Co-created solutions for perinatal professionals and childbearing needs for people with hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders

Individuals living with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) have reported feeling discredited and unsupported by healthcare professionals. However, the level of knowledge about hEDS/HSD among maternity staff remains unknown. Informed by patient and public involvement, this research aimed to investigate maternity staff’s knowledge and confidence in supporting people with hEDS/HSD, examine people with hEDS/HSD’s experiences of perinatal care, and co-create tools to help maternity staff support people childbearing with hEDS/HSD. Two online mixed-methods international surveys were completed by childbearing people with hEDS/HSD (N = 955) and maternity staff (N = 307). This was followed by the co-creation of three tools with 17 co-creators and a design team. Two main qualitative themes were identified through thematic analysis: (1) a need for recognition of hEDS/HSD in perinatal care and (2) the delivery of appropriate individualised perinatal care. Quantitatively, people with hEDS/HSD perceived maternity professionals to have a low level of knowledge about the conditions. Respectively, maternity staff reported low levels of confidence in supporting people with hEDS/HSD. The co-created tools provide applicable outputs for both education and practice and include an i-learn module hosted by the Royal College of Midwives, a tool for perinatal records, and infomercials.