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“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 Orcid Logo, Catrin Griffiths Orcid Logo, Kathryn Williams, Amy Brown Orcid Logo

Midwifery, Start page: 104266

Swansea University Authors: Aimee Grant Orcid Logo, Catrin Griffiths Orcid Logo, Amy Brown Orcid Logo

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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�...

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Published in: Midwifery
ISSN: 0266-6138 1532-3099
Published: Elsevier BV 2024
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URI: https://cronfa.swan.ac.uk/Record/cronfa68563
first_indexed 2025-01-09T20:33:49Z
last_indexed 2025-01-09T20:33:49Z
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spelling 2024-12-13T09:21:20.1502875 v2 68563 2024-12-13 “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 6a1ce3bc54c692c804e858b70d2e4bd2 0000-0001-7205-5869 Aimee Grant Aimee Grant true false 2d49e9db71928b3c4e564063c2b8b06e 0000-0002-6581-0536 Catrin Griffiths Catrin Griffiths true false 37aea6965461cb0510473d109411a0c3 0000-0002-0438-0157 Amy Brown Amy Brown true false 2024-12-13 HSOC 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. Journal Article Midwifery 0 104266 Elsevier BV 0266-6138 1532-3099 Pregnancy loss, perinatal loss, Autism, Healthcare, Autistic adults, Pregnancy 12 12 2024 2024-12-12 10.1016/j.midw.2024.104266 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University SU Library paid the OA fee (TA Institutional Deal) The Swansea University Accelerate Healthcare Technology Centre funded the research. 2024-12-13T09:21:20.1502875 2024-12-13T09:14:59.3461469 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Aimee Grant 0000-0001-7205-5869 1 Catrin Griffiths 0000-0002-6581-0536 2 Kathryn Williams 3 Amy Brown 0000-0002-0438-0157 4
title “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
spellingShingle “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
Amy Brown
title_short “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
title_full “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
title_fullStr “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
title_full_unstemmed “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
title_sort “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
author_id_str_mv 6a1ce3bc54c692c804e858b70d2e4bd2
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author_id_fullname_str_mv 6a1ce3bc54c692c804e858b70d2e4bd2_***_Aimee Grant
2d49e9db71928b3c4e564063c2b8b06e_***_Catrin Griffiths
37aea6965461cb0510473d109411a0c3_***_Amy Brown
author Aimee Grant
Catrin Griffiths
Amy Brown
author2 Aimee Grant
Catrin Griffiths
Kathryn Williams
Amy Brown
format Journal article
container_title Midwifery
container_volume 0
container_start_page 104266
publishDate 2024
institution Swansea University
issn 0266-6138
1532-3099
doi_str_mv 10.1016/j.midw.2024.104266
publisher Elsevier BV
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
document_store_str 0
active_str 0
description 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.
published_date 2024-12-12T08:31:14Z
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