Journal article 6 views
“I felt belittled and ridiculed for being in pain”: an online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom
Aimee Grant 
,
Catrin Griffiths ,
Kathryn Williams,
Amy Brown
,
Catrin Griffiths ,
Kathryn Williams,
Amy Brown
Midwifery, Start page: 104266
Swansea University Authors:
Aimee Grant , Catrin Griffiths , Amy Brown
Full text not available from this repository: check for access using links below.
DOI (Published version): 10.1016/j.midw.2024.104266
Abstract
Background: Around 3% of people are Autistic; women may be under-diagnosed. Autistic people report lack of staff understanding, stigma and environmental barriers to using midwifery services. It is not known if these issues are present in perinatal loss services. Aim: To understand Autistic people�...
| Published in: | Midwifery |
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| ISSN: | 0266-6138 1532-3099 |
| Published: |
Elsevier BV
2024
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| Online Access: |
Check full text
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| URI: | https://cronfa.swan.ac.uk/Record/cronfa68563 |
| Abstract: |
Background: Around 3% of people are Autistic; women may be under-diagnosed. Autistic people report lack of staff understanding, stigma and environmental barriers to using midwifery services. It is not known if these issues are present in perinatal loss services. Aim: To understand Autistic people's experiences of care for perinatal loss. Methods: An online survey for Autistic adults in the United Kingdom who had been pregnant, using closed and open questions. Data were analysed descriptively, using Kruskal-Wallis tests and thematically. Results: The majority of losses appeared to be early in pregnancy. Among 67 participants, over half (58.2 %, n=39) always sought healthcare during a perinatal loss, but 28.4% (n=19) never accessed care. Of those who received healthcare (n=48; 71.6%), over half (n=27; 56.3%) did not know they were Autistic at the time, and just one person told health professionals that they were Autistic. Four participants identified instances where staff were supportive or kind, but the majority of experiences were negative, with reported issues focused on communication, the way support was provided, inadequate pain relief and the hospital environment. We generated one overarching theme: “trauma”. Conclusion: Autistic people from the UK identified significant Disability-related access issues with perinatal loss care in addition to issues reported by a general population. UK Perinatal loss services need urgent investment to be able to provide person-centred care to all. Staff supporting perinatal loss should receive neurodiversity-affirming Autism training and be aware that many Autistic people experiencing perinatal loss will not have or share a diagnosis. |
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| Keywords: |
Pregnancy loss, perinatal loss, Autism, Healthcare, Autistic adults, Pregnancy |
| College: |
Faculty of Medicine, Health and Life Sciences |
| Funders: |
The Swansea University Accelerate Healthcare Technology Centre funded the research. |
| Start Page: |
104266 |