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

Abstract

Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child’s needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the ‘evidence base’, making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children’s perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach.

Child and family experiences of a whole-systems approach to physical activity in a multiethnic UK city: a citizen science evaluation protocol

“…The body sort exercise73 77 80 will take the form of a workshop activity with the citizen scientists. Cards will prompt key participant experience elements (eg, power relations, inclusivity) in an age-appropriate format.…”

“…Given the status granted to the citizen scientists, it seems incongruous not to allow them to provide their consent to take part in the project. 80 As a result, to meet institutional ethical standards, both the children (citizen scientists) and their families will be required to give informed consent before any child’s participation in the research. If any safeguarding concerns are raised as part of the research project, the university’s safeguarding procedures will be followed.…”

“…However, as researchers under the age of 16 years, their consent alone is not legally adequate, and parent or guardian consent must be provided prior to research participation. Given the status granted to the citizen scientists, it seems incongruous not to allow them to provide their consent to take part in the project 80. As a result, to meet institutional ethical standards, both the children (citizen scientists) and their families will be required to give informed consent before any child’s participation in the research.…”

Child and family experiences of a whole-system approach to physical activity: a citizen science evaluation protocol

“…The body sort exercise(79, 86) will take the form of a workshop activity with the citizen scientists. Cards will prompt key participant experience elements (e.g.…”

“…However, as researchers under the age of 16, their consent alone is not legally adequate, and parent or guardian consent must be provided prior to research participation. Given the status granted to the citizen scientists, it seems incongruous not to allow them to provide their consent to take part in the project (86). As a result, to meet institutional ethical standards, both the children (citizen scientists) and their families will be required to give informed consent before any child’s participation in the research.…”