Community action on Fetal Alcohol Spectrum Disorder (FASD) in Whanganui - Whanganui District Health Board
What issue did you act on?
We wanted families and whānau in Whanganui to understand the risks of drinking alcohol during pregnancy and be supported to have healthy, alcohol-free pregnancies. We understand that incorrect information, fear of causing stress, and social pressure to drink may be barriers to women and their support group making well-informed choices around alcohol use during pregnancy. To help with this we wanted to develop and disseminate clear, unambiguous, and consistent messages to increase awareness of the risks of drinking during pregnancy within the whole community. A little understanding (as long as it is evidence-informed) can go a long way. We wanted to ensure that any support would build on a person’s and family’s natural resources and strengths and focus on developing and reinforcing essential skills and strategies. We also wanted to raise awareness about the effects of alcohol and provide coping strategies for those who want to stop or reduce their drinking and for the community to be aware of the Alcohol Drug Helpline – 0800 787 797 for advice and help. Ultimately, we wanted to reduce the harm alcohol can cause to unborn babies and reduce the stigma and discrimination for children and whānau affected by FASD (Fetal Alcohol Spectrum Disorder) in Whanganui.
How did you act?
We had Dr. Valerie McGinn (Clinical Neuropsychologist and Clinical Director of the FASD Centre, Aotearoa) come down to Whanganui and do a presentation on FASD. This presentation encouraged the community to act and resulted in the formation of the FASD Network Group (for professionals) and the FASD Support Group (for families affected by FASD). The FASD Network Group meets every 3 months and delivers training and presentations for health care professionals (Public Health Nurses etc.), teachers/aides and community alike. The FASD Support Group meets monthly and provides support to families that live with FASD. We support the FASD Support Group with marketing which included the development of resources for the group.
At the Whanganui District Health Board – Public Health Centre, we use any opportunity to promote FASD awareness for example, during other issue awareness months and events such as Well Child Week and Brain Injury Awareness Month. I will be doing Dry July to raise awareness about FASD. Additionally, during FASD Awareness month in September we do a range of awareness related activities and promotions such as presentations to the community and, supporting the Red Shoes Rock campaign by painting rocks and hiding them around Whanganui.
What worked well?
- The key thing for us is having someone with lived experience available to strengthen our FASD presentations to community groups and networks. It provides a reality check for those listening to our presentation, and we hope it also decreases stigma and discrimination.
- Having the support of the FASD Network Group which is currently composed of WDHB – Public Health Centre, Ministry of Education, CAYAD and the FASD Support Group. Having a multiagency group makes it easier to share the workload relating to our health promotion activities.
- Koha for presenters especially for individuals with lived experience. They are the only ones working voluntarily.
- Having FASD as a core business for public health units and finding community partners that have the same focus, like in our case CAYAD.
- Being proactive about promoting FASD awareness; look for every opportunity to talk about FASD in your community. This needs to be underpinned by the health promoter keeping up-to-date with the latest information and research on FASD to be able to provide the correct information in presentations, and it also helps with your confidence when presenting to groups and networks.
- After each presentation, provide time to debrief and feedback on the presentations for ‘check and balance’.
- Using each other’s PowerPoints so that we have consistency in our presentations. We also do presentations at different times to cater for different audiences.
- Incorporating FASD in other work we are already doing in the community. For example, I present to the Community Probations Service every month on ‘Facts and Effects of Alcohol’. I use this platform to talk about FASD, cancer, etc.
- Building relationships with other advocates and using their activities and networks to also spread the FASD message. For example, I do joint presentations with our Sexual Health Nurse in schools, and I am part of the orientation programme for student nurses.
- Taking part in policy advocacy - make submissions and include FASD in these submissions, whether it is to support Local Alcohol Policies or to increase awareness of alcohol-related harm.
- Advocating and promoting FASD resources to groups and networks, for example Te Pou’s on-line training on FASD.
What did not work well?
- It is more of a challenge but the stigma around FASD can be difficult to deal with. We still need to do more FASD awareness, normalise it in conversation, and make people feel more comfortable talking about it.
- The FASD Support Group is struggling to get membership. Most of the time, they will just make phone contact and do one on one support with community members as they are not ready to attend a group.
Top tips for others we learnt from this experience
- Make FASD a priority in your service. Obtain your manager’s backing to enable this.
- Take every opportunity to talk about FASD, even if it means wearing red shoes to start the conversation!
- Be the face of FASD, so people know who to contact if they have questions, or you can assist them to navigate services.
- Have good relationships with Public Health Nurses, Maternity Services, and other health professionals that you can use to also spread the FASD message (advocate for them to do on-line FASD training and build their FASD knowledge base).
- Be in the community. I find it easier to talk about FASD than talking directly about someone’s drinking.