Perceived needs and experiences with healthcare services of women with spinal cord injury during pregnancy and childbirth — a qualitative content analysis of focus groups and individual interviews

BACKGROUND: Women after a spinal cord injury (SCI), who decide to get pregnant and to become mothers, have special health care service needs. This study aims to identify the perceived service needs of woman with SCI during pregnancy and childbirth in Switzerland and to reconstruct their experiences of healthcare service utilization based on their accounts. METHODS: A qualitative content analysis based on focus groups and individual interviews was conducted. 17 mothers with SCI who had given birth following SCI within the past 15 years participated. The data were transcribed verbatim before content analyses were carried out. Primary data was collected from August 2012 to September 2013 at the Swiss Paraplegic Research Centre, Nottwil; the University of Lausanne and at the homes of the participants. RESULTS: Mothers reported a broad spectrum of medical needs, including the need for access to improved integrated care. They also reported difficulties finding providers with knowledge of both paraplegiology (i.e. spinal cord medicine) and gynaecology. Mothers preferred using local health care services and regular birth hospitals, and reported receiving no additional benefit from the services of specialised SCI centres during pregnancy. A pre-existing provider-patient relationship was helpful for optimizing care processes. CONCLUSION: This study showed that pregnant women with SCI have various perceived healthcare needs and health care service use. Effective programs to improve these women’s access to integrated care during pregnancy and childbirth and policies requiring the provision of specific pregnancy information and pre-birth services are necessary.