Over the last couple of decades, social media has had a huge impact on the way people communicate about health issues, with the rise of 'Dr Google' as people search for health information and support online and a proliferation of forums and blogs on all aspects of health and wellbeing.
Many people, especially those experiencing stigmatising conditions, choose to share these experiences and seek support online where (perceived) anonymity gives rise to open discussion of sensitive topics, such as infertility. Several studies have shown that writing about health can be beneficial for both physical and mental wellbeing (1). Moreover, if used sensitively and ethically, infertility blogs can also give a unique insight into the experience of struggling to conceive and be used to improve patient care.
A study of over 20 bloggers, undertaken as part of my PhD thesis, has provided insight into many aspects of the infertility journey, including views of risk, effects on personal relationships and identity, and how the process of infertility treatment is experienced (2). Interestingly, in this study of language, one of the key issues faced by both patients and practitioners is communication itself.
Almost all of the bloggers reported problems with communication, whether that was face-to-face, phone contact or written information, which often left patients feeling either patronised or overwhelmed. For example, one writer refers to 'the doctor taking us through the process in elaborate, terrifying detail' while another describes the novelty of being talked to 'as an adult with an IQ above room temperature'.
Many of the bloggers had surprisingly low expectations of conversations with medical staff, expressing surprise when they communicated well and treated them as a 'real person' or 'an intelligent adult'. In contrast to the idea of 'doctor knows best', the expectations of poor communication also leads to a sense of mistrust around the information patients are given by doctors.
When it comes to knowing your IUI, intrauterine insemination, from your ICSI, intracytoplasmic sperm injection, the bloggers often look to each other for support, for example, asking for lists of questions and recommendations of treatment from the blogosphere. The idea of the expert patient is not new and can be very positive, leading to well-informed patients able to deal with the complex mountain of information sometimes involved in healthcare choices.
However, several of the bloggers expressed a higher level trust in other members of the online community, who are also going through the experience of infertility, than in medical professionals. This faith in online information can lay individuals open to the risk of misleading or inappropriate information being shared, and this is a key concern of medical staff when it comes to online support mechanisms.
It is by no means all a gloomy picture; nearly 75 percent of communication is described as taking place with nurses and, while they are sometimes seen as gatekeepers in terms of access to information and consultants, there are also some very positive experiences in the blogs. Nursing staff are portrayed as a major source of support and terms such as 'lovely', 'supportive' and 'caring' are frequently used in descriptions of communicating with nurses, who are praised for their ability to put patients 'at ease'.
A particular trend of positive communication is that those who are further along the fertility treatment path
As the HFEA, Human Fertilisation and Embryology Authority seek to develop improved online communication, which is more 'patient friendly', insights from patients themselves, such as the bloggers in this study, could be one pathway to doing so.