Research project
Title: Information and support needs during recovery from postpartum psychosis
Project timescale: From 24 July, 2009 to 19 February, 2012
(Added to website on: 14 January, 2013 - Date last updated: 15 January, 2013)
Source of funding:
MHRN Heart of England Hub, Birmingham & Solihull Mental Health Foundation Trust Charitable Funds Committee, The Royal College of General Practitioners Scientific Foundation Board, and the Centre for Excellence in Interdisciplinary Mental Health
Aims: This study aimed to gain an in-depth understanding of the difficulties faced by women recovering from postpartum psychosis in order to: inform the planning of services and develop information for women and their families.
Research designs used:
Other: systematic qualitative study
Methods used to collect data:
Interviews
Other (please specify):
Research project description: A workshop in qualitative research methods took place over two days at the Centre for Excellence in Interdisciplinary Mental Health in Birmingham. Training in qualitative research and interview skills was provided. Then the study aims and objectives were defined by service user researchers (SURs) in collaboration with academics and an interview topic guide was constructed. During the training, SURs were taught about the process of obtaining informed consent and obtained signed consent from their interviewees prior to interview. SURs conducted one-to-one semi-structured interviews with each other about their experiences of recovery. Interviews were recorded and later transcribed by one of the SURs. Analysis was conducted by two SURs together with two academics.
Stages at which the public were involved:
Disseminating research
Prioritising topic areas
Planning the research
Assisting in finding and designing appropriate
ways of approaching participants
Designing the research instruments
(eg questionnaires, patient information sheets)
Final Research Report
Undertaking the research
Contributing / commenting on final report
Analysing the research
Speaking about the research eg
workshops, presentations
Writing about the research eg
publications, newsletters
Other: It led to four of us helping to set up the charity APP-Action on Postpartum Psychosis and becoming active trustees of it.
Description of public involvement in research stages: There have been few research projects involving this degree of input from service users, from: collaborating in the design of the study; conducting the interviews ourselves; sharing the analysis; presenting the findings.
Training and support provided for either members of the public or researchers involved in the project: Yes - the training component of the two-day residential workshop is described above under the Research Project Description.
Examples of ways the public have made a difference to the research project: There is very little research on postpartum psychosis so our contribution in terms of formulating the right questions was invaluable. It also gave the academics significant insight into the lived experience of the condition. We made a YouTube video to help other women. Conducting the interviews ourselves was very important as this is a very stigmatised illness and it made it easier for women to open up about their experiences. I have presented the findings at several conferences, including three internationally and several academics have approached me for information as a result (as a service user I stood out a bit).
Evaluating the impact of public involvement in the research: No because there were only five participants, too small a study to evaluate impact.
Details of publications or reports resulting from the research: The project was reported in the APP newsletters which can be found on the website at www.app-network.org. My presentation to the International Marce Society at Pittsburg 2010 can be heard on their website www.marcesociety.com/. It was also published in the journal Archives of Women's Mental Health.
Links to Reports:
Information and support needs during recovery from postpartum psychosis
Was/is your project user controlled: Yes
Yes in that we decided on the topic guide and conducted the interviews ourselves. As stated two of us were involved in the analysis but the paper was drafted by an academic.
For further information on the project, please contact:
Clare Dolman
Service user researcher/participant
APP - Action on Postpartum Psychosis
Room 225 Monmouth House, Department of Psychological Medicine
University Hospital Wales
Heath Park
Cardiff
CF14 4XW
United Kingdom
join@app-network.org
029 2074 2038
Website: www.app-network.org
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