Learning from hard-to-reach participants: Methodological and cultural values in researching educational biographies of Black and Minority Ethnic young people with long-term conditions

Abstract

This paper reports on a study into the educational biographies of young people of Black and Minority Ethnic (BME) background with inflammatory bowel disease (IBD). Evidence indicates that BME communities are encountering increased prevalence of IBD yet there is a paucity of research relating to ethnicity and IBD. While research on this topic has been conducted in the USA, this is the first study of its kind in the UK. Wider findings from the study have been published elsewhere (Alexakis et al., 2015) and the current paper takes a more detailed look at the methodological and cultural lessons learnt from researching hard-to-reach participants. The study was commissioned by the national charity Crohn’s and Colitis UK to develop understanding of the issues and needs of young people with IBD from BME communities. A qualitative methodology was adopted with the aim of giving a voice to BME young people and gaining experiential data on how IBD affects their daily lives. Twenty BME people aged 16-24 were recruited through three NHS Trusts in England and participated in in-depth interviews with one of two researchers from the University of Hertfordshire. The paper examines the particular educational challenges faced by BME young people as a result of their long-term condition. With the majority of them experiencing disruption to their education due to poor health, the great value commonly placed on education by the participants, and more significantly by their parents, meant that IBD came to be conceptualised as ‘a weakness’. Participants told of the pressure placed on them by parents, some of whom were first generation migrants, to succeed in education. First generation migrants’ endeavours to overcome economic hardship tended to be foregrounded, while other issues, such as ill-health, were seen as impacting negatively on efforts ‘to get out of poverty’ and thus receded in importance. Such was the high value attached to succeeding in education that schools attended by some participants were not informed of their IBD diagnosis, making for difficult educational experiences. Home-school relations impacted on young people’s educational journeys in different ways with negative and positive consequences. The research provides insights into strategies of resilience among young people. Participant narratives revealed a number of ethnicity-specific issues such as the desire to avoid conflict with cultural values and traditions. The paper examines the implications of interviewing across ethnic differences and discusses the role of values and methodological reflexivity in generating research findings.