GOLD Learning Speakers

The Ehlers-Danlos Syndromes (EDS) are inherited multi-systemic conditions affecting all connective tissues. Those affected perceive a lack of understanding. Hypermobile EDS (hEDS) is the most common subtype, with significant implications for childbearing women, for whom it is more common. This seminar will present and discuss evidence-based maternity care considerations for this unique subgroup of childbearing women, derived from a recent review of the evidence and an international qualitative study. Greater understandings could translate into practical improvements within maternity care, and a reduction in physical trauma and psychological distress for those with hEDS. Participants are invited to actively engage in critical thinking, practical solutions planning and translating this research into real and positive improvements for maternity services.

Hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) are multisystemic connective tissue disorders and present far more common than previously thought. Recent international findings reveal that poor experiences for those childbearing can result in a disengagement from services, trauma, stress, anxiety and an avoidance of future pregnancies. Alternatively, supportive care and listening can make a big difference to the child bearer. Maternity staff observed in this research were sometimes perceived to be panicked when providing care in this context. Ultimately, childbearing with hEDS/HSD is challenging, as connective tissue is affected throughout the body. Drawing from the findings of their recent international research, a team of expert co-creators employed the ‘Define, design, refine’ method originating from the Co-Creating Welfare Project to develop tools to support education in relation to childbearing with hEDS/HSD. This was done via a series of online co-creation webinars. The final tools comprised an infomercial, an i-learn module to be hosted by the Royal College of Midwives and a practical toolkit with images for universal use. Co-creators were generally positive about their experiences in engaging in this particular online co-creative process, which enabled them to participate in a national project more easily and effectively overall.