Miscarriage Australia- Navigating miscarriage together

Problem

About 25% of pregnancies end in miscarriage. Although considered by health practitioners as routine and easily managed, miscarriage often has significant psychological impacts on women, partners and families, exacerbated by public silence around this event. Our previous qualitative research explored women’s, men’s and health care practitioners' experiences of clinical and social care connected to miscarriage, as well as perceived needs for psychosocial support. GPs reported the lack of guidelines on miscarriage care, especially around emotional and psychological support, and noted difficulty in locating relevant resources. Our survey of 400 women who experienced miscarriage showed 88% would have liked to be asked how they were coping emotionally, to be referred for counselling or receive information about pregnancy loss support organisations. The aim of this study was to design, develop and evaluate the Miscarriage Australia website.

Approach

Our body of research showed stakeholders wanted local evidence-based information that was more focussed on miscarriage than the UK Tommy’s site, which manages pregnancy and birth as well. Using a human centred design approach, we collaborated with clinicians and users to produce the website Miscarriage Australia.

Findings

In its first 15 months, Miscarriage Australia has had over 100,000 visits (from Australia, US, UK, Canada, Phillipines, New Zealand, South Africa, Singapore and Ireland). Feedback from over 1000 users shows the most visited page is “Supporting someone who has had a miscarriage’, followed by pages describing types of miscarriage and asking ‘Am I having a miscarriage?’ Over 85% users find the information useful, clear and easy to understand, helpful, easy to find, and would recommend the site to others. We have over 700 Facebook Followers, and 200 on Instagram.

Consequences

In Australia pregnancy care is often shared between general practice and hospital. While large public hospitals may offer some patient support, rural areas are particularly bereft of support services and can rarely offer anything other than physical care. The Miscarriage Australia website, which uses quotes and advice based on evidence from our research, has been officially recognised as a reputable source of miscarriage information by Healthdirect, Australia’s national health advice service which provides 24/7 helplines, Better Health Victoria, and over 20 other organisations. It is filling a much-needed gap in the system. In October 2023, Miscarriage Australia co-initiated the first ever Miscarriage Roundtable for the Australian Government. Miscarriage Australia is filling a much-needed gap in health support, providing information and advocacy not only for those who experience miscarriage, but also those who care for them.