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 and Sally Pezaro
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Gemma Pearce: Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK
Lauren Bell: Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK
Paul Magee: Centre for Future Transport and Cities, Coventry University, Coventry CV1 5FB, UK
Sally Pezaro: Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK

IJERPH, 2023, vol. 20, issue 20, 1-16

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: maternity; obstetrics; midwifery; anaesthetists; physiotherapy; joint hypermobility; co-creation; co-design; co-production; patient and public involvement (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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