From Individualism to Co-construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

Abstract

Children with profound and multiple learning disabilities (PMLD) are said to experience severe congenital impairments to consciousness and cognition stemming from neurological damage. Such children are understood as operating at the pre-verbal stages of development, and research in the field typically draws conceptual resources from psychology to devise educational interventions and assessment tools. Criticism has been levelled at studies that treat children with PMLD as objects of research rather than subjects to be consulted. Proponents of the latter view have attempted to redress the situation by exploring how personal experiences can be gleaned through adapted qualitative methods. Debate about methodology in the PMLD field tends to coalesce around these individualist polemics: either children with PMLD are positioned as incompetent and lacking voice; or researchers are positioned as lacking the appropriate tools to gain access to such voice. This paper offers an alternative position to the individualism of post-positivist/constructivist approaches, identifying the need for a critical and participatory approach that sees knowledge about children with PMLD as situated and co-constructed through regular and longitudinal interaction between the researcher, children with PMLD, and significant others. Context to this argument is provided by exploring the application of this approach to an inclusive education research project for a child with PMLD.

The impact of books on social inclusion and development and well‐being among children and young people with severe and profound learning disabilities: Recognising the unrecognised cohort

“…Rigorous attention was given to designing methods that could elicit communication from CYP who could not speak. An individualistic imaging of the CYP was rejected in favour of a participatory approach that perceives all participants as expressive rather than without voice through recognising that this voice can be expressed in vocal and embodied ways through contextualised interactions (Simmons & Watson, ).…”

Communicative Work: Establishing Communication by Severely Disabled Children in Small Group Homes

“…Relying on the children's bodily actions as their communicative tool, the chosen research method was participant observation (Merleau-Ponty, 2002;Simmons & Watson, 2015). Gobo and Marciniak (2016) claim that behavioural patterns are consistent over time, promoting observation as a reliable research method.…”

“…A growing body of research has promoted "voice" and agency for the silenced group, often within educational disciplines (e.g. Evensen, 2018;Nind et al, 2010;Simmons, 2019;Simmons & Watson, 2015), but also within residential care (e.g. Franklin & Goff, 2019;Goode, 1994;Greathead et al, 2016;Woodin, 2017).…”

Identifying perception behaviours in people with profound intellectual and multiple disabilities

“…However, due to difference of definition, these studies focus on participants with higher cognitive abilities than the people included in this study. Simmons and Watson (), for example, used photo‐elicitation methods to gain access to a child with profound and multiple learning disabilities (PMLD). Morris () describes a method of participant observation (“being with”) to analyse the experiences of a young person with autism and mild intellectual disabilities.…”

“…Existing research focussing on people with PIMD is often based on video recordings and/or knowledge of professionals gained from experience (De Geeter, Poppes, & Vlaskamp, ; Roemer & Van Dam, ; Van den Berg et al., ) or on a combination of methods, such as the use of information from significant others, participatory observation, vignettes or field notes about social interactions (Simmons & Watson, ). Studies using structured observation lists, such as the Alertness Observation List (AOL; Munde, Vlaskamp, Ruijssenaars, & Nakken, ) or the Affective Communication Assessment (ACA; Coupe O'Kane & Goldbart, ), depend on the interpretation during data gathering.…”