Aim:
Receiving a cancer diagnosis can be very stressful. The need to understand one’s diagnosis and make treatment decisions is often complicated by unfamiliar and technical language and a complex medical system. Personal coping strategies, past experiences, cultural and family expectations and stage of life can also impact how a person manages and makes decisions during this time. The NEMICS Consumer Reference Group identified the need for a resource to help individuals navigate the challenge of a cancer diagnosis by learning from others who have had similar experiences.
Method:
Online video access was selected as the preferred medium for the resource. Video participants were identified from across Victoria via cancer clinicians, the Cancer Council Victoria, Cancer NGO’s, and support groups. Via an interview process, participants were selected for each video to represent a range of ages, gender, ethnicity and experience.
Focus groups were held to determine the issues to be addressed and to inform question development. Each participant participated in a 40 minute semi-structured interview.
Tumour types covered by the videos are aligned with the ‘What to expect’ guides of the consumer versions of the Optimal Care Pathways.
Results:
Over a 12 month period, 42 interviews were recorded. Fifteen videos have been produced, including one addressing end of treatment and survivorship issues. Each video provides lived experience, information learned and strategies used by the participants across the treatment pathway. To date they have received over 3000 views and are located on their own YouTube channel: ‘A common path: cancer information and advice’.
Conclusion:
Participants’ generosity in sharing their cancer experience for the benefit of others has been extraordinary. These videos provide an opportunity for people who have been newly diagnosed with cancer to hear how others have coped with and negotiated their way through this difficult time.