Table 1 Summary of the barriers to the inclusion of elderly participants who are culturally and linguistically diverse (CALD) in clinical trials and the strategies that have been developed to overcome them

1. Mistrust

• Of society, the scientific community, and research institutions, and of the healthcare system

1. Community relationship building & outreach

• Enrol community gatekeepers in the research

• Build coalitions & partner with physicians

• Enrol trusted and prominent community members (community and religious leaders)

• Make use of other referral sources

• Get involved with the community (attend events, etc.)

• Provide support to the community outside of research in ways that are meaningful to the community

• Maintain connections with communities

• Involve the community in study design and implementation

2. Communication

• Low English proficiency

• Information presented is too complex

• Low health literacy

• Failure of researcher to communicate study rationale

• Failure of researcher to communicate research findings

2. Communication – initial & ongoing

• Provide education about health and medical research

• Provide training for key community representatives

• Provide community information sessions

• Explain potential benefits of participation

• Engage in follow up: provide feedback and study results to participants

• Provide translations of forms and materials

• Provide simple, appropriate, and systematic explanations of research

• Use innovative materials to enhance comprehension (e.g. video presentations, animations).

• Simplify language and decrease content in consent documentation

• Apply user-friendly formatting and presentation (large graphics, both visual and audio input)

3. Cultural

• Stigma

• Culturally inappropriate assessment measures

• Potential clash of beliefs around health care

• Potential alienation of participants if staff lack cultural diversity

• Potential issues with requiring signed written consent

3. Cultural sensitivity

• Be informed about the background and cultural circumstances of the CALD group in question

• Use culturally appropriate language, symbolic gestures, and ideas. • Respect differences

• Make provision for possible adaptations based on cultural differences

• Use bilingual/bicultural staff and staff reflective of the community

• Ensure consent process is culturally compatible/acceptable (e.g. accept verbal consent if preferred by participant)

4. Economic & time constraints

• High likelihood of socioeconomic hardship

• Limited availability of participants

4. Facilitate access to research studies

• Take the research to the community

• Provide reimbursement for travel expenses

• Provide childcare

• Be flexible with scheduling

• Conduct research within the community/conduct home visits

• Provide transportation

5. Mobility

• Mobility may be restricted for cultural or religious reasons.

• In elderly populations, mobility may be a factor because of increased frailty and/or impaired functionality.

5. Awareness raising amongst researchers and other stakeholders of barriers to CALD participation

• Revisit and adapt consent processes for CALD groups

• Make study designs less rigid

6. Opportunity

• People with low English proficiency or literacy levels are often excluded from trials.

• Clinicians attitudes are a strong barrier.

• If clinicians experience the costs or burden of data collection to be high, they are less likely to recruit participants.