Abstract
BackgroundPolycystic Ovary Syndrome is a common, chronic condition which affects women living with the condition both physically and psychologically. Social support may be beneficial to sufferers in coping with chronic conditions and the Internet is becoming a common place for accessing social support and information. The aim of this study was to consider the experiences of women living with Polycystic Ovary Syndrome who access and participate in an online support group discussion forum dedicated to issues surrounding this condition.MethodsFifty participants responded to a series of open-ended questions via an online survey.ResultsThematic analysis revealed a number of empowering and disempowering experiences associated with online support group participation. The empowering processes reported by members of the group included: Connecting with others who understand; Access to information and advice; Interaction with healthcare professionals; Treatment-related decision making; Improved adjustment and management. In terms disempowering processes, only two were described by group participants: Reading about the negative experiences of others and Feeling like an outsider.ConclusionsFor women living with Polycystic Ovary Syndrome, participation within an online support group may help to empower them in a range of important ways however, there may be some disempowering consequences.
Highlights
Polycystic Ovary Syndrome is a common, chronic condition which affects women living with the condition both physically and psychologically
Recruitment Participants were recruited from a UK-based online support group, for women affected by Polycystic Ovary Syndrome (PCOS)
For women living with PCOS, participation within an online support group appears to offer various benefits through interacting with other sufferers
Summary
Polycystic Ovary Syndrome is a common, chronic condition which affects women living with the condition both physically and psychologically. Polycystic Ovary Syndrome (PCOS) is a chronic disorder affecting women of reproductive age, diagnosed by the presence of at least two of the following: the presence of numerous, small ovarian cysts; menstrual cycle disruptions; or clinical signs of hyperandrogenism [1]. Despite being the most common endocrinopathy disorder, believed to Psychological research has largely centred around the psychosocial impact of PCOS and it is perhaps unsurprising, given the scope of health problems and unpleasant physical manifestations of the condition, that PCOS and its related symptoms have been found to be associated with poorer quality of life and increased psychological distress in sufferers [10,11,12]. There exists some disagreement as to which symptoms produce the most negative impact in women with PCOS [8,14,15,16]
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