Exploring the involvement of representatives of migrant groups in health research

Abstract Background Public involvement in research is increasingly utilised, but has been problematised for lack of diversity. Involving representatives from seldom-heard groups, such as the migrant population, has the potential to transform health research for some of Europe's most disadvantaged groups. Methods We have explored involvement of migrants in health research projects in Sweden, through a three-year longitudinal qualitative study with migrant contributors involved in a child mental health trial, and a series of behavioural observations of research meetings in several projects with migrant contributors. Results The migrant contributors were initially hesitant to trust the researchers. However, through relationship-building and time, mutual trust was established. The contributors gained a social network in each other and the researchers, and their motivation for involvement changed over time, from focussing on individual benefits to societal change. They viewed their role as sharing their experiences, but saw researchers as in control of the final research decisions. Behavioural observations identified barriers to contributors’ access to information in the meetings, such as academic terminology and difficulties in language interpretation. Enabling factors included balancing the presence of experts in the meeting as well as flexibility towards contributors’ needs and initiatives. Additionally, transparency around the research process and providing feedback to the contributors functioned as enablers for involvement. Conclusions This longitudinal qualitative inquiry paired with behavioural observations, revealed that when involving migrants as public contributors in research, time and resources should be focused on relationship building, to increase mutual trust and understanding, and careful planning undertaken to make the research process transparent and accessible for the contributors. Key messages • Involving migrants in research has great potential – but requires careful planning and consideration. • Awareness of barriers and enablers can assist researchers in attaining meaningful involvement.


Background:
Public involvement in research is increasingly utilised, but has been problematised for lack of diversity. Involving representatives from seldom-heard groups, such as the migrant population, has the potential to transform health research for some of Europe's most disadvantaged groups.

Methods:
We have explored involvement of migrants in health research projects in Sweden, through a three-year longitudinal qualitative study with migrant contributors involved in a child mental health trial, and a series of behavioural observations of research meetings in several projects with migrant contributors.

Results:
The migrant contributors were initially hesitant to trust the researchers. However, through relationship-building and time, mutual trust was established. The contributors gained a social network in each other and the researchers, and their motivation for involvement changed over time, from focussing on individual benefits to societal change. They viewed their role as sharing their experiences, but saw researchers as in control of the final research decisions. Behavioural observations identified barriers to contributors' access to information in the meetings, such as academic terminology and difficulties in language interpretation. Enabling factors included balancing the presence of experts in the meeting as well as flexibility towards contributors' needs and initiatives. Additionally, transparency around the research process and providing feedback to the contributors functioned as enablers for involvement.

Conclusions:
This longitudinal qualitative inquiry paired with behavioural observations, revealed that when involving migrants as public contributors in research, time and resources should be focused on relationship building, to increase mutual trust and understanding, and careful planning undertaken to make the research process transparent and accessible for the contributors.

Key messages:
Involving migrants in research has great potential -but requires careful planning and consideration. Awareness of barriers and enablers can assist researchers in attaining meaningful involvement.

Background:
Chronic kidney disease (CKD) has increased progressively worldwide, however evidence on public awareness highlights gaps for a comprehensive public health strategy. This study aims to evaluate public knowledge and possible lack of awareness about CKD in Portugal.

Methods:
Cross-sectional study conducted through community based online survey (n = 1209). It was applied the CKD Knowledge Questionnaire and a score was calculated from 24 items categorized in 5 dimensions. Bivariate analyses was performed using one-way ANOVA and independent T-tests, at a 5% significance level, to compare the effect of independent variable and score.

Conclusions:
People living in Portugal revealed a middle knowledge level. Knowledge higher scores were observed in female, people with higher level of education, with experience imposed by health condition (e.g., risk factors or history disease), and access to health services. Future health education focused on 'Functions of kidneys perform in the body' might be an important contribution to increase health literacy about CKD. Key messages: Social vulnerabilities may be associated with lower levels of public knowledge of Chronic Kidney Disease. The evaluation of population's knowledge about CKD is an important instrument for public health policy-making. iii296 European Journal of Public Health, Volume 32 Supplement 3, 2022