Jansen; Karina de Leeuw; Julia Spierings; Maarten Limper Journal: Rheumatol Adv Pract Date: 2020-06-12