Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease

Abstract

This article explores the challenges and adaptations we undertook to engage people with different communication needs, specifically those living with motor neurone disease (MND), in qualitative research interviews. While interviewing those in advanced stages of illness has raised ethical concerns, participants continue to report value in contributing to research. We reflect on our experiences of conducting qualitative interviews with people living with MND and provide guidance for researchers facing similar challenges. MND significantly impairs communication abilities, impacting speech, gestures, and facial expressions. Communication aids such as augmented and alternative communication (AAC) devices are often key tools for communication. We draw on two research studies using expanded interview techniques to accommodate these devices and provide space for participants to express their views. Interview methods were modified to cater for participant fatigue, setting and individual communication needs. While acknowledging the limitations, we explore how digital platforms, such as MS Teams and Zoom, enabled online interviews, offering advantages for both participants and researchers. Joint interviews involving participants and family members were found to be crucial, considering the interdependence of experiences in illness. Family members often aided communication and enriched data by providing context. Email interviews were another valuable method, allowing participants time to respond and consider their answers, which was particularly useful for those with limited speech. By incorporating a variety of qualitative methods and adapting approaches, we aimed to create inclusive and meaningful research experiences for individuals with different communication needs, ensuring their voices and experiences were captured effectively.