PLEASE NOTE THAT THIS STUDY IS NO LONGER RECRUITING.  Please see our thanks to participants. 

 

This is the participant information sheet for Charys’s research study. If you decide to take part in the study, Charys will ask you to read and sign a separate consent form. You haven’t committed to take part unless you go on to sign the consent form.  And you may of course opt out of the study at any time. 

A Research Study Investigating Barriers to Self-Management in PCOS

Charys Orr

Coventry University
Email: orrc5@uni.coventry.ac.uk

Information for patients with PCOS and practitioners specialising in the condition

Background to the study:

Over the past few years, there has been a great increase in the awareness of Polycystic Ovary Syndrome (PCOS) as a condition. Many women have become more open about their own condition which has led to more interest in research in general. However, there are still numerous patients who are unsatisfied with their care and the outlook produced by the disorder.

Recent research has identified that a different approach to care called self-management may be beneficial to patients with PCOS. Self-management is an individual’s capability to manage their own symptoms, treatments and consequences that arise from their condition. Approaches of this form aim to help patients improve their quality of life by developing skills that the patients can use themselves to manage a chronic condition.

The aim of this research study is to evaluate the current barriers women perceive to prevent them from engaging in self-management of PCOS and reveal the fundamental concepts that would be needed to develop such a scheme. In order to research this topic, I would like to hear the viewpoints of both women with the condition and healthcare practitioners who treat it and interview them to gain a more in-depth understanding.

Do I have to take part?

If you would like to take part in this study you will need to be at least 18 years old and been officially diagnosed with PCOS for at least 6 months. Alternatively, you could be a health care practitioner who specialises in treating PCOS.

Please read this document carefully to ensure you agree to the terms of the study before acknowledging interest with the researcher. Feel free to ask any additional questions concerning potential involvement in the project.

Potential benefits and risks for taking part:

The main benefit of this study is that its aim is to identify barriers preventing patients with PCOS from taking part in self-management interventions. This project intends to seek out appropriate methods that could be used to develop such a scheme in future work.

There is a possibility that taking part in this study may provoke some degree of emotional or psychological distress if you are recalling particular memories associated with your condition. Please be aware that during the interview you can refuse to answer particular questions or withdraw from the study at any point.

What happens during and after the interview process?

The interviews will last between 30 to 40 minutes in length and can take place either face-to-face in a surrounding that will be convenient and comfortable for you (for example, I can make arrangements to interview you in an open environment you feel comfortable in or at an alternative venue, such as a room at Coventry University) or through telephone calls. I will need to audio record your interview and will seek your permission for this.

After the interviews have been recorded, they will be typed as transcripts. During this process, any data that may be personal or will identify you in any way will be changed eg. names and places. This will ensure that your identity remains anonymous. The interviews will then be analysed and written up.

It is important that you are aware that in the write-up, some direct quotes from your interview may be used. However, all personal details will be changed and so it will not be possible for those reading the analysis to identify you.

The findings of the study will be written up as part of a dissertation for a Postgraduate Health Psychology Masters Degree.

Data Protection and confidentiality:

All interview data, both digital and paper copies, will be strictly confidential. Only I will have direct access to the data you have supplied- all data will be kept on a password protected laptop and will be destroyed after graduation.

Please note that once you have agreed to take part in the study you have the full right to withdraw at any time, without having to explain your reasons. You are free to stop the interview at any time if you do not wish to continue and withdraw your data. Additionally, if having completed the interview you decide that you wish to remove yourself from the study all data will be destroyed by the researcher and not included in the study. Please also be aware that you are not obliged to answer all of the questions posed to you in the interview. If there is a question you would rather not answer please just say and I will move on to the next.

All aspects of this study have been approved by my project supervisor and the ethics committee and Coventry University.

What if things go wrong?

If you have any concerns about the study before or during completion, feel free to contact myself, my supervisor (Dr Carol Percy: c.percy@coventry.ac.uk) or my course leader (Dr Elizabeth Sparkes: aa8163@coventry.ac.uk).

How do I take part?

If you are 18 or older and have had an official diagnosis of PCOS, or  are a health care practitioner who specialises in treating the condition, and would be interested in taking part in the study you can contact me by email: orrc5@uni.coventry.ac.uk, or my supervisor, Dr Carol Percy: c.percy@coventry.ac.uk.

If you would like to take part and provide me with your details, I will contact you shortly. I am also happy to answer any additional questions you may have about the study.

This is the participation information sheet for Charys’s research study. If you decide to take part in the study, Charys will ask you to read and sign a separate consent form. You haven’t committed to take part unless you go on to sign the consent form.  And you may of course opt out of the study at any time. 

PLEASE NOTE THAT THIS STUDY IS NO LONGER RECRUITING.  Please see our thanks to participants.