These resources aim to deal with some of the problems experienced by Australian women with bleeding disorders. HFA’s consultation has found that many women have been treated in the community, for example, by a GP rather than a Haemophilia Treatment Centre. However, most doctors have not received training about managing bleeding disorders. As a result many women have had problems with diagnosis and referral, and had bleeding problems with surgery, medical and dental procedures, with menstruation (periods) and after childbirth. Many women also spoke about their difficulties in being ‘taken seriously’ by health professionals, as some of their non-haemophilia health professionals (eg, general practitioners, surgeons, dentists) didn’t know that women can have bleeding disorders. This is similar to the experience of women with bleeding disorders in other developed countries such as Canada.
WHO COMPLETED THE SURVEY?
37 people completed the survey.
They were from all states and territories except Northern Territory and Tasmania (3 did not disclose where they lived).
72% were 31-54 years of age
WHAT DID THEY THINK OF THE BOOKLETS?
- introduction to bleeding disorders in females
- working with HTCs and other health care practitioners
- common reactions to diagnosis
- where to go for support
86% had seen the Snapshot of bleeding disorders in females
66% had seen Finding out you carry the gene
48% had seen the print version
66% had seen the online version
85% thought they were very or extremely useful
72% thought the design and layout was very good or excellent
What did they like?
- Informative, easy to read
- First information they had seen written for females
- Good reference tool to share with others
Suggestions for improvement
- More detailed information
- More information on VWD, rare clotting factor deficiencies
- Simple summaries for low literacy
‘Great layout. Easy to peruse.’
‘People can refer to them again - conversations can be forgotten or misunderstood. When sharing information with others who are new to clotting factor issues they feel safe and comfortable and can find answers but also questions to ask health professionals.’
‘My daughter was happy there was something that was just for females.’
'A lady found it in my work waiting room and was so thrilled to have something concrete about herself.'
'Thank you for producing a quality resource for women and their families to use.'
WHAT DID THEY DO WITH THE BOOKLETS?
68% passed booklets on to other family members
18% showed booklets to their health professionals
‘Was good showing my family.’
‘To educate carriers in the family who are considering starting a family who hadn't been informed about their considerations or connected to an HTC yet.’
‘So that we are not alone and that we suffer as well.’
‘Acknowledging that these symptoms are real and do affect the person's life is very helpful. It is also helpful if they are able to talk about them to their doctors and to get some help with their symptoms.’
What was the impact for them?
‘The desire to educate more family members/well wishers/school educators.’
‘Spurred me on to find out more info from the doctors re children and starting a family.’
‘More info and evidence of what I say is not rubbish.’
‘I have sought to talk with some others who I know have bleeding disorders to ask their advice.’
‘As a male, a broader understanding.’
HFA has nearly completed two of the next resources for The Female Factors project:
- Telling others (family, friends, work, insurance, travel)
- Female factors – a booklet for teenage girls and young women.
We are using the feedback to develop the content and layout:
- More information on VWD, rare clotting factor deficiencies, inherited platelet disorders
- Boxes with summary information
- More information on key issues for women and girls with bleeding disorders.
Other resources in the pipeline:
- Symptoms, care and treatment
- Family planning, pregnancy and birth.
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:
Women’s resources – Suzanne at HFA
T: 1800 807 173
Teenage girls/young women – Kassy at HFA
T: 1800 807 173