No 217 March 2022
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Female Factors survey 2021
Suzanne O'Callaghan is HFA Policy Research and Education Manager
In August 2021 HFA undertook an evaluation survey of our two young women’s education resources - Female Factors - information for young women with bleeding disorders and Sport and exercise for girls and young women with bleeding disorders. We are working on the next The Female Factors resources and want to understand what has worked well and what improvements to make in the future.
These resources are part of the HFA women and girls The Female Factors project. The project is developing specific information resources for Australian women and girls affected by bleeding disorders to:
- Increase their understanding of their bleeding disorder, treatments and strategies to manage it
- Help them to feel more connected with each other by sharing personal stories and tips with others in similar situations
- Develop high quality, evidence-based information that they can show to other doctors, nurses, dentists, physiotherapists, etc who provide their care
WHO COMPLETED THE SURVEY?
We only had a small response, but their answers provided valuable insights. Our thanks to everyone who did the survey
26 people (24 female/2 male) completed the survey
From all states except ACT and NT (1 did not say where they lived)
62% had haemophilia or carried the gene, 27% had VWD, others had rare clotting factor deficiencies, inherited platelet function disorders or acquired haemophilia, or were parents.
12% were 18-30 years of age
38% were 31-44 years of age
50% were 45 years and over
Most had a bleeding disorder or carried the gene.
20% were parents; 27% were family/friends; 8% had a professional interest
WHICH RESOURCES HAD THEY SEEN?
96% had seen Female Factors: information for young women with bleeding disorders
35% had seen Sport and exercise for young women
- Information about bleeding disorders in females for young women
- Working with HTCs and other health care practitioners
- Personal stories
23% had seen the print version
- How young women with bleeding disorders can best participate in sport and exercise
- Managing risks, periods, dealing with injuries
- What to tell your coach or club
65% had seen the HFA website version
8% had seen the Factored In website version
31% had seen the online PDF version
WHAT DID THEY THINK OF THE RESOURCES?
63% thought they were very or extremely useful
75% thought the design and layout was very good or excellent
61% thought the stories and tips were extremely or very valuable
What did they like?
- Easy to read, age appropriate, informative
- Attractive design
- Specifically about females, explained the difference to the male experience
- Feel more connected with stories
What could be improved?
‘I think the information was great. Not sure if needed improving at this point.’
- Promote the resources more
- More variety in the images
- Shorter and longer versions for diverse readership
- Handbag size
‘Age appropriate, not condescending.’
‘Easy to read and comprehend. It helps me to feel validated in my life experiences with the
disorder. Knowing there are other people particularly women experiencing the same things.’
‘They provided a simple explanation for things. I really appreciated the inclusion of the
information that women can have haemophilia despite having 2 X chromosomes. I have
been told so many times by doctors who know nothing about bleeding disorders that I don't
have haemophilia because I am female even though my levels are lower than my Dad's who
is a Mild Hemo.’
‘Diversity, make sure women of all shapes and sizes, heritage and beliefs are represented in
‘We should be proud of these resources and use them as much as possible.’
‘Next stage to have some interactivity... social media posts by topic driving access to
specific sections of the publication, then a link back to socials to start a conversation/sharing.’
WHAT DID THEY DO WITH THE RESOURCES?
50% had passed these resources on to others – health professionals, family/friends, colleagues
Why? To educate them
‘They didn't know there were updated resources produced for women/girls.’
‘It was relevant to my family - my niece carries the gene.’
‘To help educate people it's not just males that have haemophilia.’
‘To educate my mother, the grandmother of a girl with haemophilia, to give her more of
an understanding about the condition in black and white.’
HFA is working on the next two resources for The Female Factors project:
- Haemophilia testing in females – factor level and genetic testing
- Family planning, pregnancy and birth.
We are using the feedback to develop the content and layout:
- Short/simple and longer/more detailed versions of the haemophilia testing resource
- The short and simple version will be handbag size (A5)
- Designed as an education tool both for women with bleeding disorders and their families and for others who are new to bleeding disorders
- Continuing to include personal stories and quotes
Promoting the resources is essential:
- Linking resources more visibly on the HFA and Factored In websites
- Investigating new ways to promote the resources on social media.
And we are always looking for women, teenage girls and parents of girls who are interested in contributing to the content with ideas or personal stories or reviewing drafts of the resources.
If you would like to be involved, contact Suzanne at HFA:
T: 1800 807 173
Sport & exercise
Women & girls
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Date last reviewed: 14 March 2022