Involving South Asian children in the UK with asthma in intervention design: reflections from the Management and Intervention for Asthma study

Commentary of key considerations to take into account when involving children in health intervention design

A recent commentary paper, led by Centre member Professor Monica Lakhanpaul, has outlined learnings from the Management and Intervention for Asthma (MIA) study about how to include children in health intervention design.

Involving community members in research to help enhance the researchers’ understanding of the social and environmental factors impacting the area of study has been increasingly embraced over recent years. Despite being included on Patient and Public Involvement panels, involving children in other types of participatory research is still relatively novel, and the UK ranks poorly compared to other countries when it comes to providing an enabling environment for children’s rights.

Understanding the needs of specific communities is a way healthcare professionals can tailor treatment and interventions so they can be as effective as possible. The Management and Intervention for Asthma (MIA) study aimed to uphold these values and involved South Asian children diagnosed with asthma in designing their health intervention.

Findings from the MIA study

The MIA study aimed to develop a framework for planning interventions directed towards South Asian children with asthma in the UK. When planning how to involve children in their research, the study found the following elements needed to be considered:

• Power dynamics between the adults and children involved
• Consent/Assent
• Parental involvement: for example, whether the presence of parents could influence the study
• Time and location
• Engagement: adapting the methods of research so children can feel most engaged in the discussion, and considering having facilitators with personal experience of the disease, or be from a similar ethnic background to the children
• Diversity of needs: considering the specific demographics and levels of socio-cognitive development within the study group
• Ethnicity and culture: having an approach of cultural humility, where researchers are self-evaluating and self-critiquing to maintain mutually respectful, dynamic partnerships

Considering these elements has allowed the MIA study to be tailored to the needs of children while effectively respecting ethnic diversity, creating a highly reflective and inclusive approach. The researchers recommend that these principles are acknowledged by the paediatric research community in order to provide the best care possible for all children.

Professor Monica Lakhanpaul, member of the Centre, led this study and was lead author on this paper. She said:

If we are to improve asthma outcomes for children and young people, we need to give children a voice in designing their own services and treatments that they receive. We hope that by sharing our experiences and learnings with others we can promote a more inclusive and collaborative approach and support researchers in engaging with children and young people in a meaningful and effective way.

Read the paper

This publication is available from the BMC Research Involvement and Engagement

Cite as

Nixon, L.S., Hudson, N., Culley, L. et al. 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. Res Involv Engagem 8, 9 (2022). https://doi.org/10.1186/s40900-022-00342-0