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Table 2 Barriers and facilitators to involving people who are members of vulnerable populations

From: Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study

Barriers
1. Scheduling: People are busy, may be sick, and research teams have to consider multiple and possibly conflicting schedules to be able to gather everyone together.
2. Transportation: Transportation costs can be a barrier to members of vulnerable populations.
3. Ethical procedures: Institutional review boards’ established procedures may not be suited to some populations; for example, detailed consent forms may present difficulties for people with lower literacy, even when read aloud.
4. Lack of trust: People may refuse to participate due to a lack of trust in the research team.
5. Finding an appropriate workload: It can be difficult to find the sweet spot between enough involvement for meaningful participation but not so much that it becomes overwhelming.
6. Project planning: Projects that involve members of vulnerable populations may require more time, possibly a bigger budget and more planning, which may or may not be feasible within the constraints of funded research projects.
Facilitators
1. Flexibility in scheduling: Teams should work around scheduling constraints, including people’s other commitments such as work and caregiving activities.
2. Location: A community-based setting helps reduce potential power imbalances and can also help with logistics.
3. Favourable institutional environment: It is helpful to work with an institutional review board or research ethics committee who already have knowledge or who are open to learning more about norms and best practices in research involving members of vulnerable populations.
4. Relationship of trust: The research team needs to take the time to build trust with patient partners from vulnerable populations and also with all the other people involved in the project, including community workers and health care professionals.
5. Enjoyable methods: Having activities that people enjoy can stimulate sustainable participation in project; for example, people may enjoy focus groups more than filling out questionnaires.
6. Adapting the technology: It may be necessary to adapt technology; for example, particularly when working with people who are members of populations with lower literacy and less access to internet, communication by email may not be ideal.
7. Financial and material incentives: Remuneration, honoraria, or material incentives provide a way to say thank you and to demonstrate the value and importance of people’s participation in the project.
8. Relevance and importance of topic to the community: Ensuring the topic is relevant and important to the community encourages interest and commitment.