Seize the future

Patient online survey

We conducted an online survey to know more people’s support needs in coming to terms with their situation. The responses provided by participants gave us important information:

Acceptance of an online app

One fifth of people would use an online app. There was a general agreement that easy access to information and support is useful and that online support was perceived as an additional source of support when interpersonal (counsellor, fertility healthcare providers, friends) support is not available or is insensitive. Participants who would not use an online app raised issues of privacy and lack of clarity about its usefulness.

Main challenges faced by people who do unsuccessful fertility treatment

The main challenge people stated were intense feelings of grief and loss and the inability to let go of the child desire, which makes them feel stuck in life. Another important issue was the feeling of social isolation, followed by the inability to restructure their lives around other life projects or goals. Another difficulty was coping with social interactions and the meanings and expectations society builds around parenthood.

Features that should be incorporated in the online app

Participants wanted to receive support to cope with the loss and grief, to reach closure regarding treatment, to cope with the implications of being childlessness (on a daily basis) and to plan a new meaningful life. Addressing communications and sexual issues within the partnership were considered important but less of a priority.

Tips and exercises, information and personal stories were highly valued while links to other websites, support groups and other materials came lower in the hierarchy. Other things considered useful were mindfulness training and a mood diary (mood, triggers, coping strategies).

Information about pursuing other parenting alternatives (e.g. adoption) came last in the hierarchy, being even considered counterproductive or directly rejected by some.

Features that should be avoided in the online app

Participants did not want to be exposed to stories of successful IVF treatment, pictures of babies, patronising and sentimental language, forcing choices on individuals, information about alterative routes to parenthood, comments aiming at decreasing the importance or joys of parenthood, adds for fertility clinics and assumptions about how people became childless.

‘I think this would be just great, just looking at what you did, it gives you a bit of a structure, it helps you to understand… where am I supposed to be [in my grief process]… cause everything gets so muddled at the end…

'I think it would have definitely helped me, I wished I had something like this..’