Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Experiences of Arabic speaking patients in Australian cancer care and views on enablers of clinical trial participation - findings from a Consumer Workshop in NSW (#323)

Michael Camit 1 , Rayan Saleh Moussa 2 , Christine Jeyechandran 1 , Tim Luckett 2 , Charbel Bejjani 1 2 , Ben Smith 2 3 , Slavica Kochovska 2 , Nadine El-Kabbout 2 , Arwa Abousamra 2 , Amin Gadalla 1 , Iman Zakhary 1 , Azhar Matti 1 , Randa Kattan 4 , Verena Wu 3 , Wei Chua 1 , Karen Wong 1 , Shalini Subramaniam 1 , Bernadette Brady 1 , Gemma McErlean 5 , Balwinder Sidhu 1 , Matthew Jennings 1 , Sandra Avery 1 , Deme Karikios 6 , Frances Boyle 7 , Wafa Trad 1 , Weng Ng 1 , Stephen Della-Fiorentina 1 , Martin Hong 1 , Udit Nindra 1 , Meera Agar 2 , Abhijit Pal 1
  1. Sydney South West Local Health District, 2153, NSW, Australia
  2. UTS Cancer Symptoms Trials Group, UTS CST, Sydney
  3. University of Sydney, Sydney
  4. Arab Council of Australia, Sydney
  5. University of Wollongong, Wollongong
  6. Nepean Hospital, Sydney
  7. Mater Hospital, University of Sydney, Sydney

Aims and Background

Improving representation of culturally and racially marginalised communities in cancer clinical trials is a key goal as it enables individuals to gain access to the benefits of scientific research and for communities to have representative trials. We aimed to understand the enablers and barriers to trial participation for Arabic speaking patients in Australia, and to gain consumer input into a trial navigator solution.

Methods

A four-hour workshop for Arabic-speaking adults and/or carers with direct experience of cancer was conducted in March 2024. Participants (n=25) were recruited through social media and cancer stakeholder networks, with three breakout groups facilitated in Arabic and one in English.  Sessions were recorded, transcribed and translated. Thematic analysis was conducted independently by two research team members.

Results

The first part of the workshop on the experience of the cancer journey revealed two key themes: 1) contrast between the Australian and the home country healthcare systems (non-disclosure of diagnosis, paternalism); and 2) distrust of Australian healthcare due to frequent miscommunications and misunderstandings (often due to poor interpreter access). The second part on research revealed three themes: 1) difficulties engaging in research due to trust and communication challenges during their cancer journey; 2) suspicion of clinical research, influenced by poor experiences in their home country; and 3) definite interest in trial navigator but strong focus on cultural safety

Conclusion

This is the first data on perspectives of Arabic-speaking Australians on cancer clinical research participation. We documented multiple instances of culturally unsafe cancer care. We hypothesise that under-representation in clinical research, which requires significant trust, is a downstream consequence of accumulated mistrust in standard cancer care. We are continuing our work on designing a culturally safe trial navigator to improve research participation and building community trust in Australian cancer care.

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