Adapting shared decision making and decision aids for diverse cultural and linguistic communication needs

This article, by Nami Nelson, was originally published on the 30th September 2020 on the Shared Decision Making in Healthcare blog. The blog has now been archived and is no longer accessible.

Given the cultural and linguistic diversity of Australia, we thought it would be a good use of this blog to start sharing examples of how shared decision making (SDM) processes and decision aids are being adapted to different language and cultural contexts.

When a document is translated, it may also need to be culturally adapted (Beaton et al., 2000). And in some situations, even same language documents may need to be culturally adapted. A good example of this was the ‘Cultural adaptation of a shared decision making tool with Aboriginal women: a qualitative study. The study was a partnership between the researchers and Aboriginal owned community organisation, Minwaashin Lodge, in Canada to consult with community and adapt the Ottawa Personal Decision Guide (OPDG) to their communication needs and preferences. At the time of publishing, the authors stated that there were “..no studies of SDM tools that have been developed for and with Aboriginal populations for use within Western health care settings” (Jull et al., 2015).

The OPDG is available in 11 languages and is a resource that can be translated into other languages. However, the adjustments made to the OPDG as part of the Minwaashin Lodge study highlight how translation alone may not address cultural communication needs. Structure, tone, familiar and friendly language, historical relationship between community and government services, colour, indications of community ownership, incorporating steps to consider implementation of the decision and the importance of how the decision aid was used (i.e significance of decision coaching) were all critical areas of feedback for adapting the OPDG to the communication needs of the community. Importantly, the Indigenous women involved in the adaptation did not want more homework to complete the OPDG – instead they asked for it to be used as a “talking stick”. The adapted OPDG is available here.

Examples of cultural and language adaptations of SDM and decision making in Australia

In Australia, there are some, but few, formal publications or peer reviewed research of efforts to engage Culturally And Linguistically Diverse (CALD) or Aboriginal and Torres Strait Islander (ATSI) communities specific to the cultural adaptation of shared decision making in health care processes and patient decision aids. Because of this scarcity, and with full awareness of the unique complexities of both CALD and ATSI communities, we have included them together in this blog.

In the Northern Territory, with its rich cultural and linguistic diversity of Indigenous Australians, the Top End Health Service is exploring changes to end of life planning to reflect shared decision making (Spencer and Waran, 2020). Specifically, they are seeking to incorporate important cultural preferences and considerations in the Goals of Care framework for choices being made with indigenous patients and their families. An example that highlights the necessity of this, is the importance of being able to ‘..”finish up” (a culturally appropriate term for death and dying) “on country” (ancestral lands)’ over other care options that may prolong life but require staying in tertiary care. Starting with a collaborative approach to cultural communications training and use of a Goals of Care framework, it will be fantastic to see the learning that emerges as implementation towards SDM continues.

Shared decision making seeks to ensure individual preferences and needs are integral to the decision making process. We need to be careful about assessing each individuals’ needs and preferences rather than assuming they are the same as those reported in a culture or reported in the clinical practice guidelines.

A recent study exploring the decision making experience of the culturally diverse population receiving in-centre haemodialysis for chronic kidney disease (CKD) in Greater Western Sydney (38% born overseas and 42% speak a language other than English at home) highlights this point. The key finding emphasises the importance of individual differences within cultural groups. (Muscate et al., 2018).

Other relevant findings identified in the study that could help inform shared decision making planning include:

  • Decisional awareness: The study described participants as having low decisional awareness when it came to changes in diet, medication or lifestyle compared to the decision to start dialysis. The authors discuss how this may indicate a need to expand how decision making is communicated with patients to encompass “multiple decision points throughout their illness trajectory”.
  • Role of family: The importance of family in decision making about dialysis was highlighted in the study, not as something that is significant to any specific cultural group, but globally. The authors explored how families are involved in decision making including their influence on other CKD healthcare decisions beyond dialysis (e.g. medications, lifestyle and diet changes) and for supporting implementation of the chosen option.
  • Willingness to ask questions: High levels of trust in health professionals appeared to represent low level willingness to proactively ask questions in the study. Hence, the importance of health professionals inviting patients to participate in making decisions by specifically asking them what outcomes are most important and eliciting their preference.
  • Communicating important health information: The study re-emphasized the need for greater consistency in how health information is communicated. For example ensuring information is at an appropriate health literacy level and that resources are translated into languages other than English.

While there are increasing numbers of decision aids in various online, interactive and hardcopy print formats in Australia, it has been difficult to locate publicly available Australian decision aids that have been translated into languages other than English. The Ottawa Hospital Research Institute maintains a library of global decision aids the meet a minimum international standards. The Dementia and Driving Decision Aid is an Australian decision aid (available as a PDF or as an online module) included in the library and was last updated in 2017. It is available in Arabic, Vietnamese, Greek and Italian for Australian audiences. Small and large print versions are also available.

In the coming years, there will no doubt be a lot of experimenting, testing and learning of how SDM can help strengthen patient-centred care for all, including CALD and ATSI communities. Rather than working independently, finding ways to share the cumulative learning, ideas and understanding of what works, or doesn’t work, will be important for any SDM implementer. We have included only a few examples here as starting points for your own planning and to inspire ideas for your own projects. If you know of any translated decision aids or SDM processes that have been translated or adapted for CALD or ATSI patient/carer audiences in Australia, or have evaluation data or case studies available, we would love to share these with other SDM implementers on the Community of Practice. You can share them with us by emailing shared.decision.making@latrobe.edu.au.

Questions to consider

  • How will you work with the communities that you want to engage in SDM to make sure communications, process and any patient decision aids, tools or information is tailored to their linguistic and cultural needs?
  • What kind of practical cultural awareness training have health service staff undertaken? Was the training conducted or designed in partnership with the communities themselves? Did the training emphasise the dual importance of cultural awareness and individual preferences?

References

Beaton, D.E. et al. Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures. 2000. Spine, 25(24), pp.3186–3191. Accessed September 2020 https://doi.org/10.1097/00007632-200012150-00014

Carmody, J; Traynor, V, et al. Dementia and Driving: a decision aid. Version 4. 2017. University of Wollongong. https://documents.uow.edu.au/content/groups/public/@web/@smah/@nmih/documents/doc/uow185367.pdf

Dimopoulos-Bick, T. What can we learn from international experiences to improve the uptake of shared decision making in NSW Health? 2017. HARC SCHOLARSHIP REPORT. NSW Agency for Clinical Innovation. Accessed September 2020 https://www.saxinstitute.org.au/wp-content/uploads/19.05_What-can-we-learn-from-international-experiences-to-improve-the-uptake-of-shared-decision-making-in-NSW-Health.pdf

Jull, J; Giles, A; Boyer, Y, et al. Cultural adaptation of a shared decision making tool with Aboriginal women: a qualitative study. 2015.BMC Med Inform Decis Mak 15, 1. Accessed September 2020 https://doi.org/10.1186/s12911-015-0129-7

Muscat, D; Kanagaratnam, R, et al. Beyond dialysis decisions: a qualitative exploration of decision-making among culturally and linguistically diverse adults with chronic kidney disease on haemodialysis. 2018. BMC Nephrology; London Vol. 19. Accessed September 2020 https://doi.org/10.1186/s12882-018-1131-y

Spencer, E and Waran, E. Opening the lines of communication: towards shared decision making and improved end‐of‐life care in the Top End. 2020. Med J Aust; 213 (1): 10-11.e1. Accessed September 2020  https://www.mja.com.au/journal/2020/213/1/opening-lines-communication-towards-shared-decision-making-and-improved-end-life