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

Gemma Pearce, Lauren Bell, Paul Magee, Sally Pezaro

Coventry City Council

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

67 Downloads (Pure)

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 language	English
Article number	6955
Number of pages	16
Journal	International Journal of Environmental Research and Public Health
Volume	20
Issue number	20
Early online date	21 Oct 2023
DOIs	https://doi.org/10.3390/ijerph20206955 https://doi.org/10.3390/ijerph20206955
Publication status	Published - 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

Access to Document

10.3390/ijerph20206955Licence: CC BY
10.3390/ijerph20206955

PublishedFinal published version, 1.23 MBLicence: CC BY
ijerph-20-06955-v3Final published version, 861 KBLicence: CC BY

Cite this

Pearce, G., Bell, L., Magee, P., & Pezaro, S. (2023). Co-created solutions for perinatal professionals and childbearing needs for people with hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders. International Journal of Environmental Research and Public Health, 20(20), Article 6955. https://doi.org/10.3390/ijerph20206955, https://doi.org/10.3390/ijerph20206955

Co-created solutions for perinatal professionals and childbearing needs for people with hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders. / Pearce, Gemma ; Bell, Lauren ; Magee, Paul et al.
In: International Journal of Environmental Research and Public Health, Vol. 20, No. 20, 6955, 21.10.2023.

Research output: Contribution to journal › Article › peer-review

Pearce, G , Bell, L , Magee, P & Pezaro, S 2023, 'Co-created solutions for perinatal professionals and childbearing needs for people with hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders', International Journal of Environmental Research and Public Health, vol. 20, no. 20, 6955. https://doi.org/10.3390/ijerph20206955, https://doi.org/10.3390/ijerph20206955

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ER -

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

Abstract

Bibliographical note

Funder

Keywords

Access to Document

Other files and links

Fingerprint

Knowledge Mobilisation between patients, maternity care staff, third sector organisations and academia on childbearing with hypermobile Ehlers-Danlos Syndrome

Cite this

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

Abstract

Bibliographical note

Funder

Keywords

Access to Document

Other files and links

Fingerprint

Projects

Knowledge Mobilisation between patients, maternity care staff, third sector organisations and academia on childbearing with hypermobile Ehlers-Danlos Syndrome

Cite this