Healthcare Professionals

How you can support SWAN families

Healthcare professionals are part of SWAN families’ support teams. Sometimes, it is difficult to know what to say to a family or who to connect them with for support. Please encourage families caring for children with undiagnosed or rare genetic conditions to join SWAN activities for support. You can never underestimate the impact of peer support. 

For more information and guidance on how you can support our SWAN families, please download our Healthcare Professionals information sheet.  

Our top tips on supporting families

  • Being clear, considered and empathetic in your communications with families is a powerful way to support them. Our information sheet provides tips on language and communications and draws on families’ reflections and recommendations. 
  • Empathise with the feelings and emotions that SWAN families experience, such as anxiety, uncertainty, sadness, grief and frustration.
  • Consider parents and carers to be your partners in the care of children. They are their child’s best expert and often know more about their child’s rare genetic condition than many of the health professionals they see. 
  • Connect SWAN families with support services and be sure to tell them about SWAN Australia. We can keep them posted on available and changing services and offer advice on accessing them. We can also connect them with other families who will understand their experiences. Peer support is enormously valuable for families caring for children with undiagnosed or rare genetic conditions.
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