Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2019

“Use our words for change”: Developing and implementing culturally appropriate patient experience surveys for Australian Aboriginal and Torres Strait Islander people. (#253)

Eli Ristevski 1 , Claire Nightingale 2 , Sharyn Thompson 1 , Fiona McCook 1 , Nicole Cassar 3 , Spiridoula Galetakis 4 , Jane Weber 4 , Victoria White 5 , Jacinta Elston 6
  1. Monash University, Monash Rural Health, Warragul, Victoria, Australia
  2. Monash University, Monash Rural Health, Bendigo, Victoria, Australia
  3. Nicole Cassar, Nicole Cassar Consulting, Melbourne, Victoria, Australia
  4. Department of Health & Human Services, Cancer Strategy and Development, Melbourne, Victoria, Australia
  5. Deakin University, School of Psychology, Melbourne, Burwood, Victoria, Australia
  6. Monash University, Office of the Pro Vice-Chancellor-Indigenous, Melbourne, Victoria, Australia

Background: Aboriginal and Torres Strait Islander patients have poorer health care experiences compared to non-Aboriginal and Torres Strait Islander patients. Patient experience surveys provide data to influence service improvement. A patient experience of cancer care survey was recently implemented in Victoria. The survey includes 187 items and examines experiences along the pathway of care, inclusive of all treatment modalities. The cultural appropriateness of this tool had not been assessed.

Aim: To identify key variables and protocols to use in a primarily quantitative survey to capture the cancer care experiences of Aboriginal and Torres Strait Islander people in Victoria.

Methods: Yarning Circles and interviews were conducted with 45 Aboriginal health professionals, consumers and families from rural and metropolitan areas. Purposive sampling was used to invite participants. The study comprised four phases: (1) initial review of tool (2) thematic analysis and modification (3) review of the modified tool (4) final thematic analysis and modifications.

Results: Sectioning the tool into phases of care and treatment modalities did not resonate with reflections of cancer experiences. Questions were focused on clinical processes rather than the actual experience of care. A clear purpose statement regarding use of survey results, and ensuring a mechanism for providing feedback was suggested to provide better engagement. Reporting on change in health services was important. Participants advocated for questions to be framed in plain language, using active voice and suggested that questions about finances, family, cultural supports and respect be more prominent. The timing of survey administration should consider late presentation and advanced disease, the higher mortality and the possibility of re-traumatising respondents can influence participation rates.

Conclusions: Research findings are likely to apply across different socioeconomic and cultural groups. Rather than creating surveys for different populations, one survey with clear purpose, questions and outcomes would benefit all population groups.