Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Gemma Pearce; Lauren Bell; Paul Magee; Sally Pezaro

doi:10.3390/ijerph20206955

Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Int J Environ Res Public Health. 2023 Oct 21;20(20):6955. doi: 10.3390/ijerph20206955.

Authors

Gemma Pearce¹, Lauren Bell^{1

2}, Paul Magee³, Sally Pezaro¹

Affiliations

¹ Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK.
² Coventry City Council, Coventry CV1 2GN, UK.
³ Centre for Future Transport and Cities, Coventry University, Coventry CV1 5FB, UK.

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.

Keywords: anaesthetists; co-creation; co-design; co-production; joint hypermobility; maternity; midwifery; obstetrics; patient and public involvement; physiotherapy.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Ehlers-Danlos Syndrome*
Female
Humans
Joint Instability*
Pregnancy
Surveys and Questionnaires

Supplementary concepts

Ehlers-Danlos syndrome type 3

Grants and funding

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.