Is it possible to consult children to design a research project?

In a previous blog post, I talked about the importance of having patients help conduct research projects that aim to impact the kinds of lived experiences they share. But is patient engagement possible with research focusing on children?

Often, pediatric health research teams will invite parents as patient engagement in their projects since parents are essential to decision-making about a young patient’s care. Child health is highly dependent on parents’ understanding of, and access to, their healthcare. Sometimes parents of children with more complex and rare illnesses even assume a nursing role for their children at home, which could make them even more knowledgeable about their child’s needs than some providers they see.

However, we can’t forget that youth are their own people who are attentive and aware about their health and healthcare. Sometimes a young person’s views about their healthcare conflict from their caregivers’. For example, intergenerational differences in views on mental health can lead to parents denying mental healthcare needs for their children. Some children with disabilities need to rely more on their caregivers, especially when they experience discrimination such as lack of acknowledgement and being unwelcomed in practice, and parents are forced to advocate for their children. While many parents strive for their child’s best health, it is important to engage children themselves in pediatric health research.

While many young patients likely could not help with choosing control variables, writing the paper, or statistical analysis, their perspectives can shape how data is disseminated or collected from participants, or intervention design. Focus groups, peer-led interviews, workshops that employ a classroom-like dynamic to make the collaborative research process more accessible to certain age groups. Some researchers have utilized unique approaches to young patient engagement including having children produce drawings, collages, or fictional stories that are reflective of their health-related experiences, which can be particularly helpful for neurodivergent children or gathering nuance on a child’s experiences with marginalization (Gonzalez et al., 2021).

However, researchers prefer to work with parents because ethical considerations invoke caution about engaging children in research. Effectively engaging children can be more difficult because of the more disparate power dynamic between children and adult researchers as compared to parents (Montreuil et al., 2021). This is just one of many unique challenges of patient-oriented pediatric health research. It is still worth every pediatric health researcher’s efforts to optimally represent the needs of the child when they are distinct from parent preferences, and amplify the stories of children who have been underrepresented in the medical literature.

My favorite example of youth engagement in health equity research was headed by Dr. Susana Helm from the University of Hawaii at Manoa. Kānaka Maoli or Native Hawaiians are overrepresented in rural areas and youth are disproportionately affected by substance abuse, one health disparity that is a lingering mark of colonization of Hawaii (Helm et al., 2015). Helm sought to develop a substance use prevention program specific to a rural Hawaiian community by having haumana, or Indigenous youth, use photography to share their stories and inform an intervention grounded in cultural values and principles (Helm et al., 2015). The haumana are recognized as co-authors in these study publications (Helm et al., 2015). This research demonstrates the profound impact of centering patient perspectives in developing knowledge and resources that aims to address their needs, which is the foundation of narrative medicine.

By: Christina Zeng (she/her) | Blog Committee Member

REFERENCES:

Helm, S., Lee, W., Hanakahi, V., Gleason, K., McCarthy, K., & Haumana (2015). Using Photovoice with youth to develop a drug prevention program in a rural Hawaiian community. American Indian and Alaska native mental health research (Online), 22(1), 1–26. https://doi.org/10.5820/aian.2201.2015.1

Gonzalez, M., Phoenix, M., Saxena, S., Cardoso, R., Canac-Marquis, M., Hales, L., Putterman, C., & Shikako-Thomas, K. (2021). Strategies used to engage hard-to-reach populations in childhood disability research: a scoping review. Disability and rehabilitation, 43(19), 2815–2827. https://doi.org/10.1080/09638288.2020.1717649

Montreuil, M., Bogossian, A., Laberge-Perrault, E., & Racine, E. (2021). A Review of Approaches, Strategies and Ethical Considerations in Participatory Research With Children. International Journal of Qualitative Methods, 20. https://doi.org/10.1177/1609406920987962

FURTHER READING:

Stories as findings in collaborative research: making meaning through fictional writing with disadvantaged young people

Giving children a voice through partnership: a child rights-based approach to the co-design of postgraduate nurse education

‘I actually felt like I was a researcher myself.’ On involving children in the analysis of qualitative paediatric research in the Netherlands

‘Just Teach Us The Skills Please, We’ll Do The Rest’: Empowering Ten-Year-Olds as Active Researchers

The INSCHOOL project: showcasing participatory qualitative methods derived from patient and public involvement and engagement (PPIE) work with young people with long-term health conditions

Children's contributions to designing a communication tool for children with cancer

Methodological Issues When Using the Draw and Write Technique With Children Aged 6 to 12 Years

Children as Design Partners in the Development of a Support System for Children with Cancer

Key considerations when involving children in health intervention design: refections on working in partnership with South Asian children in the UK on a tailored Management and Intervention for Asthma (MIA) study

Perspectives of children and adolescents with cerebral palsy about involvement as research partners: a qualitative study