Engaging diverse communities is important to ensure both equality and robust research outcomes, and to create an inclusive group. Diverse communities include Aboriginal and Torres Strait Islander peoples and culturally and linguistically diverse (CALD) communities.

In engaging diverse communities, respectful and collaborative strategies are important to facilitate positive participation. Consultations with individuals from diverse communities need to be done sensitively and in a way that is mindful of the culture, values and perspectives of the specific community.

However, don’t assume that all Aboriginal and Torres Strait Islander or CALD communities are the same or that all individuals within a community share the same values or cultural sensitivities.

The key to assuring appropriate work with consumers is to ask them how they’d like to engage. If possible, let them shape how their participation might occur.

Encourage your organisation to develop relevant policies and be proactive in addressing issues that will lead to improved outcomes.

Below are some suggested approaches for working with Aboriginal and Torres Strait Islander peoples and CALD communities.

Involving consumers from Aboriginal and Torres Strait Islander communities

Consider the following guidance when involving consumers from Aboriginal and Torres Strait Islander communities.

• Be aware of the ethical consideration around research involving Aboriginal and Torres Strait Islander peoples. The Australian Institute of Aboriginal and Torres Strait Islander Studies Code of Ethics for Aboriginal and Torres Strait Islander Research outlines 4 principles that underpin ethical research.
• Whenever possible, engage with people in person. Go to them; do not expect them to come to you.
• Try to understand the cultural considerations of the community. In some Aboriginal and Torres Strait Islander communities, particularly those in rural and remote areas, the cultural understanding of health and wellbeing may be quite different from the bio-medical model adopted by health services. This is especially important in understanding an individual’s perspective on cancer and the treatment process, and the community’s acceptance of a particular medical approach.
• Free, prior and informed consent (FPIC) must be obtained from each person before they are involved in research. FPIC means that people fully understand what is happening, the aims and processes involved in the research, and how the information will be used. FPIC allows First Nations peoples to provide, withhold or withdraw consent to the use of their intellectual property at any time.
• Provide clear information to support FPIC, and think about how information is presented. Some generic documents may not be appropriate for an Aboriginal or Torres Strait Islander person who may have different cultural views that will affect their understanding and acceptance of cancer. The Our Mob and Cancer website, developed by Aboriginal and Torres Strait Islander people, provides a good starting point. Also, remember that English may not be the first language of many people from these communities. If you are able to think of innovative ways of presenting health information about cancer treatment and support—ways that do not rely solely on the written language—you may have greater success with some consumers.
• Be aware of preferences around language and ask what the community would prefer. Australia is home to many language groups and Nations. Each one may have different preferences about which terminology is respectful (for example, ‘First Nations’, ‘Indigenous peoples’, ‘Aboriginal and Torres Strait Islander peoples’). Specific communities, groups and individuals may also have their own preferences.
• Be aware of titles. Titles such as Elder, Knowledge Holder, Aunty or Uncle are given within First Nations as a sign of respect. Ask before using, both in spoken and written language. Individuals who have these titles may only want the title used within their community.
• Speak to elders and other community leaders to understand any particular cultural considerations that will need to be acknowledged. For example, in some communities it is not appropriate to speak the name of someone who has died. You need to be especially aware of the cultural sensitivities and traditions associated with death and dying.

Facilitating Aboriginal and Torres Strait Islander consumer involvement

Hopefully your organisation will have Aboriginal people employed as Aboriginal Liaison Officers, Aboriginal Family Support Workers or Aboriginal, Education and Training Officers. If so, they are the ideal people to facilitate the involvement of their community.

If your organisation doesn’t have these positions, approach the person who is responsible for involving consumers more broadly across the organisation. Together you can contact your regional or local Aboriginal health organisations or Aboriginal and Torres Strait Islander Health Workers for support and guidance in reaching community groups.

Support for Aboriginal and Torres Strait Islander consumer involvement

Key elements for successful involvement of Aboriginal and Torres Strait Islander consumers are:

• strong, equal and respectful partnerships with communities
• organisational policy, management and resource support.

Ideally, your organisation will have or will develop policies regarding working with and involving Aboriginal and Torres Strait Islander peoples. It will also be important to establish a team of staff or a dedicated position to work specifically with them.

Cultural awareness and respect are essential to effective engagement with Aboriginal and Torres Strait Islander communities. Cultural training should be provided for all staff involved - this includes training for both project and senior staff.

Senior management support is essential to involving Aboriginal and Torres Strait Islander consumers, and management should be engaged at the early stages. One way to do this is to invite a senior staff member to be involved in partnership or project meetings with the Aboriginal community.

Implementing Aboriginal and Torres Strait Islander consumer involvement will take time. Ensure you take the time to build relationships and proceed at a pace that the community finds comfortable. Ensure transparency of information and processes at all times.

It is a good idea to start with small and clearly defined consumer involvement initiatives, relatively short in timeframe and manageable by current staff. Avoid large, complex projects initially to allow the relationship between the organisation and the community to develop.

Improving communication with Aboriginal and Torres Strait Islander consumers

Below are some ways you can strengthen communication with Aboriginal and Torres Strait Islander consumers.

• Increase participation of Aboriginal and Torres Strait Islander consumers in service planning and management.
• Facilitate involvement of staff from relevant cultural and language groups.
• Offer training on intercultural understanding and communication for staff.
• Increase opportunities for consumers to initiate and structure interactions.
• Create conditions for consumers to make genuinely informed decisions, by increasing shared understanding and improving communication practices.
• Support collaboration between staff, consumers and interpreters to construct a shared understanding of key processes and concepts.
• Improve consumer and staff collaboration in case management, including better consumer access to their medical records.
• Support the involvement of interpreters in engagement.
• Develop, implement and evaluate specific communication strategies to increase the capacity of staff to prevent, monitor and repair communication difficulties in interactions with Aboriginal and Torres Strait Islander consumers.

Involving consumers from culturally and linguistically diverse backgrounds

As a multicultural country, effective involvement of CALD consumers is important in all health research in Australia.

The first step to involving CALD consumers is to identify the various CALD groups that interact with your organisation or in the local community. This can include groups currently involved, and potential groups that are yet to be involved. Building and maintaining links with cultural associations and ethno-specific organisations and communities can then help to facilitate meaningful partnerships. 

Ensure that your staff have appropriate skills, experience and confidence to engage with these communities. This might mean investing in resources or training to develop an understanding of cultural and linguistic appropriateness, and identifying considerations for mentoring and supporting CALD consumers. For example, the Centre for Culture, Ethnicity and Health provides various resources, including online cultural competence tools and training.

Understanding the important issues for specific groups can also facilitate effective engagement:

• Identify migration history and length of community settlement in Australia.
• Familiarise yourself as much as possible with the basic historical, social, political and economic factors affecting these communities.

Ensure that consultations or work with consumers from CALD communities are appropriate:

• If you will be holding meetings, consider cultural preferences for things like meeting places, times, and gender mixes.
• Asking for individual opinions or feedback may not be a good fit with the collective orientation of some cultures.
• Satisfaction surveys may only elicit positive feedback from some CALD consumers, regardless of negative experience.
• Something that might be considered a traditional practice may not be appropriate for all CALD consumers in a particular community.
• Replicating practices from a consumer’s country of origin may not take into account that these may be considered unjust by some members of the community, who may feel marginalised in their own community; examples of this might include how the status of women can differ between cultures.

Support for culturally and linguistically diverse consumer involvement

Addressing the language needs of CALD consumers is essential for working with this group. These are a few suggestions for getting it right:

• Provide information in their first language. Ensure translations are done by first speakers and checked to ensure nuances of health information and language are accurately captured.
• Use interpreters or bilingual workers if necessary.
• Investigate whether your consumers speak languages or dialects from a particular country of origin.
• Undertake research or consultation with community leaders or organisations which will help to determine which languages are appropriate, and what is the level of literacy of a particular community, not only in English but also in their own language.

Support for CALD consumers may be different than that needed by other consumers due to their individual language needs, migration history, knowledge of the health system or cultural values and beliefs. The level and type of support required will need to be established by working with the individual person.

Some of the support mechanisms that you may offer to your CALD consumers are:

• Mentoring - to develop the consumer’s knowledge of committee structures, the concept of consumer participation, information about the service provider, or the nature of the health system (health systems in other countries may be vastly different from Australia’s).
• Briefing and debriefing - prior to meetings, for preparation and encouragement; following meetings, for debriefing complex issues or difficult conversations. The group or committee should create an environment where the consumer feels supported to speak up and where staff avoid the use of jargon.
• Reimbursement and training – these are particularly important for this group of consumers. Reimbursement may be particularly important in smaller communities where there may be ongoing opportunities for participation and input, but only a few in the community who are able to commit their time due to other issues being a priority, such as housing and employment.

When working with a representative of a specific CALD community, you need to understand the links between the representative and the community being represented. Questions that may be asked include:

• How well-connected is the consumer to their community?
• How will feedback and consultation occur between the consumer and their community?
• How often will it occur?
• Is the consumer representative being supported by the organisation to consult with communities on an ongoing basis?

Remember that there is great diversity within communities and, therefore, the views of all community members cannot be represented by a small number of people. You may also find that the same few people from the target community volunteer every time because of language skills or community status.

It’s important to clarify where the views are coming from and whether the views of others are being heard. You might ask your consumers to try to present the most dominant view in a community, to talk about the spectrum of viewpoints and think about which views might be marginalised. Make clear the specific target group that is being represented (e.g. women, older people, youth, people with a particular illness).

Related to the issue of over-representation is the issue of consumer fatigue. Fatigue may emerge due to the obligations felt by consumers to the community they are representing. Organisations can lessen this pressure by limiting the amount of time a representative sits on a committee, by rotating different representatives through different functions, or by means of a coordinated approach to consumer participation organisation-wide. If you can recruit a larger group of people to represent community views, that may assist in sustaining input over time.