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. 2021 Jun;29(2):144-153.
doi: 10.1007/s10728-021-00428-y. Epub 2021 Mar 17.

Witnessing Quality of Life of Persons with Profound Intellectual and Multiple Disabilities. A practical-Philosophical Approach

Erik Olsman  1 , Appolonia M Nieuwenhuijse  2   3 , Dick L Willems  2
Affiliations

Witnessing Quality of Life of Persons with Profound Intellectual and Multiple Disabilities. A practical-Philosophical Approach

Erik Olsman et al. Health Care Anal. 2021 Jun.

Abstract

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these 'others' are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers' knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers' experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made.

Keywords: Ethics; Intellectual and developmental disability; Profound intellectual and multiple disabilities; Quality of life; Ricoeur.

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References

    1. Carter, B., Arnott, J., Simons, J., & Bray, L. (2017). Developing a sense of knowing and acquiring the skills to manage pain in children with profound cognitive impairments: Mothers’ perspectives. Pain Research and Management, 2017, 2514920. https://doi.org/10.1155/2017/2514920 .
    1. Chambers, T., & Montgomery, K. (2002). Plot: Framing contingency and choice in bioethics. In R. Charon & M. Montello (Eds.), Stories matter: The role of narrative in medical ethics (pp. 77–84). New York: Routledge.
    1. Connelly, J. E. (2002). In the absence of narrative. In R. Charon & M. Montello (Eds.), Stories matter. The role of narrative in medical ethics (pp. 138–146). New York: Routledge.
    1. Costa, S. J. (2015). Reflective, causal, and composite indicators of quality of life: A conceptual or an empirical distinction? Quality of Life Research, 24, 2057–2065. https://doi.org/10.1007/s11136-015-0954-2 . - PubMed
    1. Derrida, J. (1972). La mythologie blanche La métaphore dans le texte philosophique. In J. Derrida (Ed.), Marges de la philosophie (pp. 247–324). Paris: Seuil.

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