The ‘Collaborative Personal Statement’: a more inclusive method of data-gathering than audio recording interviews with vulnerable people

Abstract

Inclusive research with people with learning disabilities often involves audiorecording interviews. However, although barely acknowledged in the literature, participants may not understand that every word recorded will be scrutinised forensically, from which possibly erroneous conclusions may be drawn. This paper describes an alternative method: the 'Collaborative Personal Statement' (CPS), which eschews the standard practice of making data gathering an unobtrusive, hidden audio-recording exercise in favour of dynamic interactive note-taking, in which participants' notes are read back to them, to be clarified, edited and augmented as part of interview sessions. The resulting narrative is also reviewed and finalised to produce the CPS. The paper argues that this obviates problems around, in particular, member checking, as participants are not burdened days later with the onerous task of examining and amending lengthy verbatim transcripts, often replete with various unflattering disfluencies. Also, the constant refining and clarification entailed in producing the CPS helps enable researchers to better explore, understand and analyse participant perspectives and meanings. To put the method into a research perspective, a case study of its use is outlinedthe creation of a 'living electronic archive' relating the use and impact of mobile technology on the lives of people with learning disabilities.Keywords: qualitative research, methods; recording interviews, inclusive research.'inclusive' refers to research in which participants are involved as co-designers, interviewers, data analysts and beneficiaries (Walmsley and Johnson, 2003;Williams, 1999). The concept of 'inclusive research' can 'be found predominantly in the field of learning disability research' (Nind, 2014: p3). Walmsley and Johnson, (2003) outline the characteristics that define inclusive research. These include making sure the 'research question, process and reports [are] accessible' (p64). Perhaps surprisingly, little consideration appears to have been given to the act of recording data accrued from participants. The issue is not simply 'how best to record data for the research', but 'how best to record data for the research in an inclusive manner'.There is, unsurprisingly, a growing body of work on data gathering (rather than recording). Much of it (e.g. Brewster, 2004;Lloyd, Gatherer and Kalsy, 2006) concerns interviewing people with little or no speech. Even those who are able to communicate well may require special treatment (Sigstad and Garrels, 2018). Despite this attention to participant input, issues around inclusivity and understanding of data recording and reviewing have not been considered. This paper redresses this imbalance, making the case for an alternative and arguably more inclusive approach: the 'Collaborative Personal Statement' (CPS). It begins with an account of the case for audio-recording, highlights the minimal discussion there has been on using this method with vulnerable participants and explores why, for some participants, ...