Explaining unexplained loss: Women's experiences of one or more perinatal losses associated with antiphospholipid syndrome
Perinatal loss or pregnancy loss can be a devastating experience for a woman and her family. When the loss remains unexplained and occurs once or more, it can be life changing. Unexplained perinatal loss is the loss of a pregnancy for which a cause is not identified. Perinatal loss in general, is a well researched area in nursing. However, antiphospholipid syndrome (APS) related perinatal loss is not well understood among health care professionals. Therefore, the purpose of this study was to explore women's experiences of one or more perinatal losses associated with antiphospholipid syndrome.
Two research questions guided this study: (a) What are the perceptions, thoughts, and feelings of women with one or more perinatal losses associated with antiphospholipid syndrome? (b) Do women who have experienced at least one perinatal loss have a different outlook on subsequent childbearing, after receiving a diagnosis of antiphospholipid syndrome?
The research design chosen for this study was qualitative, descriptive phenomenology. The data was collected from online perinatal loss support groups using convenience and snow ball sampling. Semi-structured email interviews of 38 participants provided in-depth description of their experiences of perinatal losses and the related diagnosis of antiphospholipid syndrome. The sample size was determined by data saturation. The trustworthiness of this qualitative research was maintained during data collection, analysis, and interpretation using Lincoln and Guba's criteria.
The data were analyzed using Colaizzi's phenomenological method, and two overarching themes emerged. They were Existence in Bewilderment and Persistence in the Quest for Knowledge and Information. The first major theme had two sub themes. They were Delayed Diagnosis and Living in Uncertainty. Women in this study described their experience as having to exist in a somewhat confused state of mind, mixed with a perplexity of psychosocial emotions. These women had the unique experience of grieving not only the loss of their pregnancies but also the perceived loss of total personal well-being once they were diagnosed with APS. From their description, it was evident that their losses and the diagnosis had great physical, emotional, social, spiritual, and economic impact on their personal well being.