PODCAST: Patient Support and Stigma: Patchwork, not the Quilt
Join our Health team and Ruth from the Miscarriage Association UK in this podcast from The Nursery Research & Planning.
Supporting people who experience pregnancy loss and fertility complications doesn’t always take the shape that we think.
Organisations sometimes aim to provide all encompassing support; the bigger the stigma, the bigger the aim can seem. We discover that the ‘small things’ matter most, they’re not small things at all.
Immersing ourselves in what people going through this are really looking for, we can understand that those within this community often gift to others what they most seek to receive.
We discovered that pregnancy loss is one of the most talked about topics in women’s health forums.
“Most interaction online is about people’s emotion and complaints. It’s rare that online discussion doesn’t adjust itself, so we (at the charity) need to be quiet and patient so that support can be maintained within the community, and we don’t become ‘the teachers at the front’.”
As Ruth describes what people are experiencing and the support they look for, the role and nature of online community support becomes clear. The anonymity online and 24/7 access make communities a perfect tool for people experiencing pregnancy loss or fertility complications.
People find catharsis and solace in knowing we are not alone and that others have experienced what we have gone through. Platforms like the Miscarriage Association play a valuable part in connecting people who are experiencing pregnancy loss and fertility challenges following miscarriage; through education, support and a space to tell their story.
Ruth shares her experience that,
“it’s not what you say, it’s how you listen that is most important. Most of our community want others to say, “I’m sorry for your loss”… and then to listen.”
Our 3 key learnings from this podcast session that can be applied to broader patient support areas:
- There is no ‘standard’ – everyone is unique and needs will be different, and across time.
- Being present for someone can be more important than being comforting. What friends and family say can be kindly meant but sometimes hurtful. What most want is an explanation of terminology to better understand the consultation, diagnosis and decisions they are asked to make.
- Most interaction is focused on emotions and negative experiences / complaints and others will contribute around their own experiences – so shared experiences become crucial.
Want to know more? Get in touch by emailing health@the-nursery.net
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You can contact the The Miscarriage association here