‘Engaging Children in Health/Illness Research’: our next workshop 23 March

The next Network workshop will be held on 23 March, with the topic of ‘Engaging Children in Health/Illness Research’ – a new and exciting topic for the Network to sink its teeth into.

When: 23 March, 5 p.m.
Where: Practice Suite, Floor 1 Chrystal Macmillan building

About the workshop:

Despite recognition of the importance of listening and consulting with children regarding their healthcare, children’s accounts regarding their own health and their involvement in associated care is under examined. In this workshop we will look at how we can engage children in research regarding their health, and in particular chronic illness (namely childhood epilepsy*), as well as exploring barriers to such research, including ethical concerns and access issues. Furthermore, we will reflect on data gathered in this context to explore wider childhood studies discussions around competencies and agency.
*Childhood epilepsy is a complex, neurological condition. It holds a variety of implications for the child with epilepsy and their family beyond seizures; including intricate and multidimensional care arrangements.

Our speaker will be Rebecca Black, a PhD student at Child Life and Health, whose work serves as the backdrop for this workshop. The event will prove to be valuable to researchers both inside and outside a health context, with plenty of engaging discussion. We hope to see you there!


Making spaces for tackling childhood and youth inequalities

Creating transformative partnerships through participatory action research 

by Dr. Marlies Kustatscher

My talk to the Network in January was a reflection on the early stages of a participatory action research project with my co-principal investigator Kristina Konstantoni and Co-Is Liam Cairns, John Davis and Akwugo Emejulu.

The research project has been initiated by a group of young people (aged 10-18) and involves them as co-researchers in a participatory action research. We had worked with this group of young people before, through Investing in Children, and as part of a knowledge exchange project on Children’s Rights, Social Justice and Social Identities in Scotland that sought to explore young people’s experiences of intersectional discrimination. With our current project, we hope to take this knowledge forward through a participatory, change-oriented process.

Our research project has two layers: it seeks to examine a) young peoples’ views and experiences of intersectional discrimination in their schools and ways of tackling discriminatory practices, and b) the processes by which meaningful and transformative partnerships (between interdisciplinary researchers, young people, organisations and practitioners) can be established with the aim to effect change in the young people’s lives.

Being involved in this project and working closely with young people and Investing in Children colleagues is inspiring and fun – but we are also experiencing hands-on the messy, unpredictable and challenging nature of participatory action research processes.

Such challenges include, for example, the complex chronology of stages in our research design. While ‘traditional’ social research (if there ever was such a thing) might assume a more or less linear trajectory from research idea, design, securing funding, to ethics application and finally participant recruitment and the implementation of the research design, our project defies this chronology through its fluid and evolving nature.

We are caught up in the tensions of viewing young people as vulnerable and in need of protection, whilst at the same time seeking to create spaces that enable their participation (e.g. when needing to justify our use of terms such as ‘social justice’ that had been suggested by the young people themselves). We also find ourselves confronted with navigating the tension between our ideals of ‘thinking participation’ and the practicalities of ‘doing participation’, which involve complexities of research roles (who is researcher/participant, or both?), questions of data management (who generates, and has access to, which kinds of data?) and the general process of negotiating power dynamics and decision-making.

Clearly, we are not the first researchers to experience these tensions, and the writing of others has been incredibly helpful (e.g. Skelton 2008, Holland et al. 2010, Houghton 2015, community-based alternative research ethics suggestions).

However, perhaps it is the case that these challenges and tensions can never be resolved, but it is only through the struggle and process of every single research project that we can be working towards participation.