Autistic people's experiences of perinatal mental healthcare V4
Research type
Research Study
Full title
Autistic Mothers' and Birthing Peoples' Experiences of Perinatal Mental Health Care: An Interpretative Phenomenological Analysis
IRAS ID
337360
Contact name
Emma Armstrong
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
1 years, 2 months, 9 days
Research summary
Summary of Research
The perinatal period refers to pregnancy and the first 12 months after child birth. The literature reports that autistic mothers are more likely to face challenges during this time, whilst navigating sensory and physical experiences, and communicating with professionals. This can result in motherhood feeling isolating, placing this population at increased risk of perinatal mental health (PMH) difficulties. This research aims to add to the literature by exploring autistic women and birthing people's experiences of PMH difficulties, specifically focussing on their experiences of mental health care. 8-12 women and birthing people, over the age of 18, who have experienced PMH difficulties and have received a diagnosis of autism spectrum disorder (ASD) will be recruited. Recruitment will start through NHS PMH Services. The services who will be supporting recruitment for the study are the North Yorkshire and York NHS Community PMH Service, Durham and Darlington NHS Community PMH Service, Teesside NHS Community PMH Service, Derbyshire NHS Community PMH Service and South West Yorkshire NHS Community PMH Service. Information of the study will be advertised to all service users who are accessing the service or have accessed the service. Participants will self-identify their eligibility and contact the researcher if interested in the project. If required, recruitment may be broadened to those who have not accessed NHS PMH services. Participants who consent to taking part will be interviewed by the researcher using a semi-structured interview schedule about their experiences of PMH difficulties and care they received. The interview will take approximately 30-90 minutes in a location preferred to the participant, either online, at the University of Sheffield or at their PMH service. The interview data will be typed up and analysed using a qualitative method called Interpretative Phenomenological Analysis (IPA). This project is part of a doctorate qualification.
Summary of Results
Information about the research The perinatal period is defined as the time from planning for a child to two years after birth. Autistic people are more likely to face challenges during this time and are at increased risk of mental health challenges. A study was conducted to understand the experiences of autistic women and birthing people who have experienced mental health difficulties in the perinatal period, focusing on their experiences of mental health care. The study was completed by Emma Armstrong (Principal Investigator, Trainee Clinical Psychologist) and funded by the University of Sheffield. Two autistic volunteers supported the design of the study, including the documentation shared with participants, the interview questions, and one volunteer supported the reflective processes required for data analysis. The study received National Health Service (NHS) Health Research Authority (HRA) ethical approval (IRAS: 337360).
Who took part in the study and what happened during the study?
Five autistic women were recruited through three NHS community perinatal mental health services in two NHS trusts, social media and national and local charities. One participant was interviewed in person in the NHS service they were receiving support from, and four participants via video call. All participants were interviewed by Emma. The method Interpretative Phenomenological Analysis (IPA) was used to gather information from the participants and analyse the information. This approach was chosen as it is centred on participants’ experiences and allowed Emma to actively think about her position as a neurotypical healthcare professional, and how this may influence her perspective on the information shared. Interviews lasted between 50-113 minutes, and participants were provided with the opportunity for further emotional support following interviews if required.
What were the results of the study?
Results showed that through participants’ perinatal experiences and the process of receiving help, participants felt increasingly different and disconnected from others around them. For many, this was a longstanding experience and was amplified through the perinatal period, due to facing predefined pathways associated with motherhood and mental health, in which participants did not feel aligned. Participants’ experienced judgement in the context of this ‘difference’.
Participants also spoke about the barriers to receiving mental health support. This reflected experiences of information and support being gatekept, feeling overlooked, the influences of power on choice and longstanding experiences of feeling failed and let down. These experiences shaped participants’ relationship towards help, losing trust in the systems and structures that are there to support them.
Participants described the value of understanding. Understanding was developed in different ways, including through an autism diagnosis and through therapeutic support. Where understanding had been achieved, this supported processes towards acceptance, both from themselves and others. Understanding also opened pathways of support with others who shared similarities. For some, connecting with others who shared similar experiences positively influenced how participants looked back on their experiences and how they felt about themselves.
How has this study helped?
Other studies have reported that women’s experiences of accessing and receiving perinatal mental healthcare are shaped by many factors on an individual, professional, organisational and societal level. Results from the current study provide early evidence to suggest that at each level, autistic women and birthing people face barriers. Services supporting women and birthing people, including General Practice (GP) services, health visiting, maternity, and mental health services, should consider the accessibility of support for autistic women and birthing people.
Results also highlighted experiences of stigma and discrimination faced by autistic women regarding different aspects of their identity. It is important that we continue to increase conversations about ‘difference’ in parenthood, away from predetermined pathways and stereotypes, as this has the potential for social change. This may be achieved through increasing inclusion of autistic women and birthing people’s voices in policy, literature and research.
Participants highlighted the benefit of receiving an autism diagnosis, however described feeling like a “miracle” that it had been obtained. It is important that healthcare professionals understand autism, particularly what this may look like in adult women and birthing people, alongside holding an awareness of options on a local level for timely diagnostic assessments, to prevent the challenges experienced before diagnosis.
Finally, participants spoke about the benefit of connecting with others who shared similarities in their experiences. Considerations on a national and local level should be made about the availability of peer support for autistic women and birthing people, and maternity and health services should facilitate clients’ connection with these services, should this be deemed to be helpful.
Where can I learn more about this study?
If you would like further information on the design of the study, visit Health Research Authority https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.hrs.nhs.uk%2F&data=05%7C02%7Capprovals%40hra.nhs.uk%7C2b17754a35544bc1d77e08dde96ac965%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638923367071145760%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=98laTT7TidxY%2FzGxVe4myQEKSiizlQxH%2B6YUlbSgPsU%3D&reserved=0 (reference: 337360). Alternatively, if you would like to discuss the findings of the study, or would like additional information about the study, please contact Emma Armstrong (earmstrong6@sheffield.ac.uk) or her supervisor Professor Megan Freeth (m.freeth@sheffield.ac.uk).REC name
North of Scotland Research Ethics Committee 2
REC reference
24/NS/0044
Date of REC Opinion
6 Jun 2024
REC opinion
Further Information Favourable Opinion