Navigating uncertainty: taking methodological cues from relatives and care professionals for researching the perspectives of people with profound intellectual and multiple disabilities

Abstract

Background: Researching the perspectives of people with profound intellectual and multiple disabilities (PIMD) presents complexity and uncertainty. Traditional research often prioritises rational, objectivist methods, which may overlook this complexity. Aims: This study aimed to develop methodological cues for researchers studying the perspectives of people with PIMD by exploring how support workers and relatives deal with the uncertainty of uncovering these perspectives, drawing on Zinn’s typology of strategies for dealing with uncertainty: “rational,” “non-rational,” and “in-between”. Method: We conducted interviews with support workers and relatives and observed interactions through shadowing. Results: All of Zinn’s strategies were observed, leading to six cues: (1) practicing an ethic of engagement; (2) valuing non-rational knowledge; (3) collaborating closely with caregivers; (4) acknowledging intertwined perspectives; (5) adopting phenomenological approaches; and (6) accepting uncertainty as inevitable. Conclusion: These cues promote an “anti-sceptical ethic of engagement” that encourages researchers to actively attune to the perspectives of people with PIMD.