A fresh approach to studying the impact of a fertility-damaging condition on women’s quality of life has been completed by a University of Derby post-graduate research student.
Sophie Williams, 26, explored how women with polycystic ovary syndrome (PCOS) perceive the impact of the condition on their lives via the use of a photographic diary known as ‘photovoice’, making it the first PCOS study of its kind.
Participants’ feedback focused on themes such as symptom management, feminine identity and relationships and Sophie hopes her research will help healthcare workers to further understand the impact of PCOS on those who have it.
It is estimated that around one in every five women in the UK has polycystic ovaries, although more than half of these people show no symptoms.
When symptoms do show, they can include hirsutism (excessive hair on the body and face), insulin resistance, infertility and obesity. It has been suggested that PCOS has a greater impact on women’s psychological wellbeing than illnesses such as asthma, epilepsy, diabetes, back pain, arthritis and coronary heart disease.
Derby-based Sophie herself has the condition, as does her elder sister, making it a matter very close to her heart.
She explained: “I was driven to do my PHD in this subject by my knowledge and experience of the condition, although I don’t experience the symptoms as much as some people do.
“PCOS can have a massive negative impact on people and my research project found that some participants feel as though they are not supported by healthcare professionals.
“And the fact that women are treated symptomatically can be a problem as it is only addressing one problem at a time, not the whole condition. This can infiltrate every part of a person’s life and leave them feeling socially isolated.
“One woman even said, ‘(the) doctor only really offers to address one symptom at a time – it’s like you can either not look like a monkey under your clothes, or have a greater chance of starting a family later. Pick one’.
“However, some participants perceived their situation in a positive way and described how certain situations or behaviours helped them to develop a more positive outlook. One said swimming helps her to feel that she is ‘combating’ her PCOS and in turn this helps her to feel more positive.
“I am hoping that my research will increase awareness of the condition and at the very least help develop practitioners’ understanding of PCOS.”
Sophie says the ‘photovoice’ method has never been used before in women with PCOS, and the study itself is one of only a handful of qualitative pieces that currently exist.
‘Photovoice’ is able to uncover descriptive information and can be widely adapted to fit the needs of research. Sophie recruited participants via a post on the website of a popular PCOS charity network called Verity.
A study pack, containing a disposable camera, notebook, consent form, letter of instructions and an in-depth information sheet, was sent to participants, who were asked to take photographs of anything they felt related to their PCOS and its impact on quality of life.
They were also asked to write a diary entry for each photograph taken in the notebook. The entries were analysed using inductive thematic analysis and three major themes emerged: ‘control’, ‘perception’ and ‘support’.
Sophie added: “Although previous research has discussed similar themes to those of ‘symptom management’ and ‘feminine identity’; this research is the first to present the role and importance of support through online methods, such as social networking websites, for women with PCOS.
“I also discovered the supporting role that pets play in the lives of women with PCOS. Overall, this study allows for an in-depth insight into the experience of living with PCOS which may aid in furthering understanding of this condition and will provide new knowledge for health professionals.”
Sophie’s research is being published in the Journal of Health Psychology.