In vitro fertilisation (IVF) can be an emotional rollercoaster and there are no resources that support patients and partners across an IVF cycle – until now! We worked with patients, partners and social supporters to understand their experiences. Together, we turned this evidence into an online intervention to support people during their treatment.
What did the research involve for patients?
Patients completed online surveys every second day during their IVF cycle to log their emotions and coping strategies. They did longer surveys when they joined the study, part way through and at the end that measured risk factors (like anxiety and depression) and protective factors (like resilience). They also told us what kind of support they want. All up, there were 221 cycles from 179 patients.
What did the research involve for partners and social supporters?
Partners, friends and family did qualitative interviews or surveys. They told us what it was like for them to go through IVF (or support someone who is), and shared coping strategies that work and what to avoid. All up, 37 partners and 28 supporters were involved.
How did we make the website?
We used the evidence from the surveys and interviews to write content and design interactive tools. Then we worked with patients, partners and supporters to get feedback on the content, input on the design, and advice about how everything should be organised.
Visit the website: myivfsupport.com.au.
"The website is now live. It’s free, it’s evidence-based and it was created by people who have done IVF. We hope it helps." - Dr Katrina Moss
Why do we need a website?
Fertility treatment can be challenging: up to 50% of women and men experience anxiety or depression during treatment. Only about 1 in 3 cycles results in a live birth so most people will need to do multiple cycles. The more cycles you do, the harder it can feel. Fertility clinics provide essential support but they can’t be there every day. Family and friends often want to help but might not know how. Our website complements these existing supports by providing information and support across the whole cycle.
What's on the website?
The website has four sections:
- The guides section provides simple, evidence-based information about IVF. It explains the different types of IVF and what happens in each phase of a cycle. It encourages people to think about treatment differently – as a series of roundabouts rather than a straight line – and has information on unplanned exits and what might happen when plans change.
- The patient section gives people on what to expect emotionally so they feel prepared, and has interactive tools to help them deal with challenges, think about the support they want, and understand their coping style. During the cycle it provides information on what to expect medically emotionally at every step, and has a mood tracker where people can log their moods and get personalised coping suggestions. It also explains what might happen at the end of the cycle and possible next steps.
- The partner section gives people information on what to expect emotionally, including unique experiences for female partners in same-sex relationships. There’s interactive tools to help them deal with challenges, plan their support and understand their coping style. There’s also a section on how they can look after themselves through the process.
- The social supporters section helps people to understand IVF so they know what their loved ones are going through. It provides practical suggestions about the types of support that can help and has a conversation guide that walks people through how to have a supportive conversation and what to avoid. There’s also a section on how to look after themselves while caring for others.
Are you doing fertility treatment or supporting someone who is? Visit: myivfsupport.com.au.
And if you know someone who’s doing IVF, pass it along!
One in six Australian couples experience infertility and more than 100,000 cycles of Assisted Reproductive Technology are performed in Australia each year. Even though about 50% of patients and partners will experience anxiety or depression, only 20% or less will receive mental health support.
Fertility specialists, nurses, administrators and scientists all provide important support. However, fertility clinics are not available 24/7. Our website is designed to complement the support people receive from clinics, not replace it.
The website provides detailed information on fertility treatment, including the types of cycles, what to expect medically and emotionally in each stage, and what can go wrong. It provides an online coping intervention (including a mood tracker) and tips on dealing with bad news.
We’ve designed the website to support clinical practice and there are several ways you can use it in your work with patients and partners:
Using the website in clinical practice
- Use the guides section to walk them through what happens in the type of cycle they will be doing, including the idea that treatment isn’t always a straight line. People don’t always remember everything that is communicated in a medical appointment – if you walk them through the guide they can come back if they forget something or need more information. There’s a detailed version in the guides section and a shorter version in the social supporters section.
- Encourage people to access the patient and partner sections on the website so they know what to expect and go into treatment feeling prepared.
- During treatment, encourage patients to use the mood tracker so they know that the way they’re feeling is normal, and can log their emotions and receive personalised coping suggestions to help them feel better. Encourage partners to read the “looking after yourself” section so they don’t forget their needs are important too.
- Suggest that patients and partners refer their friends and family to the social supporters section of the website. Receiving helpful support during treatment reduces the chance that patients and partners will isolate themselves from their social support network.
- At the end of the cycle, use the “after your cycle” tab in the patient section to provide information on what the outcome of the cycle means (e.g., positive pregnancy test, viable embryos, no viable embryos, cancelled cycle) and talk them through possible next steps. Again, patients and partners can come back to this section later if they forget something or need more information.
Visit the website here: https://myivfsupport.com.au
See the sitemap below so you know what’s available:
Dr Katrina Moss, Chief Investigator, The University of Queensland
Dr Moss is a registered psychologist and postdoctoral research fellow at the Australian Women and Girls’ Health Research Centre (AWaGHR), The University of Queensland. She is both a patient and a researcher – she has done 13 cycles of IVF and has a first-hand understanding of the ups and downs. On the research side, she conducted her PhD on stress and coping, and has expertise in integrating medical and psychosocial care, perinatal maternal mental health, and use of assisted reproductive technology by women with reproductive issues.
View further information on Dr Moss
Professor Gita Mishra, Associate Investigator, The University of Queensland
Professor Mishra leads the Australian Women and Girls’ Health Research Centre (AWaGHR). She is internationally recognised for expertise in women’s health, health policy and research translation, epidemiology, and biostatistics.
View further information on Professor Mishra
Dr Hayden Homer, Clinical Investigator, The University of Queensland
Dr Homer is a fertility specialist, reproductive endocrinologist, gynecologist and leading fertility researcher. He holds the position of Chair in Reproductive Medicine at The University of Queensland.
Dr Karin Hammarberg, Clinical Investigator, Monash University
Dr Hammarberg is a registered nurse and has more than 20 years experience working with IVF patients. She works with the Victorian Assisted Reproductive Treatment Authority on translating health information into accessible patient resources.
Professor Jacky Boivin, Clinical Investigator, Cardiff University
Professor Boivin is a health psychologist who leads the Cardiff Fertility Studies research group, her work focuses on the psychological aspects of fertility and development of online intervention and coping resources.
Dr Jane Fox, Project Coordinator
Dr Fox has extensive experience managing and coordinating clinical research in obstetrics, maternal fetal medicine and neonatology.
Dr Anjana Rai, The University of Queensland
Dr Rai is a public health researcher in women’s and children’s health with an interest in improving psychosocial wellbeing.
Dr Sarah Gill, Cardiff University
Dr Gill’s research focuses on reproductive health, women’s health and digital health interventions that enhance health care delivery.
Marc Heatley
Mr Heatley uses co-production to translate research and lived experience into online platforms that create change
