Emma Damne
University of Gothenburg

When planning my master’s thesis in Public Health I came in contact John Chaplin, PhD, who offered to be my supervisor. He introduced me to Patient-Reported Outcome Measurement (PROM) and the work he is involved in the inclusion of the children’s voice in person-centred care. I have always been a supporter of children’s ability to advocate for themselves and was surprised when I realised that in some contexts it is not standard to ask children about their health and well-being, instead the adult would turn to an adult proxy. My initial research led me to be curious about Young Persons Advisory Groups and other practices that have taken a step further to truly engage and give children the chance to impact matters that concern them.

Furthermore, I often think about how all the research that is conducted can be translated into practice. The literature confirmed that many researchers see the positive effects of engaging children, but they lack tools on how to do it. Therefore, I decided to do my study about how children are engaged in health research.

Conducting both a scoping review and interviews with experts on children’s engagement, I was able to answer how and with which strategies children are engaged in health research. The study focused on all parts of the engagement process, from recruitment to research activities. In line with existing research, I found examples of children being engaged in all stages of research through both giving feedback and conducting research tasks. Additionally, the result suggests the importance of the need to carefully plan each step of the engagement process according to the needs of the project and the purpose of engagement. Working together with an experienced facilitator could help in both planning and managing the engagement. Researchers also need to be open minded to the children expressing themselves in different ways than adults, and flexible enough to adapt to the children’s needs as necessary. Reported complexities, such as limited resources, practicalities, and building a relationship with the children, are similar to previous findings, but this study also identified the challenge of retaining recruited children and matching research activities to the needs of the study.

All this may sound as a given, but evidently it is not. The study contributes to the yet novel field of children’s engagement by presenting several examples of characteristics of research activities children are engaged in, and the obstacles that come with them. Nowadays, when the work to advance the science of quality of life (QOL) and related patient-centred outcomes (PCO) intensifies to meet the trend of more patient-centred care, I am of the opinion that children should be given the chance to contribute, and researchers need the skills to make that happen.

Abstract will be presented in the Friday Morning Poster Presentations: Slot 2 on 21 October, 9:55 am – 10:10 am. 

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.