Participatory epidemiology: the contribution of participatory research to epidemiology

Background: Epidemiology has contributed in many ways to identifying various risk factors for disease and to promoting population health. However, there is a continuing debate about the ability of epidemiology not only to describe, but also to provide results which can be better translated into public health practice. It has been proposed that participatory research approaches be applied to epidemiology as a way to bridge this gap between description and action. A systematic account of what constitutes participatory epidemiology practice has, however, been lacking. Methods: A scoping review was carried out focused on the question of what constitutes participatory approaches to epidemiology for the purpose of demonstrating their potential for advancing epidemiologic research. Relevant databases were searched, including both the published and non-published (grey) literature. The 102 identified sources were analyzed in terms of comparing common epidemiologic approaches to participatory counterparts regarding central aspects of the research process. Exemplary studies applying participatory approaches were examined more closely. Results: A highly diverse, interdisciplinary body of literature was synthesized, resulting in a framework comprised of seven aspects of the research process: research goal, research question, population, context, data synthesis, research management, and dissemination of findings. The framework specifies how participatory approaches not only differ from, but also how they can enhance common approaches in epidemiology. Finally, recommendations for the further development of participatory approaches are given. These include: enhancing data collection, data analysis, and data validation; advancing capacity building for research at the local level; and developing data synthesis. Conclusion: The proposed framework provides a basis for systematically developing the emergent science of participatory epidemiology

Impact of health insurance status among migrants from sub-Saharan Africa on access to health care and HIV testing in Germany: a participatory cross-sectional survey

Background Among all newly diagnosed HIV cases in Germany in 2015, 16% originated from sub-Saharan Africa. Twelve percent of these infections were contracted within Germany and migrants from sub-Saharan Africa (misSA) are diagnosed later than Germans. Migrants, specifically those without health insurance, face many barriers accessing health care due to their residence status and cultural, socio-economic, legal and linguistic barriers. We assessed whether misSAs’ access to healthcare and utilization of HIV testing services depends on their health insurance status to inform prevention strategies. Methods From January 2015 to February 2016, we conducted a cross-sectional survey on knowledge, attitude, behavior, practice (KABP) regarding HIV, viral hepatitis and sexually transmitted infections among misSA in Germany. The survey was a community-based participatory research project; trained peer researchers recruited participants through outreach. To detect differences between participants with a regular health insurance card compared to asylum seekers with a medical treatment voucher or participants without health insurance or medical treatment voucher, unadjusted and adjusted Odds Ratios, chi-squared tests and 95% confidence intervals were calculated. Results A total of 1919 cases were considered. Overall, 83% had a health insurance card, 10% had a medical treatment voucher and 6% had no health insurance. Participants living in Germany for less than 5 years were less likely to have a health insurance card and more likely to have lower German language skills. Participants without health insurance visited a physician in case of health problems less often than participants with medical treatment voucher or a health insurance card (41.2% vs. 66.1% vs. 90%). Participants without health insurance reported less frequently visiting physicians or hospitals and were less likely to undergo a HIV test. Conclusion Having no health insurance or medical treatment voucher decreased the odds of contact with the healthcare system more than other socio-demographic characteristics. Furthermore, misSA without health insurance had lower odds of ever having done an HIV test than participants with health insurance. To increase health care utilization and testing and to ensure adequate medical care, all migrants should get access to health insurance without increasing costs and consequences for residence status.Peer Reviewe

Die Gesundheit von Kindern und Jugendlichen mit Migrationshintergrund in Deutschland - Querschnittergebnisse aus KiGGS Welle 2

Von den in Deutschland lebenden Minderjährigen haben über ein Drittel (36,5 %) einen Migrationshintergrund. Basierend auf den Daten der zweiten Folgeerhebung der Studie zur Gesundheit von Kindern und Jugendlichen in Deutschland (KiGGS Welle 2, 2014-2017) wird die gesundheitliche Lage von 11- bis 17-Jährigen mit und ohne Migrationshintergrund anhand ausgewählter Indikatoren beschrieben. Da Kinder und Jugendliche mit Migrationshintergrund eine in sich vielfältige Gruppe darstellen, werden die Gesundheitsindikatoren nicht nur nach dem Vorliegen eines Migrationshintergrundes, sondern auch nach weiteren migrationsbezogenen Merkmalen stratifiziert. Darüber hinaus erfolgt in den einzelnen Subgruppen eine Differenzierung der Ergebnisse nach soziodemografischen Merkmalen. Im Hinblick auf die Selbsteinschätzung des allgemeinen Gesundheitszustandes sowie der ambulanten Inanspruchnahme pädiatrischer und allgemeinmedizinischer Leistungen bestehen keine Unterschiede zwischen den 11- bis 17-Jährigen mit und ohne Migrationshintergrund. Demgegenüber zeigen sich migrationsbezogene Unterschiede im Gesundheitsverhalten. Während Kinder und Jugendliche mit ein- sowie beidseitigem Migrationshintergrund häufiger als Gleichaltrige ohne Migrationshintergrund von Übergewicht (einschließlich Adipositas) betroffen sind, konsumieren sie seltener Alkohol in riskanten Mengen. Zudem konnte gezeigt werden, dass die Outcomes der untersuchten Indikatoren nach migrationsbezogenen und soziodemografischen Merkmalen variieren

Kultursensible HIV/STI-Prävention bei Sexarbeiterinnen mit Migrationshintergrund

Hintergrund: Frauen, die migrieren und in der Sexarbeit arbeiten, haben ein erhöhtes Risiko, sich mit STI oder HIV zu infizieren. Im Rahmen einer Expertenbefragung wurden Aspekte kultursensibler HIV/STI-Prävention bei Sexarbeiterinnen (SW) mit Migrationshintergrund untersucht. Methodik: Es wurden Leitfaden-gestützte Interviews mit 12 Expertinnen in Berlin durchgeführt und ausgewertet. Ergebnisse: Kultursensible HIV/STI-Prävention beinhaltet die Vermittlung von Wissen zu HIV/STI und Frauengesundheit, niedrigschwellige und aufsuchende Angebote, (mehr-)sprachliche und (inter-)kulturell kompetente sowie klientenzentrierte Beratungsangebote. Auch strukturelle Faktoren, die Vulnerabilität und Schutzverhalten beeinflussen, müssen berücksichtigt werden. Schlussfolgerungen: Kultursensible HIV/STI-Prävention für SW mit Migrationshintergrund baut auf Grundsätzen und Angeboten auf, die sich in der Prävention für SW allgemein bewährt haben. Zusätzlich gilt es die spezifische Situation und Bedürfnisse von Migrantinnen zu berücksichtigen, z. B. im Hinblick auf Informationen zu Frauengesundheit und anderen Aspekten des Lebens und Arbeitens in Deutschland.Background: Women who migrate to engage in sex work are at increased risk for infection with HIV and STIs. This study examines aspects of culturally sensitive HIV/STI prevention for female migrant sex workers. Methods: Semi-structured interviews with 12 experts (representatives of NGOs and health authorities) were conducted and analysed. Findings: Culturally sensitive HIV/STI prevention services address women’s health issues and the provision of sex education as well as specific information on HIV and STIs. Outreach and low-threshold services are crucial to reach the women. Language skills and cultural competency are needed as well as cultural mediators and the training of sex workers as peer educators. Structural factors that affect vulnerability and protective behaviour need to be addressed. Conclusion: Culturally sensitive HIV/STI prevention services for migrant sex workers build on the principles and services that work well for sex workers in general. Additionally, the specific situation and needs of migrants need to be considered and information on women’s health and on other aspects of living and working in Germany should be provided

Knowledge, Attitude, Behavior, and Practices Regarding HIV, Viral Hepatitis, and Sexually Transmitted Infections Among Migrants From Sub-Saharan Africa Living in Germany: A Multicenter Survey Protocol

Background: Migration has an impact on the epidemiology of viral hepatitis B and C (HEP) and HIV in Germany; migrants from sub-Saharan Africa (MisSA) in Germany are disproportionally affected by HIV. In the last 10 years, a total of 10%-15% of all newly diagnosed HIV cases were among MisSA; 20%-30% of them acquired HIV in Germany. Prevalence of HEP among MisSA in Germany is unknown, but Western Africa, from where most MisSA in Germany originate, reports the highest prevalence of hepatitis B worldwide. There is limited information on knowledge, attitudes, behaviors, and practices (KABP) regarding HIV, HEP, and sexually transmitted infections (STIs), as MisSA are not reached with surveys targeting the general population. Objective: Our objective was to determine the HIV, HEP, and STI information and prevention needs of MisSA in Germany. Methods: We conducted a multicenter, cross-sectional, KABP survey regarding HIV, HEP, and STIs among MisSA living in Germany using convenience sampling. The study design was developed as a community-based participatory health research (CBPHR) project; HIV/STI-prevention specialists, key persons from MisSA communities, and HIV/STI researchers were involved in all steps of the research process. Trained peer researchers recruited participants in six study cities. Potential modes of survey administration were interview or self-completion, and the questionnaire was available in English, French, and German. Questions on knowledge about HIV, HEP, and STIs were presented as true statements; participants were asked if they had known the information before. Focus groups with MisSA were conducted to interpret results. Data collection took place from October 2014 to November 2016. Results: Recruitment by peer researchers concluded with 3040 eligible participants. Data collection was completed in November 2016. We are currently analyzing the quantitative data and qualitative data from focus groups. We are conducting working group meetings to discuss the results in the respective study cities and to evaluate the application of participatory health research in epidemiological studies. First results are expected by the end of 2017. Conclusions: Working with peer researchers to collect data allowed accessibility to a diverse sample of MisSA and, particularly, allowed us to reach vulnerable subgroups, such as MisSA without legal status. The ability to access hard-to-reach groups is one of the big advantages of CBPHR. The active inclusion of the persons under study in the design of the study resulted in higher acceptance and ownership of the research project in the target community; this ultimately lead to better quality of collected data. Furthermore, the participation of MisSA in the development of study design and data collection assures a better understanding of the interests, needs, and living conditions of this group

Dataset: Knowledge, information needs and behavior regarding HIV and sexually transmitted infections among migrants from sub-Saharan Africa living in Germany: Results of a participatory health research survey.

This dataset has been described in a PLoS One paper and contains all data necessary to replicate the results presented within this paper. Please cite both the paper as well as the DOI of this dataset if you make use of the data

The health of children and adolescents with a migration background in Germany – Results of the cross-sectional KiGGS Wave 2 study

Over a third (36.5%) of young people living in Germany have a migration background. Based on the data of the second follow-up to the German Health Interview and Examination Survey for Children and Adolescents (KiGGS Wave 2, 2014-2017), the health situation of 11- to 17-year-olds with and without a migration background is described using selected indicators. In order to account for the diversity among children and adolescents with a migration background, the health indicators used in this study are stratified by migration background but also by additional migration-related characteristics. In addition, the results from the various subgroups are also stratified by sociodemographic characteristics. No differences in self-assessed general health or the outpatient utilisation of paediatric and general medical services were identified between 11- to 17-year-olds with and without a migration background. However, migration-related differences were identified in health behaviour: whereas children and adolescents with a one- or two-sided migration background are more frequently overweight (including obesity), they consume risky amounts of alcohol less often than those of the same age without a migration background. Finally, the outcomes of the indicators also vary according to migration-related and sociodemographic characteristics.Peer Reviewe

What is participatory epidemiology? A definition

Die partizipative Epidemiologie ist ein Konzept, das die aktive Einbeziehung und möglichst gleichberechtigte Zusammenarbeit von Forschenden und Beforschten in einzelnen Abschnitten oder im gesamten epidemiologischen Studienverlauf vorsieht. Sie umfasst folgende Aspekte: die kooperative Definition von Forschungszielen und Forschungsfragen, die partnerschaftliche Bestimmung zu erforschender Bevölkerungsgruppen und deren gesundheitsrelevanter Lebenswelten, die Auswahl oder Entwicklung angemessener Erhebungsinstrumente sowie dialogische Formen der Ergebnisinterpretation. Die partizipative Epidemiologie zielt auf die Schaffung von Erkenntnissen mit praktischer Relevanz für alle Beteiligten.Participatory epidemiology is a concept that promotes the active involvement and cooperation of researchers and researched populations. The collaboration may relate to individual sections or to the entire course of an epidemiologic study. Participatory epidemiology comprises the following aspects: a joint definition of research objectives and research questions, the cooperative definition of the population groups under study and their health-related contexts, the selection or development of appropriate survey instruments, and dialogical forms of interpreting the results. Participatory epidemiology aims to create knowledge with practical relevance to all stakeholders.Peer Reviewe