Abstract

Background: In North America, there are currently no clearly defined standards of care for women with spinal cord injury (SCI) during the perinatal periods of preconception, pregnancy, labour/delivery, and postpartum. Women with SCI and their partners say resources specific to their needs are hard to find. Little evidence-informed research exists to guide clinicians in the care of women with SCI during pregnancy. Objectives: To further explore these gaps in knowledge and practices for perinatal care for women with SCI, a 1-day workshop was held in Vancouver, British Columbia (BC), Canada in November 2013. Methods: Twenty-nine attendees included women with SCI, SCI-community service providers, researchers, and health care providers from maternal/fetal medicine, rehabilitation, anesthesiology, and psychiatry. A pre-meeting online survey of stakeholders elucidated 3 themes: lack of knowledge for both consumers and care providers, gaps in access to services and information, and a need for collaboration throughout the perinatal journey. The workshop addressed issues of care providers' lack of knowledge of nonmedical issues during the perinatal period, physical and attitudinal barriers to access to care for women with SCI, and the need for better collaboration and communication between care providers, the latter potentially initiated by providing information to care providers through the women with SCI themselves. Results: Content experts attending the workshop collectively made recommendations for knowledge generation and research priorities, clinical application priorities, and the need for policy and guideline development in this field. Conclusion: Two information sources for women have since been developed and are available online.

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