Women who are coping with experiences such as infertility or miscarriage receive little psychological support from professional care. This is highlighted in two recent separate studies from the UK and US.
The Burdens of Involuntary Childlessness
The first study by Payne and colleagues (2019) was conducted at Middlesex
University and Fertility Network UK. It replicated a similar 1997 study and examined
the financial, emotional and relationship impacts of infertility (and more
broadly involuntary childlessness due to various reasons), the received treatment
and the satisfaction with professional support.
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The results show that of 796 respondents, 80% had one or more rounds of fertility treatment. Feelings of being sad, frustrated and worried were reported, regardless of whether or not the respondents were receiving fertility treatment. Due to high levels of distress, nine out of ten women felt depressed, for 70% the relationship with their partner became problematic while a significant share of 42% had suicidal thoughts at least once.
The latter happened mostly as a result of unsuccessful treatment outcomes, which were quite common: at least once, over two thirds (68%) failed to achieved a pregnancy, while 31% got pregnant but gave no live birth.
Three quarters of the sample would be willing to have received counselling if it had been free. However, only 45% did receive such help and over half had to bear some costs. In comparison, in 1997 these figures stood at 31% and 88% respectively. This is to add to the fact that over half (55%) of respondents had to pay for at least part of their treatment (eg IVF), with the majority paying over €6,000 (£5,000). Again, in 1997, 75% had to pay.
The authors acknowledge that funded treatment and psychological support are more widely available now than in 1997. Despite this, financial, emotional and relationship negative consequences of involuntary childlessness and treatment are still experienced by many people. In conclusion, the researchers recommend involving all fertility clinic staff in the psychosocial care of patients.
Coping with Miscarriage
Another study conducted by Mercier et al. (2019) at Thomas Jefferson University (USA), explored how women shared their experiences of miscarriage on Instagram after their emotional and psychological needs related to this matter remained unmet.
The campaign #ihadamiscarriage was launched in 2014 by Dr Jessica Zucker, a clinical psychologist based in Los Angeles and specialising in women's reproductive and maternal mental health. Mercier and colleagues conducted a qualitative research study on 200 posts of text and pictures with this hashtag, in which users described their medical and physical experiences of miscarriage, shared their emotions, discussed social and family consequences.
There was a variety of reasons for these women to go online, but they especially needed to find support and to break the silence around miscarriage. By using social media and disclosing miscarriage many users found a way to cope with their experience. According to Dr Mercier, "the extent to which this loss affects women and their families, and the longevity of their grief is a blind spot for clinicians."
Another aspect the researchers uncovered was patients' perspectives of typically defined experiences. One example is recurrent pregnancy loss: for clinicians it implies three miscarriages, but for many patients it starts with two. Dr Mercier highlighted the importance of looking at a clinical problem through this “public health lens” and of social media as a possible coping tool for patients. In general, she emphasised the need for more empathy and respect from the clinicians in such cases.
Payne N, Seenan S, Akker O (2019). Experiences of involuntary childlessness and treatment in the UK: what has changed in 20 years? Human Fertility. 1-8. 10.1080/14647273.2019.1687946
Mercier R. et al. (2019) Instagram Users' Experiences of Miscarriage. Obstetrics & Gynecology. [Epub ahead of print, December 5. 10.1097/AOG.0000000000003621]
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