Abstract:
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex chronic medical condition, affecting up to 2% of secondary school aged children in the UK (Collard & Murphy, 2020). It is an illness that has historically been contested and is widely misunderstood, contributing to negative stereotyping and stigma (Blease et al, 2017). Together with the physical symptoms of a complex illness, this has significant implications for the school experiences of young people with ME/CFS.
Using a social constructionist framework that recognises that knowledge creation is a shared enterprise, this research adopts a social justice perspective, which shapes the entirety of the research process.
Adopting Narrative Inquiry as a methodology, this study explores the stories constructed by three young people with ME/CFS, aged between sixteen and seventeen, in relation to their school experiences. The young people used audio or written diaries to construct their narratives and participate in an optional follow up reflective interview.
The young people’s narratives were analysed using the Listening Guide (Brown & Gilligan, 1993), a ‘Voice Centred Relational Method’, revealing the complex, unique and subjective nature of individual experience. Bronfenbrenner’s ecological systems theory (1979) and Ryan and Deci’s Self-determination theory (2017) were used as explanatory frameworks to illustrate the findings, which indicated that understanding, communication and flexibility of adaptations were key factors shaping the young people’s experiences of school. A model for practice has been created for Educational Psychologists to consider using with schools, in order to identify factors within the young people’s environmental systems that could be addressed to promote a positive school experience.
This dissertation concludes with considerations of how narrative approaches can be used to guide the work of Educational Psychologists. Implications for professional practice have been shared, highlighting the importance of viewing the needs of young people with ME/CFS holistically, and adopting a person-centred approach.
Source: Lewis, Mariana L. A narrative inquiry into the school experiences of teenagers living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Educational Psychology Thesis (DEdPsy). University of Bristol. https://research-information.bris.ac.uk/ws/portalfiles/portal/349168131/Final_Copy_2022_12_06_Lewis_M_L_DEdPsy.pdf (Full text)