Evidence map›Paper›PMID 39675827›Full record

ArticleBMJ open2024

Participatory longitudinal qualitative interview study to understand Autistic gynaecological and obstetric health: the Autism from menstruation to menopause study protocol.

Aimee Grant, Gemma L Williams, Harriet Axbey, Abigail Wilkins, Ellen Firth, Hazel Lim, Helen Cave, Kathryn Williams, Kay Ribbons, Madeleine Sinfield and 7 more

Abstract read
In one paragraph

Article in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Aimee GrantSwansea University, Swansea, UK aimee.grant@swansea.ac.uk.ORCID http://orcid.org/0000-0001-7205-5869
Gemma L WilliamsSwansea University, Swansea, UK.
Harriet AxbeySwansea University, Swansea, UK.
Abigail WilkinsSwansea University, Swansea, UK.
Ellen FirthSwansea University, Swansea, UK.
Hazel LimSwansea University, Swansea, UK.
Helen CaveSwansea University, Swansea, UK.
Kathryn WilliamsSwansea University, Swansea, UK.
Kay RibbonsSwansea University, Swansea, UK.
Madeleine SinfieldSwansea University, Swansea, UK.
Monique CraineSwansea University, Swansea, UK.
Selena CaemawrSwansea University, Swansea, UK.
Willow HollowaySwansea University, Swansea, UK.
Amy BrownSwansea University, Swansea, UK.
Christina NicolaidisPortland State University, Portland, Oregon, USA.
Helen KaraWe Research It Ltd, Uttoxeter, Staffordshire, UK.
Rebecca EllisSwansea University, Swansea, UK.

Funding

Wellcome Trust
6 · The paper itself

Abstract

introductionAutism is a lifelong minority neurotype present from birth. There is a dearth of credible evidence to suggest gender variation in Autism prevalence, despite historical under-diagnosis of women. Autistic people Assigned Female At Birth (AFAB) have worse physical and mental health compared with non-Autistic peers. To date, the reproductive health experiences of Autistic AFAB people have been under-investigated. METHODS AND ANALYSIS: This study aims to co-develop a quality improvement intervention to improve the reproductive health of Autistic people. The study uses Community Partnered Participatory Research (an approach similar to Community-Based Participatory Research), largely through a Community Council that co-governs the study. To understand reproductive health needs, a longitudinal qualitative investigation using creative methods will be undertaken with 100 Autistic AFAB people with 10 waves of data collection over 5 years (interview n=500-1000). Participants will be purposively selected to include harder-to-reach members of the Autistic community, including those who are non-speaking or semi-speaking, have a learning disability and those from marginalised ethnicities. Data will be analysed thematically with Community Council involvement. Intervention development will be undertaken from 2029 onwards. ETHICS AND DISSEMINATION: We are an Autistic-led team that adopts a social model of disability. However, this study raises ethical issues relating to sensitive topics and marginalised populations. Accordingly, we have robust procedures in place to assess capacity to ensure informed consent and to allow participants to take part without opting into data sharing. Ethical approval has been awarded by the Swansea University School of Health and Social Care Research Ethics Committee. We will publish our findings as open access articles in peer-reviewed journals.

Indexed as

Autistic DisorderQualitative ResearchAdultCommunity-Based Participatory ResearchFemaleHumansLongitudinal StudiesMenopauseMenstruationPregnancyReproductive HealthResearch DesignCommunity-Based Participatory ResearchDisabled PersonsGYNAECOLOGYHealth Services AccessibilityOBSTETRICSQUALITATIVE RESEARCH

Identifiers

PMID39675827
PMCPMC11647321

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.