No 190 June 2015
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Carrying the Gene Workshop
DESDEMONA CHONG AND MAUREEN SPILSBURY
Desdemona Chong is the Advanced Clinical Psychologist and Maureen Spilsbury is the Advanced Social Worker Haemophilia at the Queensland Haemophilia Centre
For Haemophilia Centres and State/Territory Foundations, keeping women who carry the gene up to date with the latest on haemophilia genetics and giving them opportunities to meet and connect with each other is an important part of the education agenda. Information sessions and workshops are a very effective way to achieve this.
IVF Australia genetic counsellor explaining IVF to women who carry the gene at a recent HFNSW information session
In this article, Mona Chong and Maureen Spilsbury reflect on what was learned and what is planned as the next steps following the workshop for women who carry the gene in Queensland.
The Queensland Haemophilia Centre (the Centre), together with support from the Haemophilia Foundation Queensland (HFQ) and funding from a Changing Possibilities in Haemophilia® Grant by NovoNordisk, recently organised a workshop for women who carry the severe haemophilia gene (women carriers).
WHY WE DID IT
Because much attention has been placed on men with haemophilia, women carriers often become a neglected group in the haemophilia community. As a result, their needs may not be well understood and their voices hardly heard. In order to provide a better service to women carriers, the Centre started planning for this workshop in late 2014, with the aim of providing a safe and confidential environment where women can openly share their unique experiences with one another.
PARTICIPANTS CAME FROM EVERYWHERE!
Even with a mighty storm forecast where people are told not to travel unless absolutely necessary, a group of 25 women ranging in ages from their 20s to 70s heroically turned up for the 8-hour workshop on 1 May 2015. The women came from geographically diverse locations starting from Casino in Northern New South Wales all the way up to Cairns in far north Queensland. The strong turnout demonstrates how keen these women who carry the severe haemophilia gene were to come together in such a setting.
The program was split into two parts. The first part was interactive in nature. There were small and large group discussions and heart-to-heart sharing of personal experiences by women who were at different stages of their journey. The second part of the day consisted of presentations by invited medical experts about genetic counselling, IVF options and haemophilia-related updates.
In the first part, participants were broken up into groups according to their life stage:
- Women who do not yet have children
- Women who have children with haemophilia
- Grandmothers/women of adult children who have seen the evolution of haemophilia treatment over decades (probably the most experienced group).
Participants were asked to discuss questions like, “what are the issues affecting women carriers/extended families/partners?” and then to present their answers to the larger group. This enabled participants to share ideas, perspectives and experiences with one another in an informal and respectful manner. The first part ended with the sharing of personal testimonies by four women in the audience about their unique journey with regards to relationships, family planning and raising children.
The second part consisted of presentations by invited medical experts (who also made it to the venue despite the storm!) about genetic counselling, IVF processes/options and haemophilia-related updates. While largely didactic, participants also had the opportunity to raise questions and clarify issues with the respective speakers.
Early feedback from participants has been greatly positive. Participants came up to us privately to thank us for the workshop. They generally highlighted the value of being able to connect with other women carriers, being able to hear one another’s stories and learn from one another. It was also heartening to hear that regional participants (some had to fly) said it was time well-spent.
MAIN TAKEAWAY POINTS
Women carriers are under-serviced and their needs change as they reach different milestones of their journey. Women carriers probably form the backbone of the community – many grow up with haemophilia and take on unofficial helping roles in caring for their family member.
When they get into a relationship, they have to educate their naïve partners on “what haemophilia is” and together, decide on family planning options. Some of these options, as discussed in the workshop, are not without difficulties.
As a mother, they have to advocate for their children’s health needs at school or in medical settings and as some mothers said, “this is emotionally draining”.
As grandmothers/older women, they see the impact of haemophilia on different generations and again, often become an advocate for the family.
Women carriers in regional areas do struggle more. Their primary health care professionals may not be as familiar with haemophilia and some of the women reported being confused by the medical advice given. As such, more resources and support need to be channelled to regional areas.
It is possible for women carriers to have a normal family life. Some of the factors pointed out by women who said they coped well with having children with haemophilia were having a supportive partner, living close to the treatment centre, having flexible work hours and having confidence in the treatment team. Another participant (mother of a young child) pointed out that treatment is getting better and hence, “it can only be more positive in the future”.
GUIDELINES FOR TESTING
Mothers in the group had questions about when their daughters should be tested for carrier status. The recommendations will vary from state to state but it is prudent to raise any concerns with your treating team as they will be in the best position to provide accurate advice.
Networking among women carriers
One of our goals for this workshop was to provide networking opportunities for women carriers to meet other carriers. We hoped this workshop had facilitated the initial contact. One participant highlighted there are a few Facebook groups which have been launched by individuals to help connect parents/women carriers and participants were encouraged to join if they found it helpful. Participants were strongly encouraged to exchange contact details with one another and use appropriate social media avenues to maintain contact.
Further collaboration between the Centre and HFQ
As a big group, participants had the opportunity to discuss what sort of support/programs they would like to have from the Centre and HFQ. Target areas (e.g. support for partners of women carriers) were identified and some creative ideas were also generated through the discussion. Some spoke about the need for emotional support, respite support and even networking opportunities for children to get to know one another.
Keep the conversation going
Participants were encouraged to approach the psychosocial workers at the Centre or to make contact with the HFQ proactively, if they had further inputs or ideas. By speaking up and raising their hand, it takes the guesswork out of identifying issues and we will have a better understanding of their needs.
We believe that this workshop is the first step in the right direction in providing a sustainable service to women carriers. There is much work to be done and we are optimistic that together with the women carriers who have spoken, we would be able to develop more meaningful services for this community.
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