"It was very interesting to see themes beginning to develop, and we have since used the interviews in two ways. We have written an academic paper about women’s support needs during recovery. Secondly, we have developed user-friendly web information to guide people through the first year of recovery."
On this page
All of our information and support is based on research and co-creation with people who have been there, perinatal clinicians and academics. On this page we explain more about the processes involved in developing our resources.
With the help of APP members we conducted research into recovery from postpartum psychosis (PP). The research included a survey of recovery outcomes in 218 women who have experienced an episode of PP, led by Dr Heron at Birmingham University and medical student, Lauren Lewis.
We also conducted a smaller in-depth interview study, training researchers with personal experience of PP in qualitative research methods, to conduct interviews about factors that help and hinder women's recovery.
The recovery advice developed by members of APP is available here. Naomi Gilbert, who was one of the lived experience researchers, explains how we developed the information:
"In August 2009 I had the privilege of meeting four other women who had experienced postpartum psychosis, at a research workshop organised by Dr Jess Heron. We learned about qualitative research from experts in the field, Dr Jon Ives, Prof Anne Davies, and Sonal Shah, at Birmingham University and the Centre for Excellence in Interdisciplinary Mental Health (CEIMH). During the training we designed interview questions and conducted interviews with each other about recovering from PP.
The interviews were audio-recorded and I listened to each one many times over to produce written transcripts for us to analyse. It was very interesting to see themes beginning to develop, and we have since used the interviews in two ways. We have written an academic paper about women’s support needs during recovery which has been published. Secondly, we have developed user-friendly web information to guide people through the first year of recovery. The information uses our collective experiences and describes three stages of recovery (‘the early days’; ‘rebuilding confidence’ and ‘moving on’) and is available here.
For me personally, writing the web information has been a tremendously moving and helpful process. When I was expecting my second child it was so useful to reflect on all the things that helped me to come to terms with postpartum psychosis, and the things I wish I had known earlier. We really hope this guide will inspire women and their families in the early stages of recovery to have hope for the future and understand what to expect.
During the workshop we also produced a short film with the help of Lucy Vernall from IdeasLab which you can see here (we had great fun doing this too as you can see from the giggle montage at the end!)."
In several pieces of research, women have told us that there needs to be more support for their partners during their episode of postpartum psychosis (PP). With this in mind, Dr Heron at Birmingham University, with the support of two medical students, conducted an in-depth qualitative study and a larger survey of APP partners, to investigate the experience of partners during an episode of PP and the type of support they would find acceptable. We also supported a third study conducted by Nia Holford at Cardiff University into men’s experience of MBU admission.
In a postal survey of the partners of APP members sent out by medical student, Sarah Sandell, we found that only 30% of partners were satisfied with the level of information and support provided to them by the NHS. Requested services included web-based information for partners, time with health professionals, and in the long term - counselling, and conversations with other men who had been through similar situations.
Twenty in-depth telephone interviews conducted with women's partners by medical student, Alice Blackwell, found that men lacked information, lacked support, felt shock at not being informed about the symptoms of PP antenatally and described it as one of the most exhausting, lonely, distressing and traumatic events of their lives. They wanted more time with health professionals to ask questions and to have been able to talk to other men who had been through it.
Nia Holdford, a DClinPsy student from Cardiff University, conducted a study of men’s experiences from two UK Mother and Baby Units. Nia also found that men were shocked and exhausted, lacked information and felt frustrated with health professionals. Read the research findings here.
Using the study findings, we worked with a writing group of dads, perinatal clinicians and academics experts to develop our partners guide which you can read here. You can also read our web advice for partners here.
APP has now set up a partners’ peer support service, and monthly dads and co-parents group for dads and co-parents needing information or support anywhere in the UK. Find out more here.
We surveyed APP peer support volunteers about their experience of planning a pregnancy after PP or a bipolar diagnosis and about the resources they had used (or developed themselves!). We asked about their experiences of making conception decisions, navigating pregnancy, birth and the postpartum period; and about their experiences of supporting others through the perinatal period as peer supporters. We worked with a lived experience writing group, perinatal clinicians and academic experts on the topic to develop the information for our guide.
We used a survey, face to face workshops and an online working group to create our latest (yet to be published) Insider Guide 'Parenting after PP' and our online resources. Clare Foster, who led the project, explains more.
"We started with a survey. This helped to give us a sense of people’s experiences and the need for the products. I used the survey responses to develop two workshops which I ran during a volunteer event in Birmingham.
We discussed parenting experiences and needs at various ages and stages of recovery. We also thought about what different-aged children might need to know. We also looked at some existing resources written to help talk to children about various mental health problems.
Working with women and their partners is vital. Experiences of PP and recovery are so varied. So are experiences of parenting and the needs of individual children. We are certainly not going to be telling people what to do or how to parent. We want to produce something that recognises possible difficulties – and offers support, suggestions and signposting to help address them.
I continued to co-create these resources online using a private working group on Ning. Here volunteers were able to offer comments and suggestions on my outline and drafts. It’s amazing how many people signed up. APP is really lucky to have a group of such passionate, thoughtful and dedicated volunteers".