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

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Abstract

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.
Original languageEnglish
Article number6955
Number of pages16
JournalInternational Journal of Environmental Research and Public Health
Volume20
Issue number20
Early online date21 Oct 2023
DOIs
Publication statusE-pub ahead of print - 21 Oct 2023

Bibliographical note

© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).

Funder

This research was funded by the Coventry University “Enterprise, Exchange, and Engagement” internal pump priming grant, with additional funding from the Ehlers-Danlos Society to further refine and finalise the infomercial.

Keywords

  • maternity
  • obstetrics
  • midwifery
  • anaesthetists
  • physiotherapy
  • joint hypermobility
  • co-creation
  • co-design
  • co-production
  • patient and public involvement

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