Introduction
Research has shown that women struggling with infertility experience the same level of depression as women with Cancer, HIV and heart disease (1), and 42% of respondents in a recent Fertility Network survey reported having felt suicidal at some point (2).
If you apply that percentage to the number of women undergoing IVF in any one year, over a million women worldwide potentially feel suicidal every year due to infertility. And that figure does not include those who are not currently receiving treatment and who cannot afford to have treatment – hence the percentage number including this group would be much higher than 42%, especially in the case of couples who have very little support and struggle with cultural taboos.
Patients who are struggling to conceive report feelings of depression, anxiety, isolation and loss of control. The inability to conceive naturally can cause feelings of shame, guilt and low self-esteem. These feelings may lead to varying degrees of depression, anxiety, distress and a poor quality of life.
Figure: The psychological impacts of fertility problems and treatment
This shows the huge emotional trauma caused by infertility and explains why these women may struggle with the intensity of treatment. It also demonstrates why providing a high level of emotional support is critical for helping patients cope whilst going through fertility treatment.
Studies have shown that ‘patients who undergo assisted reproductive treatment (ART) are at significant risk of experiencing psychiatric disorders and it is important to recognise, acknowledge and assist these patients as they cope with their infertility diagnosis and treatment.’ (3)
The studies concluded that 25% to 60% of infertile individuals report psychiatric symptoms and that their levels of anxiety and depression are significantly higher than in fertile controls (3).
Patients spend a significant amount of time at their fertility clinic, and it is important that they receive emotional support throughout treatment. Research has shown that ‘1 in 10 patients chooses not to start treatment due to a number of reasons, including rejection of treatment, personal reasons, relational problems, financial issues, and psychological burden of treatment.’ (4) (5)
It is not enough to just provide access to a psychological counsellor. Patients should be encouraged to access appropriate support and should feel supported by all clinic staff at every point of contact.
Emotional support is subjective – all patients cope in different ways and are affected by infertility in different ways. Studies show that the longer patients have been trying to conceive and undergoing ART, the more their depression increases, the more suicidal thoughts they express, and they will need different levels of support.
Those most in danger of experiencing high levels of distress and suicidal feelings were those who had unsuccessful treatment, who spent longer trying to conceive, who experienced some relationship strains and who had less support from friends and family.’ (2).
The ESHRE guidelines study concluded that ‘Providing routine psychosocial care is associated with or has potential to reduce stress and concerns about medical procedures and improve lifestyle outcomes, fertility-related knowledge, patient wellbeing and compliance with treatment.’ (5).
A survey by the HFEA (6) of over 1000 patients and their partners on the service they received at their clinic, found that:
- Improving patient satisfaction is likely to have the greatest impact on overall satisfaction with the fertility process as a whole.
- Many spoke highly of the healthcare professionals, yet some felt that the healthcare professionals lacked empathy and that the process felt rushed.
Whilst emotional care in clinics is good, there is still work to do in terms of increasing the emotional support they offer patients, and their understanding of the emotional impact on patients and how they can better support them.
Clinics should recognise that if they are supporting patients in every communication they have with them, those patients will feel more valued and trusting of the clinic. Patients will be able to cope more effectively with treatment and will return to their clinic for further treatment.
Discussion and Recommendations
Emotional support is the responsibility of all members of staff.
- It is important to create a culture within the clinic where all staff understand their responsibility to support patients at all stages of their treatment and at every appointment. There should be a whole team approach to support that includes all members of staff, from receptionists through to consultants. Patient support should not just be the responsibility of the counsellors. Everyone should understand their responsibilities in supporting patients – what it includes and why it is important.
- ESHRE guidelines on patients’ preferences state that ‘fertility staff should be aware that patients value how staff relate to them, staff showing that they understand the emotional impact of infertility, that both partners are involved in the treatment process and the decision-making, receiving psychosocial care from sensitive and trustworthy members of staff and receiving care for their direct needs based on their medical history.’ (5).
Provide staff training on the emotional impact of infertility and how to offer more emotional support.
- Staff need to have a good understanding of how patients feel when going through treatment so that they can empathise with their patients and support them effectively.
- Fertility patients have clear preferences about the care they receive – fertility staff should know these preferences and incorporate them into their service delivery.’ (5)
- Clinics should provide staff training on the emotional impact of infertility, empathy and patient support to ALL members of staff. Refresher training and new staff induction on emotional support should also be provided. The ESHRE GDG concluded that ‘Fertility staff must inform themselves of the specific needs patients experience at different treatment stages and tailor psychosocial care accordingly.’ (5)
Emotional support for patients is important at all stages of treatment, from the very first to the very last point of contact they have with the clinic.
- Every point of contact, for every patient, with every staff member should be supportive. It is important for patients to feel safe and supported from their first point of contact with a clinic to ensure that they feel comfortable starting treatment. Research shows that patients will choose their clinic based on their first impressions. They will choose not to start treatment if they do not feel that they can cope with it and they will stop treatment if they do not feel supported.
- The 2018 HFEA Pilot study found that 36% of patients chose a particular clinic for treatment based on a good initial impression of the clinic and staff. (6)
All staff to provide empathic patient-centred care and understanding throughout the patient’s time with the clinic.
- ESHRE guidelines state that ‘receiving patient-centred care is associated with better patient well-being, positive staff characteristics (communication, respect, competence, involvement and information) are associated with better patient well-being and positive clinic characteristics (information, competence of clinic and staff and continuity) are associated with better patient well-being.’ (5)
- Deliver clear, supportive and timely communication in patient-friendly language.
- Provide patients with one consistent point of contact at the clinic to provide consistency, avoid patients repeating their details to different members of staff and to make patients feel important.
Provide information on the support services available and clearly explain the benefits of support.
- Offer a range of support services to allow patients to choose the most appropriate for them, with different levels of support to suit different patient needs, and provide 24-hour support. Clinics should actively encourage patients to access additional emotional support, especially counselling, and signpost the services regularly. It is also helpful to provide information to take away, in the patient’s own language, so that patients can re-read it in their own time.
- Provide individualised support information, relevant to the patients’ circumstances – same sex couple, solo parenting, donor recipients.
- ESHRE guidelines state that ‘patients value the offer of specialized psychosocial care (infertility counselling or psychotherapy) when they have expressed a need for emotional support and the provision of information about psychosocial care options (contact details of support groups, online support options, access to counselling). (5)
- Support services could include infertility counselling, support groups, buddy systems, patient information sessions, leaflets on coping mechanisms and signposting local/national resources (HFEA, FNUK, Resolve). Clinics could look at forming links with trusted support services to expand the support available if there are no in-house teams. A 2016 Fertility Network study found that 17% of respondents had attended a support group but 52% would have liked to attend had there been one. (2)
Create links with local GPs to start the support earlier.
- Work is needed to educate and inform GPs so that they are more able to support patients. Care plans should be drawn up around continuous tailored care and improved communication. ‘A good start to the treatment process is crucial; the qualitative phase suggests that negative experiences at this stage can have a negative impact on patients and can make them question whether the rest of the fertility experience will be difficult / challenging.’ (6).
Show an interest in patients as persons and treat them as individuals.
- “The key driver model shows that the main drivers of satisfaction are the “interest shown in you as a person”, the quality of counselling and the coordination and administration of treatment. Improving patient satisfaction for this measure is likely to have the greatest impact on overall satisfaction with the fertility treatment process as a whole.’ (6).
Create a robust feedback process on patient experience, including emotional support, with a clear process for acting on feedback.
- Clinics should create a process that ensures that patient feedback on emotional support is monitored, with feedback acted upon and discussed in full team meetings.
Figure: Schematic representation of the guideline approach for the provision of psychosocial care tailored to specyfic infertility and assisted reproductive technology (ART) treatment stages and patient needs.
ESHRE guideline: routine psychosocial care in infertility and medically assisted reproduction (4).
Before Treatment
Provide patients with a clear understanding of the IVF process to allow them to make informed decisions on treatment. Give them the opportunity to ask questions and discuss their concerns, without passing judgement.
ESHRE GDG recommends that ‘fertility staff should provide preparatory information about medical procedures because it decreases infertility-specific anxiety and stress and that staff offer patients the opportunity to discuss uptake or not of recommended treatment and receive decisional support to deliberate their choice.’ (5)
- Provide patients with written/online information on the process to take home to re-read after the appointment. This information should be clear, concise and written in a patient-friendly manner. It should be provided in the patient’s own language.
- ‘Sometimes the amount of information received in the consultation can be overwhelming, and it would be helpful to have hard-to-access information recorded to take away, either in note form or as a voice recording.’ (6)
- Provide individualised information on treatment for the patients’ specific circumstances – donor recipient, surrogacy, same sex couples, solo parents.
- Provide patients with clear information on success rates, in a clear and easy-to-understand format. The HFEA survey found that ‘not being informed of success rates left patients feeling confused, with some saying it made the process harder to comprehend.’ (6)
- Providing patients with one point of contact throughout treatment will build trust and reduce stress and repetition for the patient.
Provide information to support patients in making lifestyle changes that will aid their fertility, health and emotional wellbeing.
- ESHRE GDG recommends ‘providing patients with information about lifestyle behaviours that may negatively affect their general and reproductive health, and support patients in changing lifestyle behaviours that negatively affect their general and reproductive health, as well as their chances of treatment success.’ (5)
Provide patients with one point of contact throughout treatment.
Use SCREENIVF to identify patients at risk of developing emotional problems and help them to access emotional support.
- THE ESHRE GDG recommends that fertility staff use the SCREENIVF before the start of each treatment cycle to assess the patient’s risk factors for emotional problems after the cycle. ‘Some patients are more vulnerable to the demands of treatment and need additional psychosocial care or specialised services.’ (5)
- By identifying the patients who may develop emotional problems, staff can be watchful for signs and encourage them to access emotional support. However, it is important that all patients are offered emotional support to ensure that everyone who needs it knows how to access it.
During treatment
Be aware of the points of treatment where patients are most anxious and incorporate more support into that part of the treatment process.
- ESHRE GDG found that ‘emotional stress fluctuates throughout the cycle, with the peaks when patients are awaiting results – egg retrieval, embryo transfer and the waiting time before the pregnancy test.’ (5)
- Put processes in place to have more contact with patients at key points of treatment as outlined above (calls, text message to check in with patients).
- Remind patients of the support services available and how they can access them.
- Allow more time in appointments at key points of treatment for patients to ask questions and get reassurance.
Encourage patients to find ways of coping during treatment and provide information on active coping tools to deal with the stress of being overwhelmed and the grief of infertility.
- ESHRE Guidelines state that ‘The use of meaning-based coping (thinking about the fertility problem in a positive light, finding other goals in life) seems to be associated with lower fertility-specific marital and social distress, and the use of active coping (goal-oriented problem solving, thinking rationally about the problem) seems to be associated with lower infertility distress (5).
Talk through any changes to their treatment plan and provide patients with the opportunity to talk about treatment with key members of staff.
- Patients need reassurance on changes (why treatment is changing, and what it could mean for the outcome) and want to feel informed about the treatment process.
After treatment
After a failed cycle
Emotional support is most important at this stage of treatment, regardless when the failure occurred.
Verhaak et al, 2007, found that ‘patients experience high emotional distress when they are informed that the treatment was unsuccessful, and that 1 to 2 in 10 women experience clinically significant levels of depressive symptoms.’ (5)
‘The further into treatment a patient goes, the more often they display symptoms of depression and anxiety. Patients with one treatment failure had significantly higher levels of anxiety, and patients with two failures experienced more depression when compared with those without a history of treatment.’ (3)
Support for patients after a failed treatment cycle
Remind patients of the availability of an infertility counsellor, the benefits of their help and encourage them to access this support. The ESHRE GDG recommends that ‘fertility staff refer patients who, after unsuccessful treatment, experience or are at risk of experiencing clinically significant psychosocial problems to specialised psychosocial care (infertility counselling or psychotherapy).’ (5).
- Maintain contact with patients whilst waiting for their follow-up appointment – build points of contact with patients into the process after a failed cycle – for example, a wellbeing call, text message as a reminder of the support available. This will create a better experience for your patients and they will be more likely to continue treatment with you.
- Keep the waiting time between a failed cycle and the follow-up appointment as short as possible to reduce patient anxiety.
- Make time in the follow-up appointment for patients to ask questions and provide the opportunity for them to speak to the embryologists for more information on their specific case.
The care and support you provide will dictate whether they want to start another cycle of treatment with you. Patients may move clinics or stop treatment if the care they receive is inappropriate. ‘Patients also cite negative experiences of care as a reason for discontinuing fertility treatment’ (4).
A study on the link between stress and infertility found that ‘the more depressed the infertile woman, the less likely she is to start infertility treatment and the more likely she is to drop out after only one cycle. Researchers have also shown that despite a good prognosis and having the finances available to pay for treatment, discontinuation is most often due to psychological reasons.’ (3) 51.
After a positive test result
Continue to offer support to patients when they get a positive pregnancy test.
Many women still feel anxious that something will go wrong with the pregnancy. ‘Women who have conceived with IVF/ICSI may experience more pregnancy-specific anxiety than women who conceived spontaneously.’ (5)
- Refer them to more psychological support if staff feel they are at risk of experiencing clinically significant psychosocial problems after successful treatment.
- Continue to offer emotional support to patients after a positive result in line with the continued medical care before referring them to the maternity services.
- ESHRE GDG recommends offering patients the opportunity to discuss their pregnancy concerns.