Women’s use of online health and social media resources to make sense of their polycystic ovary syndrome (PCOS) diagnosis: a qualitative study

Abstract

Abstract Background With the growing availability of online health resources and the widespread use of social media to better understand health conditions, people are increasingly making sense of and managing their health conditions using resources beyond their health professionals and personal networks. However, where the condition is complex and poorly understood, this can involve extensive “patient work” to locate, interpret and test the information available. The overall purpose of this study was to investigate how women with polycystic ovary syndrome (PCOS) across two healthcare systems engage with online health resources and social media to better understand this complex and poorly understood lifelong endocrine disorder. Methods A semi-structured interview study was conducted with women from the US ($$N=8$$ N = 8 ) and UK ($$N=7$$ N = 7 ) who had been diagnosed with PCOS within the previous five years. Transcribed data was analysed using a reflexive thematic analysis method. Results We highlight the information needs and information-seeking strategies women use to make sense of how PCOS affects them, to gain emotional support, and to help them find an effective treatment. We also show how women with PCOS use online health and social media resources to compare themselves to women they view as “normal” and other women with PCOS, to find their sense of “normal for me” along a spectrum of this disorder. Conclusion We draw on previous models of sense-making and finding normal for other complex and sensitive health conditions to capture the nuances of making sense of PCOS. We also discuss implications for the design and use of social media to support people managing PCOS.