Including ‘seldom heard’ voices in longitudinal qualitative research

Kathryn Asbury and Vanita Sundaram, University of York

In preparing for its new UK-wide cohort study – the Early Life Cohort – the ESRC acknowledged the under-representation of certain groups, which they referred to as ‘seldom heard’ groups, in national cohort studies. They wanted to explore the possibility of a more inclusive parallel qualitative longitudinal study and so they commissioned two scoping reviews, each focused on two ‘seldom heard’ groups. In this talk we present our scoping research which focused on families with a learning disabled child and families with experience of domestic violence. Through systematic literature reviews and interviews with professionals and parents, as well as some child observations, we developed a set of recommendations for the ESRC. Our findings strongly supported the importance, acceptability and feasibility of conducting longitudinal research with these groups and our overall recommendation was that qualitative longitudinal research with ‘seldom heard’ families must be done, but it must be done right. Doing it right (i.e. ethically, safely, respectfully and successfully) involves research that is: built on trusted relationships; flexible and personalised in all aspects; and co-produced with people who have relevant lived experience. Our findings aligned well with those of the other scoping review which took place at the University of Sussex. The ESRC is not currently planning to proceed with a parallel study to the Early Life Cohort and in this talk we will reflect on the lessons learned for them and for us.