Delivering care under uncertainty: Swiss providers’ experiences in caring for women with spinal cord injury during pregnancy and childbirth – an expert interview study

BACKGROUND: When different health problems such as pregnancy and spinal cord injury (SCI) occur together, providing adequate care becomes even more challenging. Women with SCI may encounter a variety of specific problems and symptoms during pregnancy and childbirth, including urinary tract infections, pressure ulcers, constipation, autonomic dysreflexia, and preterm labour. Therefore, expertise from different medical specialties, especially spinal cord medicine and gynaecology are required. What is totally normal for experts of one specialty could cause a problem for experts from another specialty. Therefore, this study aimed to reconstruct the perceptions and experiences of healthcare providers in Switzerland in caring for women with SCI during pregnancy and childbirth. METHODS: The perception and experience of healthcare professionals toward providing care for women with SCI during pregnancy and labour were elicited using qualitative expert interviews and analysed using grounded theory techniques. Fifteen health professionals were interviewed, including gynaecologists (n = 4), midwives (n = 3), physical medicine and rehabilitation professionals (n = 4), urologists (n = 3), and a peer counselor (n = 1). RESULTS: Care delivery experiences of health professionals could be described as a forced reaction to decision making under uncertainty. However, health professionals seemed to express three different attitudes while handling the situation: (i) protective concerned attitude, (ii) ‘no big deal’ attitude, or (iii) precautionary attitude. The applied strategies were influenced by the conditions of the healthcare system, policies in place, and health professionals’ behaviours. Consequently, health professionals faced with uncertainty felt like actors in a fragmented treatment process and called for interdisciplinary collaborations. CONCLUSIONS: Our findings highlight the diversity of perspectives among different healthcare professionals with respect to the approach to care and delivery services for pregnant women with SCI. A need for more specific services, information, guidance, and guidelines for health professionals caring for woman with SCI during pregnancy and childbirth was identified. We strongly recommend further research on the development of integrated care concepts as well as clinical studies for establishing a more profound knowledge base. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12884-016-0976-y) contains supplementary material, which is available to authorized users.