Children Join Health Research in Germany, but Adults Still Hold the Reins

When researchers want to understand children’s health, the most radical thing they can do may be the simplest: ask children to help run the study itself. That is the premise of participatory health research and promotion, a family of methods that treats young people not as passive subjects to be measured but as co-investigators who frame questions, gather data, and interpret what the results mean. A new scoping review from Bielefeld University’s School of Public Health has now provided the first systematic overview of how this approach is actually practiced with children in Germany, and its findings reveal a field that is growing in legitimacy while still struggling with a fundamental tension between its egalitarian ideals and its day-to-day realities.

The review, published in Health Research Policy and Systems by Janna Landwehr, Hanna Luetke Lanfer, Miriam Schierenbeck, and Leonie M. Heim-Scheffel, set out to map the landscape of participatory health research and promotion with children under the age of eighteen in Germany. The team followed the established scoping review framework of Arksey and O’Malley and adhered to PRISMA reporting guidelines, searching four databases in March and April 2024 and supplementing the results with snowballing techniques. They included empirical projects conducted between 2000 and 2024 in Germany, plus two projects from German-speaking Switzerland, that explicitly applied participatory approaches with children and addressed health-related topics. Medical intervention studies and studies limited to clinical patient groups were excluded, keeping the focus on community and public health settings.

The methodological machinery behind the review deserves attention because it reflects the field’s own standards. Data extraction relied on a structured codebook adapted from the International Collaboration for Participatory Health Research, an international network that has worked to formalize how participatory projects are described and evaluated. The codebook focused on four dimensions: the objectives of each project, the actors involved, the phases of the research process in which children participated, and the reflections offered by the original study teams. Two reviewers coded every report independently, a standard safeguard against subjective interpretation. After screening, twelve projects documented in twenty-three publications met the inclusion criteria, a modest corpus that itself says something about how sparsely this work has been reported.

What emerged from those twelve projects is a picture of participatory research that is thriving in some dimensions and underdeveloped in others. Most projects were situated in educational or communal contexts, such as schools and neighborhoods, rather than clinics or laboratories. Health-related objectives were consistently reported, and they often centered on behavioral change, for example encouraging children to move more, eat differently, or adopt healthier habits. That orientation is telling: the health goals of participatory projects frequently mirror the goals of conventional health promotion, with participation serving as a vehicle for delivering interventions rather than as an end in itself.

Participatory objectives, by contrast, were less frequent and often remained implicit. In several projects, the researchers never explicitly defined what the children were supposed to gain from participating or what degree of influence they would hold over the research process. Even more striking, participatory goals were rarely defined together with the children themselves, which raises an obvious paradox: a methodology premised on shared decision-making frequently decided, in advance and without consultation, what participation would mean. The review suggests that this vagueness is not merely a reporting problem but may reflect genuine uncertainty among research teams about how to operationalize collaboration with young people.

The structure of participation also mattered. Children typically participated alongside other adults, such as teachers, parents, or community workers, and only rarely formed the sole group of non-academic actors in a project. This mediating arrangement is understandable in practical terms, since adults often facilitate access, logistics, and ethical safeguards, but it means that children’s voices frequently arrived at the research table already filtered through adult intermediaries. The review found that participation was usually concentrated in operational phases of research, such as data collection, where children might conduct interviews with peers, take photographs, or lead mapping exercises. Involvement in conceptual phases, including defining research questions, analyzing data, and disseminating findings, was uncommon. In other words, children were often trusted to execute the work but seldom to steer it.

One of the most vibrant aspects of the German practice landscape is its methodological creativity. The reviewed projects widely used creative and arts-based techniques, including photovoice, in which children photograph their everyday environments and discuss the images; theater, in which experiences are enacted and explored; and drawing, which allows younger children to express perspectives that verbal interviews might miss. These methods are more than charming accessories. They are grounded in developmental reasoning: children’s competence to contribute to research depends on the formats through which they are invited to contribute, and visual, embodied, and playful media can shift the balance of expertise from the adult researcher toward the child. Their prevalence in the reviewed projects suggests that German teams have absorbed this lesson well, even when other dimensions of participation lagged behind.

The reflective dimension of the projects, where teams examine their own practice, showed a clear pattern of emphasis and omission. Reflections focused mainly on ethics, informed consent, and child protection, which are undeniably essential when minors are involved in research. Yet reflections on sustainability, on power relations between adults and children, and on the benefits children themselves perceived from participating were seldom addressed. This gap matters because power is the central currency of participatory research. A project can obtain every consent form and still reproduce hierarchical dynamics in which adults define the agenda, interpret the data, and claim the findings. Without deliberate attention to how power operates, the review implies, participation risks becoming a label rather than a practice.

The review also identified a systemic weakness that extends beyond any single project: reporting practices were often vague, limiting systematic assessment. Study teams described their work as participatory without specifying who decided what, at which stage, or how disagreements were resolved. This imprecision makes it nearly impossible to compare projects, accumulate evidence about what works, or hold the field accountable to its own standards. The authors argue that greater transparency in reporting participatory processes is essential to strengthen cumulative knowledge and to design genuinely meaningful, child-centered approaches. In a field whose legitimacy rests on the claim that participation improves research, opaque reporting undermines the very evidence base that justifies the approach.

The broader context gives this work its urgency. The United Nations Convention on the Rights of the Child recognizes children as rights-holders and social actors, and this framing has given participatory health research with children increasing legitimacy over the past two decades. Germany, with its strong tradition of childhood pedagogy and public health, might seem poised to lead in this area, yet the review shows the field remains small, unevenly documented, and dominated by health goals over participatory ones. The Bielefeld team, which conducted the review without external funding as part of the first author’s doctoral dissertation, has effectively drawn the first reliable map of the territory. The map shows a field that has gained traction but has not yet fully handed children the pen. For researchers, funders, and ethicists, the message is clear: the next generation of participatory projects will be judged not only by what children helped produce, but by whether children helped decide what was worth producing in the first place.

Subject of Research: Participatory health research and health promotion with children in Germany

Article Title: Participatory health research and promotion with children in Germany: a scoping review

Article References: Landwehr, J., Luetke Lanfer, H., Schierenbeck, M., & Heim-Scheffel, L. M. (2026). Participatory health research and promotion with children in Germany: a scoping review. Health Research Policy and Systems. https://doi.org/10.1186/s12961-026-01544-8

Image Credits: AI Generated

DOI: 10.1186/s12961-026-01544-8

Keywords: participatory health research, health promotion, children, scoping review, Germany, UN Convention on the Rights of the Child, photovoice, child participation, research ethics, health equity, Bielefeld University, power relations