Poster Presentation Cancer Survivorship 2017

Development of written resources with and for culturally and linguistically diverse cancer survivors in Australia: lessons learnt    (#87)

Georgina E Wiley 1 2 , Amanda Piper 2 , Phyllis Butow 3 , Penelope Schofield 4 5 , Melanie Price 3 , Jane Roy 6 , Fiona Douglas 7 , Linda Nolte 8 , Michael Jefford 2
  1. Peter MacCallum Cancer Centre, Melbourne, VICTORIA, Australia
  2. Australian Cancer Survivorship Centre - A Richard Pratt Legacy, Peter MacCallum Cancer Centre , Melbourne, Victoria, 3000
  3. Psycho-oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, NSW, Australia
  4. Department of Cancer Experience Research, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia
  5. Swinburne University, Melbourne, Victoria, Australia
  6. Cancer Council Australia, Sydney, NSW, Australia
  7. Cancer Council Victoria, Melbourne, Victoria, Australia
  8. Austin Health, Melbourne, Victoria, Australia

Background

Australia is a multicultural nation with a large migrant population.  Migrants with cancer report inferior quality of life and need for more information in their language. We developed new written resources for people who speak Cantonese, Mandarin, Greek, Italian, Vietnamese and Arabic.

Aim

To describe lessons learnt from developing culturally appropriate written information resources with and for Arabic, Italian, and Vietnamese cancer survivors and carers. 

Methods

Information needs of survivors from these language groups and guidelines for the development of resources for culturally diverse populations were identified through literature. Community consultation was undertaken with focus groups (FG) in each language with survivors and carers. Content was developed and tested with health professionals who spoke the appropriate language and FG participants ensuring relevance and appropriateness; resource design and dissemination were informed by ongoing community consultation. 

This process recognised a number of development stages as vital. Many stages were identified as unique to developing resources for culturally diverse populations.    

Results

New print resources were developed and reviewed by survivors and carers.  Reviewers felt that there was a correct amount of information and that content was relevant and reassuring. No reviewers rated the resources negatively. Comments validated feedback received in the FGs. The development of bi-lingual resources provided additional ways for the resources to be used and disseminated.   

Five key principles were identified as being vital to the development of culturally appropriate resources with and for cancer survivors and their carers: (1) community engagement and consultation (2) content development (3) translation and review process (4) design (5) sustainability and dissemination. 

A systematic process was developed to guide the development of future resources.   

Conclusions

Cultural sensitivity should be at the core of information resource development for culturally diverse groups. Stakeholders and lay persons from the intended ethnic-minority communities should be involved in the development and formative evaluation of resources to ensure cultural relevance.