The Experiences and Challenges of Pregnant Women Coping with Thrombophilia.

Background and Objectives: Pregnancy may be adversely affected by thrombophilia via venous thromboembolism-induced morbidity and mortality or via gestational vascular complications such as fetal loss or preeclampsia. Women with thrombophilia are often prescribed heparin for daily self-injection during pregnancy. The purpose of this study was to explore the unique experiences, challenges, and coping strategies of pregnant women with thrombophilia who are on daily heparin injections.

Study Methods: A qualitative, descriptive approach with semi-structured, individual interviews was used. Women with thrombophilia followed at the Thrombosis Clinic of a large university affiliated hospital in Quebec, Canada who were prescribed heparin during pregnancy and who were pregnant at the time of the study or within the last 12 months were eligible. Interviews lasting 45 minutes performed by a trained graduate nursing student were conducted with each participant. Thematic analysis was used throughout the processes of interviewing, transcribing verbatim, and categorizing the data.

Results: Nine women (age range 30–36) participated in the study. Four participants had antiphospholipid antibody syndrome, three had the lupus anticoagulant, one had Factor V Leiden and one had Protein S deficiency. For all participants, the diagnosis of thrombophilia was made via blood testing after referral to Clinic for evaluation of multiple early pregnancy losses, late pregnancy losses, or other serious pregnancy complications. None had previous venous thromboembolic events. Four main themes were identified based on analysis of the interview transcripts:

1. the emotional impact of diagnosis and treatment of thrombophilia, which was influenced by past pregnancy experiences as well as the experiences of others;

2. the need for professional support, particularly concerning medical decision-making regarding whether to choose treatment in certain cases, but also with regards to information, injection technique, and emotional needs;

3. uncertainty vis-à-vis treatment outcomes; and

4. successful coping strategies such as taking control and maintaining perspective.

Conclusions: This qualitative research shows that, during pregnancy, coping with thrombophilia and daily heparin injections can be a stressful experience. However, the ensuing challenges are perceived as manageable discomforts in light of the outcome of a healthy baby. Implications for health professionals include providing written information to complement explanations given during appointments, standardization of self-injection teaching, establishing peer networks among women who have had similar experiences, and follow-up with a nurse, who can provide ongoing support around coping with uncertainty and the stress of self-injection, revisit the information given, and provide emotional support and referral, if needed. Greater standardization of physician decision making regarding the need for thrombophilia screening and anticoagulation may also be beneficial, since differences in physicians’ approaches across institutions was reported by participants as a source of stress. Nurses, in collaboration with physicians, are in a key position to enhance the quality of care to this population. Further research should evaluate a standardized program based on interventions suggested by this study.