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Updated: May 21, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Navigating uncertainty: taking methodological cues from relatives and care professionals for researching the
Femmianne Bredewold1, Simon van der Weele1
1Department of Citizenship and Humanisation of the Public Sector, University of Humanistic Studies, Utrecht, The Netherlands.
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.
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