Immigrants and patient participation in the health care services

Pursuant to current legislation, patients and users shall be involved in decisions concerning their health (patient participation at the individual level) and in the design of health and care services (patient participation at the service and system level). Key public documents also emphasize the importance that patient participation in research on services has in obtaining good and relevant health and care services.

Immigrants account for 14.7 percent of our population. In ensuring everyone receives health and care services of the same quality, it is important that immigrants participate in decisions about their treatment, in the design and development of health and care services and in research on services. Consequently, in this summary, we present knowledge about how patient participation by immigrants can be safeguarded. This work is based on a review of publications from research and development, as well as public documents related to the subject.

An important factor in safeguarding patient participation by immigrants is being aware of barriers that can prevent their participation. Barriers to immigrants’ shared decision-making, which is a form of patient participation at the individual level, may include:

• language barriers
• low health literacy
• a lack of trust in the health care system
• withheld information
• health personnel with limited knowledge about the immigrants’ backgrounds
• health personnel and immigrants have different views about health and illness
• health personnel and immigrants have different expectations about roles
• health personnel and immigrants have prejudices and stereotypes about each other
• immigrants have negative experiences of the health care system
• structural and organisational barriers including time pressure

Research and experience from development work show that interpreters, visual aids and decision aids adapted to the relevant target groups can be good instruments for remedying language barriers and safeguarding shared decision-making. Interpreters must translate everything that is said. Moreover, they should be informed about how and why health personnel work to promote shared decision-making. One should include the target group in the work to develop decision aids. 

Interventions to increase health literacy among an immigrant group require dialogue to clarify current understanding, information needs and preferred information channels. Research and other reports propose the following measures to remedy other barriers for shared decision-making: using supportive communication, working to gain trust and building good relationships, and using health personnel with similar linguistic and/or cultural backgrounds as the immigrant.

Factors outside the patient-health personnel interaction are also important for promoting shared decision-making. Researchers propose the following measures to remedy this: management communicates that shared decision-making is a priority, health personnel have enough time during the consultation, it is advantageous from an economic perspective for health personnel to engage in shared decision-making, there is enough time to use an interpreter, there is adequate access to professional interpreters and decision aids, and the physical environment is adapted in such a way that different immigrant groups feel included.

Patient participation at the service and system level has traditionally been safeguarded through measures such as user surveys and representation on councils and committees. However, research indicates that barriers such as a lack of time, finances, limited language skills, too high competency demands and a marginalised position can hinder the participation of immigrant groups in such measures.

Consequently, other approaches should also be used to safeguard patient participation in the development of health and care services among these groups. Observing patients in contact with the health service can be a good way of gaining insight into experiences and health service needs. Focus groups can be used to obtain information about user experiences in encounters with the health and care services. Cooperating with organisations for and involving different immigrant groups can also contribute to patient participation at the service and system level, since organisations can provide information about different immigrant groups and their health service needs and can facilitate contact with the relevant group. Key community members, i.e. people who belong to and know the relevant immigrant group, can participate in the design of an adapted provision and contribute to the recruitment of user participants.

Patient participation in research has received more and more attention, and users should now be involved in publicly funded health research. Patient participation in research contributes to improving the quality and relevance of the research and it can lead to the development of relevant interventions and more adapted services.

The authorities recommend that users are involved in the entire research process from the conception of the idea/theme to collection and analysis of data and dissemination of research findings. However, the literature points to the fact that immigrants and ethnic minorities are often underrepresented in research, and that these groups can be difficult to reach and involve in research projects. Researchers may lack networks and knowledge of various minority groups, while users may distrust the researchers and lack understanding of what research is and how it is done. Furthermore, challenges involving language and communication are often a major barrier. Limited time is also a challenge for both researchers and users, and in many cases inadequate funding is allocated to ensure real patient participation. A lack of diversity and representativeness in academia may increase the distance between researchers and research topics on the one hand and the users and their values and knowledge on the other.

Participatory research is highlighted as an approach or research model that can be especially useful for including under-represented groups in research. It can also contribute to minority groups and local communities finding solutions for their own needs. However, researchers must be aware of the challenges a user role may involve and be conscious that research findings can have negative implications for groups and local communities.

There is a need for research from Norwegian conditions about immigrants’ patient participation at the individual, service and system level and in research about services.