Between December 2024 and March 2025, the NZ Familial Breast & Ovarian Cancer Trust conducted an online survey in cooperation with peer support group Gift of Knowledge.
The aim was to better understand the experiences and information needs of young New Zealanders impacted by familial cancer. The survey invited participants aged 16 to 30, and attracted responses primarily from those in the 26–30 age group.
The majority of participants identified as female, lived in urban areas (80%), and most identified as NZ European/Pākehā. This highlights the need to better engage with young Māori and Pasifika communities to ensure their perspectives and needs are heard.
A key goal of the survey was to learn more about how young people first become aware of familial cancer in their families and where they turn for information. One-third of respondents reported becoming aware between the ages of 10 and 13, though the age of first awareness varied widely. Most reported that parents or primary caregivers were their main source of information, followed by general practitioners (GPs) and online support groups. The results also highlighted opportunities to strengthen the role of healthcare professionals.
Only 14% of respondents rated their GP as “very knowledgeable” about familial cancer and related risks or options. While most had family members already connected with Genetic Services, three participants indicated that their GP had never discussed these services with them. In addition, 88% were not recommended any websites or support groups by their GP, suggesting a gap in signposting useful resources.
When seeking information, most respondents turned to websites such as the NZ Breast Cancer Foundation and the NZ Cancer Society, pointing to a need for increased visibility of resources specifically addressing familial cancer. Online formats were strongly preferred, with websites, articles, videos, brochures, and podcasts identified as helpful ways to access information.
The survey also explored testing for familial cancer gene mutations with 66.7% of respondents reporting that they had already undergone testing—many as soon as they turned 18. Of those not yet tested, only one indicated they did not intend to be tested in the future.
These insights will help guide the Trust’s ongoing efforts to develop youth-focused resources, provide information for our frontline healthcare professionals, and improve access to relevant, supportive, and reliable information for all young people affected by familial cancer in Aotearoa.
