Perinatal Mental Health Research: Research priorities from a neurodiverse sample in the United Kingdom

Perinatal Mental Health Research: Research priorities from a neurodiverse sample in the United Kingdom | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Short Report Perinatal Mental Health Research: Research priorities from a neurodiverse sample in the United Kingdom Alexandra Lautarescu, Siofra Heraty, Chloe Johnson, Amber Ruigrok, and 9 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8336902/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract A co-designed mixed-methods survey was conducted as part of the [STUDY NAME REDACTED FOR DOUBLE-ANONYMOUS PEER REVIEW] study. 709 participants in the United Kingdom quantitatively rated and ranked research topics within perinatal mental health, with 253 also providing qualitative data. The top research priorities across neurotypes were (1) interventions and (2) diagnosis for perinatal mental health problems for birthing people and (3) how these impact parent-infant relationships. Qualitative data revealed additional topics of importance including healthcare experiences, trauma, and neurodiversity. perinatal mental health participatory research research priorities neurodiversity mixed-methods 1. INTRODUCTION Mental health difficulties impact over 25% of those who give birth (Office of Health Improvement & Disparities 2025, Smythe et al. 2022 ), with long-standing negative effects on the wellbeing of parent(s) and children (Howard and Khalifeh 2020 ). Neurodivergent people (e.g., autism, attention deficit hyperactivity disorder, ADHD; including those who self-identify) are at increased risk (Hampton et al. 2022 , Murray et al. 2022 ). In the United Kingdom (UK), recent concerns were raised about the state of maternity services and the resulting psychological impact (APPG, 2024). In this context, it is essential to understand perinatal mental health research priorities of women and birthing people, as well as whether these differ based on neurotype. While some have reported on the research priorities of neurodivergent people (Pellicano et al. 2013), and separately on perinatal research priorities in the general population (Mossinger et al., 2023 ), to our knowledge, this is the first community-based participatory priority-setting exercise within perinatal mental health in the UK to include a neurodiverse sample. 2. MATERIALS AND METHODS 2.1. The [STUDY NAME REDACTED] study The [STUDY NAME REDACTED]([ACRONYM REDACTED], [OSF LINK REDACTED] study aims to better understand perinatal mental health risk and resilience factors in people with different neurotypes. [STUDY NAME REDACTED] is co-produced by a diverse team of multi-disciplinary researchers and lived experience experts, with community members paid for their time following NIHR guidelines. The survey [OSF LINK REDACTED; DOCUMENT INCLUDED AS SUPPLEMENT], was iteratively developed through regular focus groups, email communication, and collaborative online documents. Ethical approval was obtained from [UNIVERSITY NAME REDACTED] Research Ethics Committee (HR/DP-22/23-36808, HR/DP-22/23-38899). All participants provided written informed consent. Qualitative data was included only for participants who have provided consent for the publication of anonymous quotations. 2.2. Recruitment Participants were eligible if they were aged ≥ 16 years, lived in the UK, and had recent experience of pregnancy (i.e., were currently pregnant and/or had been pregnant in the last 5 years). Data collection took place August 2023 to January 2024. We used a convenience sample method intended to reach a variety of viewpoints and to over-sample for neurodivergence and history of poor mental health. Online flyers were disseminated via social media (e.g., Facebook, Instagram, Twitter/X), organisations (e.g., Maternity Autism Research Group, ADHD Adult UK, Dyspraxia UK, PACT Southwark, Best Beginnings, Birthing Trauma Association), forums (e.g., Mumsnet, Netmums), and through snowball sampling (i.e., asking participants to share the survey within their networks). Printed flyers were posted in public areas (e.g., notice boards, community centres, libraries, cafes, university buildings). The survey was hosted on the Qualtrics online platform and took approximately 20 minutes to complete. As a thank you for their contributions, participants were entered into a prize draw with a chance to win an Amazon voucher (£10-£100). Bot responses were identified and excluded using a comprehensive strategy [OSF LINK REDACTED; DOCUMENT INCLUDED AS SUPPLEMENT], 2.3. Survey This analysis is based on a subset of questions from the [STUDY NAME REDACTED] survey. Participants were shown a list of 15 research topics focused around perinatal mental health and co-developed by the [STUDY NAME REDACTED] team based on the World Health Organisation Action Plan 2013–2030 (see Supplement Table S1 ). Participants were asked to select “the top 5 topics that you think are most important for researchers to focus on”. For these 5 choices, participants were then asked to “rank these topics in the order of importance to you, with 1 being most important”. Lastly, participants were provided with an open-text response box about whether there were “any other topics or questions that you think researchers should focus on”. Demographics were collected, including diagnoses of neurodevelopmental (NDC) and mental health conditions. 2.4. Statistical analysis Quantitative data was cleaned and analysed using R (version 4.3.2) and the full code is available at [GITHUB LINK REDACTED; DOCUMENT INCLUDED AS SUPPLEMENT]. For reporting purposes, participants were divided into categories decided with lived experience input: Neurodivergent (“Yes, I have been diagnosed with this”, “Yes/Likely yes, I have never received a diagnosis but this applies to me/I self-identify with this”), Not Neurodivergent (“No, I have never been diagnosed with this), and Maybe Neurodivergent (“Maybe, I think this may apply to me but I am not sure”). Additional analyses further subdivided these categories based on participant neurotype (autism, ADHD, other conditions such as dyspraxia and dyslexia, see Supplement). Qualitative data from the open-ended question were analysed following an approach based on Krippendorff’s content analysis (Krippendorff 1989 ). Answers were read by two researchers independently [INITIALS REDACTED] to exclude non-valid entries (e.g., “do not want to answer”), achieving consensus on the dataset to be analyzed. They independently identified preliminary codes, which were compared and refined through discussion to develop a final codebook. [INITIALS REDACTED] independently sorted the coding units (sub-sentences/excerpts) into the agreed codes and achieved consensus through a series of discussions. Codes were discussed with another researcher [INITIALS REDACTED] for agreement purposes. Frequency codes were calculated. 3. RESULTS 3.1. Quantitative data 709 participants were included (median age 34 years, range 21–53). Participants were oversampled for neurodivergence, including autism (between 12.1% “yes/likely yes” and 23% also including “maybe”), ADHD (14.7–27.2%), and other neurodevelopmental conditions (11.6–14.8%), and for history of poor mental health, including depression (52.5–60.8%), anxiety (59.8–71.5%), and other mental health conditions (21.4–26.8%). Many participants had several diagnoses and/or intersectional identities. Most participants identified as women (96.9%), heterosexual (82.5%), white (90.8%), were university educated (82.2%), and in a relationship (95.8%). 18.9% of participants were pregnant at the time of completing the survey and the remainder had been pregnant in the previous 5 years. 32% participants had been pregnant during COVID-19 pandemic lockdowns. In the whole sample and the neurodivergent (NDC) subsample, the top research priorities identified by participants included interventions and diagnoses for women and birthing people, as well as parent-infant relationships (see Table 1 ). The bottom research priorities included health outcomes for partners and social/economic outcomes of poor perinatal mental health. While there are some differences between the whole sample and neurodivergent subsample in the order of priority scores, these differences are minor (See Table 1 and Table S2 for reporting by neurodivergence type). 3.2. Qualitative data Qualitative data included n = 253 participants, as n = 3 participants did not consent to their qualitative data being used and n = 453 participants did not provide a (valid) response to this question. A summary of the resulting themes and corresponding quotes is presented in Table 2 , with reporting split by neurotype. Despite participants being asked to list “any other topics or questions …”, many wrote about topics already in the list provided, adding examples of research questions (e.g., for “prevalence” - “The prevalence of mental health struggles and the specific struggles of autistic or ADHD birthing people”), suggesting specific sub-topics (e.g., “Family/friend support of the pregnant person” as a protective factor), or adding additional detail regarding the importance of a topic (e.g., “The hardest and most traumatic part for me was my experience of the postnatal ward - it would be useful to include this in your work”, as environmental risk). To capture this nuance, some of the existing topics were subdivided into separate codes (Table 2 Section A. Existing themes). Key additional themes (Table 2 Section B) emerging across neurotypes included healthcare experiences, perinatal trauma, birth experiences, and socio-economic circumstances. Neurodivergent participants highlighted the importance of researching neurodivergence, including specific experiences (e.g., “Does autistic meltdown in pregnancy affect baby”), associations between neurodiversity and physical health (e.g., “Any link to hyperemesis and neurodiversity”) or differences in how neurodivergent people are treated in perinatal settings (e.g., “I felt that the process is tailored to neurotypical people and left me feeling anxious because I felt there was a lot of stuff I was expected to know / do without being told”). Some participants highlighted the lack of research into perinatal mental health in neurodivergent women, with focus often being on infant outcomes (“Anything I tried to find out about only led me to things about ‘how to prevent autism during pregnancy’”) (See Table 2 and Supplementary Table S3). 4. DISCUSSION This is the first study reporting on perinatal mental health research priorities of neurodiverse people. While many neurodivergent people advocated for more neurodiversity-focused and inclusive research, others identified priorities that mirrored those of neurotypical participants. Across neurotypes, participants emphasized the need for research into (1) effective interventions and support for birthing people experiencing poor perinatal mental health, and (2) improved diagnosis of perinatal mental health conditions. These priorities align with calls for better identification and management of maternal mental disorders (Howard and Khalifeh 2020 ) and with evidence of complex, multilevel barriers to accessing support in the UK (Smith et al. 2019 ). Undiagnosed and/or untreated perinatal mental health problems can have long term adverse impacts on women/birthing people, as well as on their child(ren) (Rogers et al., 2020 ). Participants in our study highlighted the need for more research into the impact of poor perinatal mental health on (3) parent-infant relationships and health outcomes of both (4) women and (5) their children. Further, qualitative data emphasized the need to understand how birth experiences and healthcare provision can function as either risk or protective factors for perinatal mental health, often echoing findings from recent reports on birth trauma (APPG, 2024). To ensure that perinatal research and services better reflect the needs of all families, it is imperative that further research is conducted including more demographically diverse samples (Miller et al., 2024 ) and a neurodiversity-affirmative framework (Heraty et al., 2023 ). Declarations Author Contribution All authors made substantial contributions to the work presented in this manuscript, as follows: conceptualisation (AL, SH, AR, EE, TB, JS, VR, HS, JL, AJ, ALZ, DMS), data curation (AL, SH, CJ), formal analysis (AL, SH, CJ, DMS), funding acquisition (AL), investigation (AL, SH, AR, EE, TB, JS, VR, HS, SM, DMS, CJ), methodology (AL, SH, DMS), project administration (AL), supervision (AL), writing-original draft (AL), writing – review and editing (AL, SH, CJ, AR, EE, TB, JS, VR, HS, JL, AJ, SM, ALZ, DMS). All authors approved the version to be published and agree to be accountable for all aspects of the work, in line with ICMJE guidelines. Acknowledgement We would like to acknowledge the contributions of our participants, without whom, this work would not have been possible. We also want to acknowledge the contributions of other WANDA Community lived experience experts who did not want to be named as authors. Finally, we would like to thank our funders and the charities and organisations who have helped distribute the survey link, particularly: Birthing Trauma Association, Maternity Autism Research Group, ADHD Adult UK, Dyspraxia UK, PACT Southwark, and Best Beginnings. This study was funded by the King’s College London’s Public Engagement Small Grant Scheme (made possible by Research England and the King’s College London Research Talent department) and the King’s College London Institute of Psychiatry, Psychology, and Neuroscience (IoPPN) “Early Career Researcher Award”; both of these grants were awarded to Dr Alexandra Lautarescu Data Availability The study survey and analysis code for the quantitative analysis are provided in full as OSF and GitHub links. The qualitative data is shared in full as part of the Appendix, for all participants who have given consent for this. We do not have participant consent to share any of the quantitative data at participant level. References APPG: All-Party Parliamentary Group on Birth Trauma (2024) Listen to Mums: Ending the Postcode Lottery on Perinatal Care Hampton S, Allison C, Aydin E, Baron-Cohen S, Holt R (2022) Autistic mothers’ perinatal well-being and parenting styles. Autism 26(7):1805–1820 Heraty S, Lautarescu A, Belton D, Boyle A, Cirrincione P, Doherty M, Douglas S, Plas JR, Van Den Bosch K, Violland P, Tercon J (2023) Bridge-building between communities: Imagining the future of biomedical autism research. Cell 186(18):3747–3752 Howard LM, Khalifeh H (2020) Perinatal mental health: a review of progress and challenges. World psychiatry 19(3):313–327 Krippendorff K (1989) Content Analysis: An introduction to its methodology. Sage Miller ML, Dupree J, Monette MA, Lau EK, Peipert A (2024) Health equity and perinatal mental health. Curr psychiatry Rep 26(9):460–469 Mossinger C, Manerkar K, Crowther CA, Harding JE, Groom KM (2023) Research priorities for maternal and perinatal health clinical trials and methods used to identify them: A systematic review. Eur J Obstet Gynecol Reproductive Biology 280:120–131 Murray AL, Taut D, Baban A, Hemady CL, Walker S, Osafo J, Sikander S, Tomlinson M, Toit SD, Marlow M, Ward CL (2022) Associations between ADHD symptoms and maternal and birth outcomes: An exploratory analysis in a multi-country cohort of expectant mothers. J Atten Disord 26(14):1882–1894 Pellicano L, Dinsmore A, Charman T (2014) What should autism research focus on? Community views and priorities from the United Kingdom. Autism 18(7):756–770 Rogers A, Obst S, Teague SJ, Rossen L, Spry EA, Macdonald JA, Sunderland M, Olsson CA, Youssef G, Hutchinson D (2020) Association between maternal perinatal depression and anxiety and child and adolescent development: a meta-analysis. JAMA Pediatr 174(11):1082–1092 Smith MS, Lawrence V, Sadler E, Easter A (2019) Barriers to accessing mental health services for women with perinatal mental illness: systematic review and meta-synthesis of qualitative studies in the UK. BMJ Open 9(1):e024803 Smythe KL, Petersen I, Schartau P (2022) Prevalence of perinatal depression and anxiety in both parents: a systematic review and meta-analysis. JAMA Netw Open 5(6):e2218969 Tables Tables 1 and 2 are available in the Supplementary Files section. Additional Declarations No competing interests reported. Supplementary Files Supplement111225.docx Tables.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8336902","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Short Report","associatedPublications":[],"authors":[{"id":563260420,"identity":"334d3e59-4957-4d57-9faa-846d8c44cb69","order_by":0,"name":"Alexandra Lautarescu","email":"data:image/png;base64,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","orcid":"","institution":"King's College London","correspondingAuthor":true,"prefix":"","firstName":"Alexandra","middleName":"","lastName":"Lautarescu","suffix":""},{"id":563260422,"identity":"e3edd36f-2d8a-4b3a-8ddd-00dffadd5184","order_by":1,"name":"Siofra Heraty","email":"","orcid":"","institution":"Bloomfield Hospital","correspondingAuthor":false,"prefix":"","firstName":"Siofra","middleName":"","lastName":"Heraty","suffix":""},{"id":563260423,"identity":"9263fda3-f002-434b-a99e-407df422e7e7","order_by":2,"name":"Chloe Johnson","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Chloe","middleName":"","lastName":"Johnson","suffix":""},{"id":563260427,"identity":"ed4da055-8670-4c20-aab8-ec42f3d8b75b","order_by":3,"name":"Amber Ruigrok","email":"","orcid":"","institution":"University of Manchester","correspondingAuthor":false,"prefix":"","firstName":"Amber","middleName":"","lastName":"Ruigrok","suffix":""},{"id":563260429,"identity":"e4b56d8a-8d96-4694-ae69-21a909f8f512","order_by":4,"name":"Eliza Eaton","email":"","orcid":"","institution":"Autism Research Centre","correspondingAuthor":false,"prefix":"","firstName":"Eliza","middleName":"","lastName":"Eaton","suffix":""},{"id":563260430,"identity":"c6725755-99e0-47d1-bb16-5a8d6e0e6aab","order_by":5,"name":"Tessel Bazelmans","email":"","orcid":"","institution":"Birkbeck, University of London","correspondingAuthor":false,"prefix":"","firstName":"Tessel","middleName":"","lastName":"Bazelmans","suffix":""},{"id":563260433,"identity":"d8fc156a-51a6-4d2c-a43b-eade189ec81c","order_by":6,"name":"Julie Sigurdardottir","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Julie","middleName":"","lastName":"Sigurdardottir","suffix":""},{"id":563260439,"identity":"3e00f2a6-e85d-45a8-8eef-4d483c0a4b15","order_by":7,"name":"Victoria Ratti","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Victoria","middleName":"","lastName":"Ratti","suffix":""},{"id":563260441,"identity":"9d1b5e73-1abb-49b4-b670-6f25f6b24e2b","order_by":8,"name":"Holly Stone","email":"","orcid":"","institution":"WANDA Community Focus Group","correspondingAuthor":false,"prefix":"","firstName":"Holly","middleName":"","lastName":"Stone","suffix":""},{"id":563260443,"identity":"f3209958-af90-4aac-a1d7-4ea00365592b","order_by":9,"name":"Ayesha Javed","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Ayesha","middleName":"","lastName":"Javed","suffix":""},{"id":563260445,"identity":"e4b79370-cd0f-4d27-8d46-28cc3c6af44b","order_by":10,"name":"Shivali Mahtani","email":"","orcid":"","institution":"King's College London","correspondingAuthor":false,"prefix":"","firstName":"Shivali","middleName":"","lastName":"Mahtani","suffix":""},{"id":563260446,"identity":"a7fe6615-e8f9-481b-97b4-0c1bfb8c1dfa","order_by":11,"name":"Alex Lau-Zhu","email":"","orcid":"","institution":"University of Oxford","correspondingAuthor":false,"prefix":"","firstName":"Alex","middleName":"","lastName":"Lau-Zhu","suffix":""},{"id":563260448,"identity":"1b701f5a-73eb-402c-8262-5104ca9de5c1","order_by":12,"name":"Debbie M. Smith","email":"","orcid":"","institution":"University of Manchester","correspondingAuthor":false,"prefix":"","firstName":"Debbie","middleName":"M.","lastName":"Smith","suffix":""}],"badges":[],"createdAt":"2025-12-11 12:53:24","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8336902/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8336902/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":103751048,"identity":"24f00d87-341b-4a37-b584-fd4754dc7864","added_by":"auto","created_at":"2026-03-02 13:00:25","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":397865,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8336902/v1/788b1dfc-3754-477a-9875-0118b84206f4.pdf"},{"id":103751047,"identity":"d93e5685-a7f4-4bb1-a861-eb76bc8ccc7b","added_by":"auto","created_at":"2026-03-02 13:00:21","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":90414,"visible":true,"origin":"","legend":"","description":"","filename":"Supplement111225.docx","url":"https://assets-eu.researchsquare.com/files/rs-8336902/v1/114a40783e4df74af2f4cc98.docx"},{"id":103751046,"identity":"3159a4fd-d8a4-4308-a032-05d16b2c9597","added_by":"auto","created_at":"2026-03-02 13:00:21","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":31282,"visible":true,"origin":"","legend":"","description":"","filename":"Tables.docx","url":"https://assets-eu.researchsquare.com/files/rs-8336902/v1/7d9472c1fd480e81682db82b.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Perinatal Mental Health Research: Research priorities from a neurodiverse sample in the United Kingdom","fulltext":[{"header":"1. INTRODUCTION","content":"\u003cp\u003eMental health difficulties impact over 25% of those who give birth (Office of Health Improvement \u0026amp; Disparities 2025, Smythe et al. \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2022\u003c/span\u003e), with long-standing negative effects on the wellbeing of parent(s) and children (Howard and Khalifeh \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Neurodivergent people (e.g., autism, attention deficit hyperactivity disorder, ADHD; including those who self-identify) are at increased risk (Hampton et al. \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2022\u003c/span\u003e, Murray et al. \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). In the United Kingdom (UK), recent concerns were raised about the state of maternity services and the resulting psychological impact (APPG, 2024). In this context, it is essential to understand perinatal mental health research priorities of women and birthing people, as well as whether these differ based on neurotype. While some have reported on the research priorities of neurodivergent people (Pellicano et al. 2013), and separately on perinatal research priorities in the general population (Mossinger et al., \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2023\u003c/span\u003e), to our knowledge, this is the first community-based participatory priority-setting exercise within perinatal mental health in the UK to include a neurodiverse sample.\u003c/p\u003e"},{"header":"2. MATERIALS AND METHODS","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1. \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eThe\u003c/span\u003e [STUDY NAME REDACTED] \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003estudy\u003c/span\u003e\u003c/h2\u003e \u003cp\u003eThe [STUDY NAME REDACTED]([ACRONYM REDACTED], [OSF LINK REDACTED] study aims to better understand perinatal mental health risk and resilience factors in people with different neurotypes. [STUDY NAME REDACTED] is co-produced by a diverse team of multi-disciplinary researchers and lived experience experts, with community members paid for their time following NIHR guidelines. The survey [OSF LINK REDACTED; DOCUMENT INCLUDED AS SUPPLEMENT], was iteratively developed through regular focus groups, email communication, and collaborative online documents. Ethical approval was obtained from [UNIVERSITY NAME REDACTED] Research Ethics Committee (HR/DP-22/23-36808, HR/DP-22/23-38899). All participants provided written informed consent. Qualitative data was included only for participants who have provided consent for the publication of anonymous quotations.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2. Recruitment\u003c/h2\u003e \u003cp\u003eParticipants were eligible if they were aged\u0026thinsp;\u0026ge;\u0026thinsp;16 years, lived in the UK, and had recent experience of pregnancy (i.e., were currently pregnant and/or had been pregnant in the last 5 years). Data collection took place August 2023 to January 2024. We used a convenience sample method intended to reach a variety of viewpoints and to over-sample for neurodivergence and history of poor mental health. Online flyers were disseminated via social media (e.g., Facebook, Instagram, Twitter/X), organisations (e.g., Maternity Autism Research Group, ADHD Adult UK, Dyspraxia UK, PACT Southwark, Best Beginnings, Birthing Trauma Association), forums (e.g., Mumsnet, Netmums), and through snowball sampling (i.e., asking participants to share the survey within their networks). Printed flyers were posted in public areas (e.g., notice boards, community centres, libraries, cafes, university buildings). The survey was hosted on the Qualtrics online platform and took approximately 20 minutes to complete. As a thank you for their contributions, participants were entered into a prize draw with a chance to win an Amazon voucher (\u0026pound;10-\u0026pound;100). Bot responses were identified and excluded using a comprehensive strategy [OSF LINK REDACTED; DOCUMENT INCLUDED AS SUPPLEMENT],\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3. Survey\u003c/h2\u003e \u003cp\u003eThis analysis is based on a subset of questions from the [STUDY NAME REDACTED] survey. Participants were shown a list of 15 research topics focused around perinatal mental health and co-developed by the [STUDY NAME REDACTED] team based on the World Health Organisation Action Plan 2013\u0026ndash;2030 (see Supplement Table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003eS1\u003c/span\u003e). Participants were asked to select \u0026ldquo;the top 5 topics that you think are most important for researchers to focus on\u0026rdquo;. For these 5 choices, participants were then asked to \u0026ldquo;rank these topics in the order of importance to you, with 1 being most important\u0026rdquo;. Lastly, participants were provided with an open-text response box about whether there were \u0026ldquo;any other topics or questions that you think researchers should focus on\u0026rdquo;. Demographics were collected, including diagnoses of neurodevelopmental (NDC) and mental health conditions.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4. Statistical analysis\u003c/h2\u003e \u003cp\u003eQuantitative data was cleaned and analysed using R (version 4.3.2) and the full code is available at [GITHUB LINK REDACTED; DOCUMENT INCLUDED AS SUPPLEMENT]. For reporting purposes, participants were divided into categories decided with lived experience input: Neurodivergent (\u0026ldquo;Yes, I have been diagnosed with this\u0026rdquo;, \u0026ldquo;Yes/Likely yes, I have never received a diagnosis but this applies to me/I self-identify with this\u0026rdquo;), Not Neurodivergent (\u0026ldquo;No, I have never been diagnosed with this), and Maybe Neurodivergent (\u0026ldquo;Maybe, I think this may apply to me but I am not sure\u0026rdquo;). Additional analyses further subdivided these categories based on participant neurotype (autism, ADHD, other conditions such as dyspraxia and dyslexia, see Supplement).\u003c/p\u003e \u003cp\u003eQualitative data from the open-ended question were analysed following an approach based on Krippendorff\u0026rsquo;s content analysis (Krippendorff \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e1989\u003c/span\u003e). Answers were read by two researchers independently [INITIALS REDACTED] to exclude non-valid entries (e.g., \u0026ldquo;do not want to answer\u0026rdquo;), achieving consensus on the dataset to be analyzed. They independently identified preliminary codes, which were compared and refined through discussion to develop a final codebook. [INITIALS REDACTED] independently sorted the coding units (sub-sentences/excerpts) into the agreed codes and achieved consensus through a series of discussions. Codes were discussed with another researcher [INITIALS REDACTED] for agreement purposes. Frequency codes were calculated.\u003c/p\u003e \u003c/div\u003e"},{"header":"3. RESULTS","content":"\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch2\u003e3.1. Quantitative data\u003c/h2\u003e\n \u003cp\u003e709 participants were included (median age 34 years, range 21\u0026ndash;53). Participants were oversampled for neurodivergence, including autism (between 12.1% \u0026ldquo;yes/likely yes\u0026rdquo; and 23% also including \u0026ldquo;maybe\u0026rdquo;), ADHD (14.7\u0026ndash;27.2%), and other neurodevelopmental conditions (11.6\u0026ndash;14.8%), and for history of poor mental health, including depression (52.5\u0026ndash;60.8%), anxiety (59.8\u0026ndash;71.5%), and other mental health conditions (21.4\u0026ndash;26.8%). Many participants had several diagnoses and/or intersectional identities.\u003c/p\u003e\n \u003cp\u003eMost participants identified as women (96.9%), heterosexual (82.5%), white (90.8%), were university educated (82.2%), and in a relationship (95.8%). 18.9% of participants were pregnant at the time of completing the survey and the remainder had been pregnant in the previous 5 years. 32% participants had been pregnant during COVID-19 pandemic lockdowns.\u003c/p\u003e\n \u003cp\u003eIn the whole sample and the neurodivergent (NDC) subsample, the top research priorities identified by participants included interventions and diagnoses for women and birthing people, as well as parent-infant relationships (see Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e). The bottom research priorities included health outcomes for partners and social/economic outcomes of poor perinatal mental health. While there are some differences between the whole sample and neurodivergent subsample in the order of priority scores, these differences are minor (See Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e and Table S2 for reporting by neurodivergence type).\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\n \u003ch2\u003e3.2. Qualitative data\u003c/h2\u003e\n \u003cp\u003eQualitative data included n\u0026thinsp;=\u0026thinsp;253 participants, as n\u0026thinsp;=\u0026thinsp;3 participants did not consent to their qualitative data being used and n\u0026thinsp;=\u0026thinsp;453 participants did not provide a (valid) response to this question. A summary of the resulting themes and corresponding quotes is presented in Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, with reporting split by neurotype. Despite participants being asked to list \u0026ldquo;any \u003cem\u003eother\u003c/em\u003e topics or questions \u0026hellip;\u0026rdquo;, many wrote about topics already in the list provided, adding examples of research questions (e.g., for \u0026ldquo;prevalence\u0026rdquo; - \u0026ldquo;The prevalence of mental health struggles and the specific struggles of autistic or ADHD birthing people\u0026rdquo;), suggesting specific sub-topics (e.g., \u0026ldquo;Family/friend support of the pregnant person\u0026rdquo; as a protective factor), or adding additional detail regarding the importance of a topic (e.g., \u0026ldquo;The hardest and most traumatic part for me was my experience of the postnatal ward - it would be useful to include this in your work\u0026rdquo;, as environmental risk). To capture this nuance, some of the existing topics were subdivided into separate codes (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e Section A. Existing themes). Key additional themes (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e Section B) emerging across neurotypes included healthcare experiences, perinatal trauma, birth experiences, and socio-economic circumstances. Neurodivergent participants highlighted the importance of researching neurodivergence, including specific experiences (e.g., \u0026ldquo;Does autistic meltdown in pregnancy affect baby\u0026rdquo;), associations between neurodiversity and physical health (e.g., \u0026ldquo;Any link to hyperemesis and neurodiversity\u0026rdquo;) or differences in how neurodivergent people are treated in perinatal settings (e.g., \u0026ldquo;I felt that the process is tailored to neurotypical people and left me feeling anxious because I felt there was a lot of stuff I was expected to know / do without being told\u0026rdquo;). Some participants highlighted the lack of research into perinatal mental health in neurodivergent women, with focus often being on infant outcomes (\u0026ldquo;Anything I tried to find out about only led me to things about \u0026lsquo;how to prevent autism during pregnancy\u0026rsquo;\u0026rdquo;) (See Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e and Supplementary Table S3).\u003c/p\u003e\n\u003c/div\u003e"},{"header":"4. DISCUSSION","content":"\u003cp\u003eThis is the first study reporting on perinatal mental health research priorities of neurodiverse people. While many neurodivergent people advocated for more neurodiversity-focused and inclusive research, others identified priorities that mirrored those of neurotypical participants. Across neurotypes, participants emphasized the need for research into (1) effective interventions and support for birthing people experiencing poor perinatal mental health, and (2) improved diagnosis of perinatal mental health conditions. These priorities align with calls for better identification and management of maternal mental disorders (Howard and Khalifeh \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2020\u003c/span\u003e) and with evidence of complex, multilevel barriers to accessing support in the UK (Smith et al. \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2019\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eUndiagnosed and/or untreated perinatal mental health problems can have long term adverse impacts on women/birthing people, as well as on their child(ren) (Rogers et al., \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Participants in our study highlighted the need for more research into the impact of poor perinatal mental health on (3) parent-infant relationships and health outcomes of both (4) women and (5) their children.\u003c/p\u003e \u003cp\u003eFurther, qualitative data emphasized the need to understand how birth experiences and healthcare provision can function as either risk or protective factors for perinatal mental health, often echoing findings from recent reports on birth trauma (APPG, 2024). To ensure that perinatal research and services better reflect the needs of \u003cem\u003eall\u003c/em\u003e families, it is imperative that further research is conducted including more demographically diverse samples (Miller et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2024\u003c/span\u003e) and a neurodiversity-affirmative framework (Heraty et al., \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2023\u003c/span\u003e).\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAll authors made substantial contributions to the work presented in this manuscript, as follows: conceptualisation (AL, SH, AR, EE, TB, JS, VR, HS, JL, AJ, ALZ, DMS), data curation (AL, SH, CJ), formal analysis (AL, SH, CJ, DMS), funding acquisition (AL), investigation (AL, SH, AR, EE, TB, JS, VR, HS, SM, DMS, CJ), methodology (AL, SH, DMS), project administration (AL), supervision (AL), writing-original draft (AL), writing \u0026ndash; review and editing (AL, SH, CJ, AR, EE, TB, JS, VR, HS, JL, AJ, SM, ALZ, DMS). All authors approved the version to be published and agree to be accountable for all aspects of the work, in line with ICMJE guidelines.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eWe would like to acknowledge the contributions of our participants, without whom, this work would not have been possible. We also want to acknowledge the contributions of other WANDA Community lived experience experts who did not want to be named as authors. Finally, we would like to thank our funders and the charities and organisations who have helped distribute the survey link, particularly: Birthing Trauma Association, Maternity Autism Research Group, ADHD Adult UK, Dyspraxia UK, PACT Southwark, and Best Beginnings. This study was funded by the King\u0026rsquo;s College London\u0026rsquo;s Public Engagement Small Grant Scheme (made possible by Research England and the King\u0026rsquo;s College London Research Talent department) and the King\u0026rsquo;s College London Institute of Psychiatry, Psychology, and Neuroscience (IoPPN) \u0026ldquo;Early Career Researcher Award\u0026rdquo;; both of these grants were awarded to Dr Alexandra Lautarescu\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe study survey and analysis code for the quantitative analysis are provided in full as OSF and GitHub links. The qualitative data is shared in full as part of the Appendix, for all participants who have given consent for this. We do not have participant consent to share any of the quantitative data at participant level.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAPPG: All-Party Parliamentary Group on Birth Trauma (2024) Listen to Mums: Ending the Postcode Lottery on Perinatal Care\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHampton S, Allison C, Aydin E, Baron-Cohen S, Holt R (2022) Autistic mothers\u0026rsquo; perinatal well-being and parenting styles. Autism 26(7):1805\u0026ndash;1820\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHeraty S, Lautarescu A, Belton D, Boyle A, Cirrincione P, Doherty M, Douglas S, Plas JR, Van Den Bosch K, Violland P, Tercon J (2023) Bridge-building between communities: Imagining the future of biomedical autism research. Cell 186(18):3747\u0026ndash;3752\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHoward LM, Khalifeh H (2020) Perinatal mental health: a review of progress and challenges. World psychiatry 19(3):313\u0026ndash;327\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKrippendorff K (1989) Content Analysis: An introduction to its methodology. Sage\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMiller ML, Dupree J, Monette MA, Lau EK, Peipert A (2024) Health equity and perinatal mental health. Curr psychiatry Rep 26(9):460\u0026ndash;469\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMossinger C, Manerkar K, Crowther CA, Harding JE, Groom KM (2023) Research priorities for maternal and perinatal health clinical trials and methods used to identify them: A systematic review. Eur J Obstet Gynecol Reproductive Biology 280:120\u0026ndash;131\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMurray AL, Taut D, Baban A, Hemady CL, Walker S, Osafo J, Sikander S, Tomlinson M, Toit SD, Marlow M, Ward CL (2022) Associations between ADHD symptoms and maternal and birth outcomes: An exploratory analysis in a multi-country cohort of expectant mothers. J Atten Disord 26(14):1882\u0026ndash;1894\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePellicano L, Dinsmore A, Charman T (2014) What should autism research focus on? Community views and priorities from the United Kingdom. Autism 18(7):756\u0026ndash;770\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRogers A, Obst S, Teague SJ, Rossen L, Spry EA, Macdonald JA, Sunderland M, Olsson CA, Youssef G, Hutchinson D (2020) Association between maternal perinatal depression and anxiety and child and adolescent development: a meta-analysis. JAMA Pediatr 174(11):1082\u0026ndash;1092\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSmith MS, Lawrence V, Sadler E, Easter A (2019) Barriers to accessing mental health services for women with perinatal mental illness: systematic review and meta-synthesis of qualitative studies in the UK. BMJ Open 9(1):e024803\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSmythe KL, Petersen I, Schartau P (2022) Prevalence of perinatal depression and anxiety in both parents: a systematic review and meta-analysis. JAMA Netw Open 5(6):e2218969\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTables 1 and 2 are available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"perinatal mental health, participatory research, research priorities, neurodiversity, mixed-methods","lastPublishedDoi":"10.21203/rs.3.rs-8336902/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8336902/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eA co-designed mixed-methods survey was conducted as part of the [STUDY NAME REDACTED FOR DOUBLE-ANONYMOUS PEER REVIEW] study. 709 participants in the United Kingdom quantitatively rated and ranked research topics within perinatal mental health, with 253 also providing qualitative data. The top research priorities across neurotypes were (1) interventions and (2) diagnosis for perinatal mental health problems for birthing people and (3) how these impact parent-infant relationships. Qualitative data revealed additional topics of importance including healthcare experiences, trauma, and neurodiversity.\u003c/p\u003e","manuscriptTitle":"Perinatal Mental Health Research: Research priorities from a neurodiverse sample in the United Kingdom","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-02 13:00:13","doi":"10.21203/rs.3.rs-8336902/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"fcb3e9cd-4472-4f4f-ade2-b58000af14ea","owner":[],"postedDate":"March 2nd, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-05-11T20:53:09+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-02 13:00:13","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8336902","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8336902","identity":"rs-8336902","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}