What is The Female Factors?
The Female Factors is the HFA women and girls 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, etc who provide their care.
There are several resources, some introductory, and a series of more detailed information resources on specific topics. They include personal stories and tips. Some are for adult women and others are for young women and teenage girls. The resources cover topics related to carrying the gene for haemophilia and living with a bleeding disorder:
Published so far:
- A snapshot of bleeding disorders in females
- Female factors: information for young women
- Haemophilia testing in women and girls: a guide (simpler version)
- Haemophilia testing in women and girls: your questions answered (comprehensive version)
- Haemophilia: finding out you carry the gene
- Telling others
- Family planning, pregnancy and birth
- Living well: symptoms, treatment and care
What do people think about the new resources? Read the evaluations:
WHY THE NEED?
What are the experiences of women and girls affected by bleeding disorders?
HFA’s consultation has found that many have been treated in the community, for example, by a GP rather than a Haemophilia 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. (1,2)
For these women, feelings of isolation are common.
Read more about the findings from the HFA women and girls project consultation:
OTHER HFA AND FOUNDATION WORK
As a result of this consultation, HFA has integrated basic information for women and girls into our general information resources:
- Understanding haemophilia – chapter 2 in Haemophilia: a guide for parents of a newly diagnosed child (2017): explains inheritance, haemophilia in girls and why bleeding symptoms occur in females
- Haemophilia booklet (2023): updated information on carrying the gene and haemophilia in females, inheritance, genetic and factor level testing, family planning, pregnancy and childbirth, treatment
- Von Willebrand disorder booklet (2010): section on special issues for women and girls over their lifetime
- Living with mild haemophilia: a guide booklet (2011): section on special issues for girls and women.
To support women and girls to feel more connected, HFA proactively sources and publishes women and girls’ personal stories about living with a bleeding disorder:
- Women’s personal stories (published in National Haemophilia)
- Girls’ and young women’s personal stories (published on Factored In)
Women’s peer support
Many State and Territory Haemophilia Foundations provide information sessions and peer support groups specifically for women and girls.
Information sessions are developed in collaboration with their local Haemophilia Treatment Centre team and outcomes of what is learned about the role of women, their needs and preferences, and the benefits of connecting with each other can be very exciting.
Read about the local Foundation peer support groups and information sessions for women:
- Women and peer support (HFACT)
- Women and peer support (HFV)
- Women and peer support (HFWA)
- Carrying the gene workshop (HFQ)
WANT TO BE INVOLVED?
You can contribute to the project by joining the HFA women and girls review groups:
- Tell your story and have it included in the new resources – it can be anonymous if you prefer – and you can write your story yourself or be interviewed over the phone
- And/or comment on the draft resources.
Contact Suzanne at HFA on email@example.com
1.Haemophilia Foundation Australia. Women and bleeding disorders project report. Unpublished report, Melbourne, 2002.
2.Renault, NK, Howell, RE, Robinson, S, et al. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011;17:237-245.
3. Hermans C, Kulkarni R. Women with bleeding disorders. Haemophilia. 2018;24(Suppl. 6):29-36.