Women and peer support

Lauren Green, Haemophilia Foundation Queensland Manager, spoke to Suzanne at HFA about HFQ’s work to develop peer support for women.

Growing up with haemophilia in the family, Lauren had been associated with Haemophilia Foundation Queensland (HFQ) since she was a little girl, but it wasn’t until she received a diagnosis herself that she became more aware of the needs of women and girls.

Lauren and women - HFQ

Lauren (right) with women members

HFQ decided to hold an activity that was open to any women affected by a bleeding disorder, whether they had a bleeding disorder, were a carrier, parent or partner. It was a morning tea at a local café and was so successful that it has continued quarterly over the last 7 years.

women having lunch in a cafe - hfq

In a comfortable informal environment, the conversations were open and provided good opportunities for peer support and education.

HFQ has tried a few different types of activities to engage and support women:

Workshop-based activities rather than a sit-down lunch every 6 months.

Massages at community camps are popular with women to relax and also give them personal time separately from their children.

Carer lunches where the carers are provided with support to care for the person with a bleeding disorder while they are at lunch.

What makes an activity more women-friendly? Lauren shared her thoughts:

  • Face-to-face with a relaxed feeling
  • Suiting the timing to women’s commitments
  • Finding a way to come to them, a convenient venue
  • Environments that are children-friendly, eg have a play area for children if you can’t organise baby-sitting
  • Activities that are fun and where women can step right out of the caring role
  • Keep the cost low
  • Treats like a donated hamper door prize or little chocolates
  • A private environment, eg a closed function room or booking out a whole space so you are not sharing it with others
  • Using all communication channels to promote the activities: HFQ magazine, email, sms, social media.
Thank you chocolate daisies - HFQ

The conversations at the women’s peer support activities have had a very noticeable impact on women’s understanding of their bleeding, and many have now followed up with diagnostic testing for a bleeding disorder.

Lauren reflected that women often struggled to discuss their bleeding in other environments. It’s a common sentiment among males that gynaecological discussions are too much information and they ‘don’t want to know about that’, sometimes even in bleeding disorders community groups or in women’s own family.

HFQ activities have been developed to offer private spaces and small break-away groups so that women are not as self-conscious about discussing personal issues.

Conversations about bleeding are often started by more confident community leaders such as Lauren.

Messages are clear and simple:

women showing their paintings - HFQ

Displaying the results of the women’s paint ‘n sip activity

The women’s peer support groups are also a good opportunity to give women the skills and the tools to educate the other health professionals who care for them and may need to be aware of their bleeding disorder.

Using tools like the ABDR Patient Card/emergency card can be valuable and HFA education resources can help to explain and support the women’s experience. GP education sessions, like those run by the Queensland HTC, are also important for getting the message out more widely among health professionals – HFQ sponsors these and are invited to give a presentation on the personal perspective of living with a bleeding disorder.

Thanks to Lauren for sharing her experiences of women’s peer support activities.

Photos supplied by HFQ and reproduced with permission.

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