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

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

doi:10.1007/s10728-021-00428-y

Cited by 14 publications

(8 citation statements)

References 16 publications

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“…Reflection methods are already used, mainly in nursing practice, to discover the counter‐productive forces of tacit knowledge and make experts critically think about their care routines (see e.g., Perry, 2000; Phelvin, 2013; Schutz, 2007). Olsman et al (2021) advocate a process of intersubjective mirroring, in which both trust and receptivity as well as suspicion should have a place. Since persons with PIMD will never be able to clearly communicate their situation and needs, it is important to include different perspectives and different forms of knowledge when exploring their interests.…”

Section: Discussionmentioning

confidence: 99%

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Tacit knowledge in dyads of persons with profound intellectual and multiple disabilities and their caregivers: An interpretative literature study

Hoogsteyns

Zaal-Schuller

Huisman

et al. 2023

Research Intellect Disabil

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Background: Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer.Aim: To gain understanding of the nature and development of tacit knowledge between persons with PIMD and their caregivers. Method:We conducted an interpretative synthesis of literature on tacit knowledge in caregiving dyads with persons with PIMD, persons with dementia or infants.Twelve studies were included.Results: Tacit knowledge is about caregivers and care-recipients becoming sensitive and responsive to each other's cues and together crafting care routines. Learning takes place in a constant process of action and response that transforms those involved. Conclusion:Building tacit knowledge together is necessary for persons with PIMD to learn to recognise and express their needs. Suggestions are made for ways to facilitate its development and transfer.

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Section: Discussionmentioning

confidence: 99%

“…Reflection methods are already used, mainly in nursing practice, to discover the counter-productive forces of tacit knowledge and make experts critically think about their care routines (see e.g., Perry, 2000;Phelvin, 2013;Schutz, 2007). Olsman et al (2021)…”

Section: Tacit Knowledge In the Care For Persons With Pimd And The Ex...mentioning

confidence: 99%

Tacit knowledge in dyads of persons with profound intellectual and multiple disabilities and their caregivers: An interpretative literature study

Hoogsteyns

Zaal-Schuller

Huisman

et al. 2023

Research Intellect Disabil

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“…Still, given the always‐remaining necessity to interpret signs and signals made by persons with PIMD, we would not consider the use of proxies as second best, but rather as crucial in assessing the QoL of persons with PIMD. To make sure the interests of persons with PIMD, who cannot speak for themselves, are effectively explored and defended, we, therefore, argue that it is more fruitful to search for requirements for what makes a proxy reliable, as well as for inter‐subjectivity between proxies (Olsman et al, 2021), than to debate whether proxy‐assessments, in general, are valid or not.…”

Section: Proxiesmentioning

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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“…Doing research inclusively of/with people with profound disabilities involves us as researchers in expanding our capacity to see and listen. We can learn from the work of Olsman et al (2021) on families as witnesses, practical tips on listening from Goodwin (2013) and creative methods for hearing voice from Evans (2021). We can learn from co-design techniques (Neidlinger et al 2021) and from seeing the person with profound intellectual disabilities as the teacher (Ward et al 2016).…”

Section: Small Storymentioning

confidence: 99%

Inclusive Research: Is the Road More or Less Well Travelled?

2023

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She is known for leading inclusive research initiatives where people with intellectual disabilities are involved as co-researchers. Patricia's work has also seen the development and mentoring of two major Inclusive Research Networks (IRN) one across Ireland and later in Sydney where researchers both with and without disabilities have co-designed areas of research interest with international dissemination of their findings. Also, as a strong advocate for inclusive education within university settings, Patricia introduced the "uni 2 beyond"program at the University of Sydney where students with intellectual disabilities can audit courses. Patricia has co-edited three books that promote the need for value-based inclusion both within education and community based service design. She is a Fellow of the Australasian Society of Intellectual Disability and is active in the non-government disability organisation sector as a Non-Executive Director of both Achieve Australia and The Achieve Foundation.

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

Cited by 14 publications

References 16 publications

Tacit knowledge in dyads of persons with profound intellectual and multiple disabilities and their caregivers: An interpretative literature study

Tacit knowledge in dyads of persons with profound intellectual and multiple disabilities and their caregivers: An interpretative literature study

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

Inclusive Research: Is the Road More or Less Well Travelled?

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