‘My son has lost his dignity’: dignity of persons with profound intellectual and multiple disabilities

Olsman, Erik; Nieuwenhuijse, Appolonia M.; Willems, Dick L.

doi:10.1080/09687599.2022.2045190

Cited by 2 publications

(1 citation statement)

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“…Moreover, self‐determination for persons with PIMD should not be about them making independent choices, as this is not achievable. Rather, it should start from the premise that persons with PIMD have intrinsic dignity (Olsman et al, 2022) and the capability to influence their environment. This asks for an environment that is sensitive enough to “read” their signals and interpret their desires and needs (Kruithof et al, 2020; Nieuwenhuijse, 2022).…”

Section: Moving Forward To a New Qol Paradigmmentioning

confidence: 99%

Understanding quality of life of persons with profound intellectual and multiple disabilities

Nieuwenhuijse,

Willems,

Kruithof

2023

Policy Practice Intel Disabi

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In this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well‐being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best.

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Section: Moving Forward To a New Qol Paradigmmentioning

confidence: 99%