Centering children voices in health research - The Source

source.washu.edu · Feb 23, 2026 · Collected from GDELT

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Across much of modern health research, children are measured — but not always heard. For much of the past half-century, health research has prioritized the quantitative — numbers, test results, trial outcomes, statistical significance — driving remarkable advances in medicine. Yet in a new analysis, researchers argue quantitative methods cannot fully capture the lived experience, needs and preferences of patients, a limitation that becomes especially clear in pediatric health. In children, illness often looks and unfolds differently than it does in adults, shaped by developmental stages, family dynamics, school environments and daily realities. When those factors are overlooked, even proven interventions can falter — not because the science is flawed, but because researchers have not fully understood how children and families experience care. The result can be a disconnect between evidence and impact — reflected in ongoing vaccine-preventable disease, rising mental health needs and persistent nutrition challenges. “The issue isn’t a lack of science,” said Sara Malone, an assistant professor in the School of Public Health at Washington University in St. Louis. “It’s that we don’t always ask the right questions — or the right people.” That premise anchors a paper, with Malone as first author, published in eClinicalMedicine, part of The Lancet family of journals. The paper, “Advancing Child Health Through Applied Qualitative Research,” was developed with an international group of pediatric clinicians and scientists and emerged from a 2024 symposium that examined how qualitative approaches can better inform research across conditions and settings. Malone is also a co-author on three additional papers in a coordinated series in The Lancet on qualitative research. Her work focuses on health-care delivery, behavior change and patient-centered care. Together, the authors called for wider use of qualitative research as a central component of child health science — not an afterthought. Why numbers aren’t always enough In the child health paper, the researchers outlined a central tension: clinical trials show what works under controlled conditions, but not how a child experiences that treatment or why families struggle to follow through once they leave the clinic. A medication may perform well in a trial, for example, but prove difficult for children to take because of taste, delivery method, side effects, stigma or family logistics. A treatment plan can collide with school schedules, transportation barriers or a child’s fear of medical procedures. Qualitative research — drawing on interviews, conversations, observation and storytelling — is designed to make such obstacles clear. Rather than replacing quantitative measures, the authors argued, it complements them. Researchers can tailor their methods based on age, developmental stage, emotional maturity and cultural context. Understanding those barriers can lead to practical changes that improve adherence, effectiveness and long-term outcomes. “Qualitative work helps us understand the things that happen outside the exam room,” Malone said. “Those are often the very factors that determine whether care actually works for a child and their family.” Even in rare or highly specific situations, qualitative research can produce insights that apply more broadly. For example, understanding how parents make treatment decisions for a child with a fatal cancer can help clinicians support families facing other life-threatening illnesses. The authors note that such approaches may be especially important for understanding disparities affecting marginalized children, including sexual and gender-minority youth, children with disabilities, and immigrant or refugee children. Without directly talking with children in these communities, researchers risk missing critical barriers to care, they said. Listening to children directly Historically, pediatric research has often been conducted through caregivers, meaning children’s voices are frequently missing. In many settings, legal, cultural or structural constraints further limit children’s direct participation. International standards recognizing children’s rights have not been universally adopted. Children have long been viewed as unable to fully articulate their own experiences. That view is shifting, with growing recognition that children and adolescents are active participants in their own health. Still, Malone noted, skepticism lingers. “We worry about whether children are reliable reporters,” she said. “But adults aren’t always reliable either.” In her own work, Malone has seen how differently adolescents and parents may describe the same experience, particularly around sensitive areas such as stigma or emotional distress. “Sometimes, it’s the parent who gets it wrong, not the child,” she said. “Especially as kids get older, they don’t necessarily share everything with adults.” The paper argued that children’s perspectives are distinct and necessary — shifting research from speaking for children to working with them. Qualitative approaches offer tools to gather such insights directly. For younger children, methods may include play-based or visual techniques. For adolescents, interviews or digital formats may be more appropriate. Studies using these approaches have helped explain how children understand illness, cope with treatment, develop trust in health-care teams and decide whether to follow care plans. Those insights can translate into better communication, stronger clinician–patient relationships and more responsive care. Designing research with children in mind The authors argued that research with children must be tailored to their developmental, relational and ethical needs. Engagement should extend throughout the research process. Involving children, families and communities early, the authors said, can reveal gaps that adult-driven research priorities often miss and inform decisions about interventions, measures, recruitment and implementation. Designing research with children in mind requires careful attention to language and cognitive development. Researchers must seek assent in age-appropriate ways, alongside consent from a parent or guardian, and safeguard confidentiality, the authors said. Research with children also must account for caregivers, whose involvement can shape what children feel comfortable sharing. Well-designed studies may use tailored approaches, such as interviewing children and caregivers separately. In practice, Malone said, “working with kids is actually the easy part.” Navigating parental concerns and family dynamics can be more complex. The authors stressed the importance of intentionally recruiting voices that are often overlooked, especially among marginalized and unrepresented children to ensure research reflects the diversity of pediatric experiences. When done thoughtfully, Malone said, qualitative work “can help us ask better scientific questions, get better data and improve outcomes” across conditions and settings. From insight to impact How research findings are shared can determine whether they lead to real change. Human-centered narratives are often more relatable and memorable than technical data, making them easier to communicate beyond academic audiences. They also argued that dissemination should not end with journal publication. Involving children in reviewing and responding to findings can help ensure interpretations reflect their lived experiences and reinforce their role as contributors. Beyond interpretation, results should be shared directly with the children, adolescents and families who contributed, creating opportunities for meaningful two-way exchange. When appropriate, children may also choose to help share findings, as long as safety and privacy are protected. Structural barriers remain Despite its promise, qualitative research still faces structural barriers. Many journals favor quantitative studies, a bias the authors warned can further sideline children’s voices. They called on editors and reviewers to better recognize qualitative work. Funding poses a similar challenge. To close those gaps, the authors called on funders to create dedicated support for qualitative child health research; rethink how proposals are evaluated; and include reviewers with expertise in child-centered methods. They also suggested building qualitative components into some clinical trials and traditionally quantitative studies. Advancing this work, they argued, will also require stronger training, mentorship and infrastructure. A framework for change Drawing on discussions from the 2024 symposium, the authors developed a practical framework to guide high-quality qualitative research in child and adolescent health. The framework emphasizes five core principles: engagement, flexibility, transparency, transferability and impact. It provides a practical roadmap for involving children meaningfully, adapting to developmental context, documenting decisions clearly and producing findings that inform care, programs and policy. Ultimately, Malone and her colleagues argued, improving child health depends on taking children’s experiences seriously. Listening to children — and designing research that reflects their lives — is a necessary step toward care that truly works for families.