Changes in the Lives of People with Profound Intellectual and Multiple Disabilities

Nind, Melanie; Strnadová, Iva

doi:10.4324/9780429260711-1

Cited by 14 publications

(26 citation statements)

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“…Most interventions (n=6) described the participants as playing an active role in the musical experience, in which they contributed to their musical environment through singing, instrumental playing or controlling the musical sounds. This active role supports the current literature, and wider shifting perceptions of people with profound and multiple learning disabilities, from being passive individuals to active contributors within their interactions and relationships ( Nind & Strnadová, 2020 ).…”

Section: Discussionsupporting

confidence: 75%

“…Furthermore, within this timeframe there were likely to be fewer inconsistencies in the terminology used to describe this specific population ( Bellamy et al, 2010 ). This terminology, along with the expected life experiences and acknowledgement of people with profound and multiple learning disabilities, has developed significantly in the global north over the past thirty years ( Nind and Strnadová, 2020 ). Inconsistencies in ambiguous terminology, such as ‘high support needs’, ‘people with additional or complex needs’, ‘the most severely disabled’, has led to a lack of cohesive representation of this population in education, research and policy making ( Carnaby, 2004 ; PMLD Network, 2002 ).…”

Section: Methodsmentioning

confidence: 99%

“…A frequent activity within both their home ( Axelsson and Wilder, 2014 ) and school lives ( Maes et al, 2010 ), music is reported to affect the mood, communication, and playfulness of people with profound and multiple learning disabilities ( Rushton and Kossyvaki, 2020 , 2022 ). Whilst there is not a universally agreed definition of the characteristics of people with profound and multiple learning disabilities ( Nind and Strnadová, 2020 ), this heterogenous population have a profound intellectual disability often combined with physical disabilities, sensory impairments and complex medical needs ( Doukas et al, 2017 ). Other terms adopted to identify this population within literature include; people with profound intellectual and multiple disabilities (PMLD), profound and multiple intellectual disabilities (PMID), or individuals with complex and/or profound needs.…”

Section: Introductionmentioning

confidence: 99%

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Music-based interventions for people with profound and multiple learning disabilities: A systematic review of the literature

Rushton

Kossyvaki

Terlektsi

2022

J Intellect Disabil

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Music is motivational, accessible and engaging for individuals with learning disabilities. Several systematic reviews have addressed the effects of music activity on people with learning disabilities; however, none has specifically reviewed the use of musical activity with people with profound and multiple learning disabilities. This review aimed to: 1. identify peer-reviewed studies and describe the characteristics of evidence-based musical activity used with people with profound and multiple learning disabilities and 2. evaluate and analyse the effectiveness of these music-based interventions and identify gaps within current research. A systematic search was conducted in April 2021 identifying seven peer-reviewed studies which included music-based interventions with at least one person with profound and multiple learning disabilities. Findings reveal the interventions varied in their frequency, duration and content. The outcome of most (n=6) interventions documented the development of the participants’ social skillset. Interventions were predominantly (n=6) implemented by facilitators with musical expertise. The diverse and novel nature of the reviewed studies highlights a need to expand and enhance research with this population.

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Section: Discussionsupporting

confidence: 75%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Music-based interventions for people with profound and multiple learning disabilities: A systematic review of the literature

Rushton

Kossyvaki

Terlektsi

2022

J Intellect Disabil

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“…People with profound intellectual and multiple disabilities (PIMD) have traditionally been excluded from research, being regarded as too challenging to include. 1 There is thus a scarce knowledge base that includes people with PIMD. 2 Several methodological challenges have affected progress in the field, 3 including issues related to informed consent.…”

mentioning

confidence: 99%

“…People with profound intellectual and multiple disabilities (PIMD) have traditionally been excluded from research, being regarded as too challenging to include 1 . There is thus a scarce knowledge base that includes people with PIMD 2 .…”

mentioning

confidence: 99%

Self‐determination of people with profound intellectual and multiple disabilities

Skarsaune

2022

Develop Med Child Neuro

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Self-determination is a human right that people with profound intellectual and multiple disabilities (PIMD) risk not being granted. Exploration of such topics and research in general has traditionally not included people with PIMD as sources of knowledge; rather, the perspective of others has been sought. Ethnographic methods highlighting descriptions of lived experience have been argued as a way of including such individuals, producing knowledge building on the person's perspective. Exploring the human right to be self-determined through ethnographic approaches can bring novel ways of understanding the concept, both about how to listen and learn from such experiences, and about implications for understanding self-determination. All people have the potential for self-determination, by being understood through embodied communication in caring relationships. By fostering relations with people with PIMD in sensitive, ethical ways, and addressing their profound dependency, their self-determination can be realized.How to cite this article: Skarsaune SN. Selfdetermination of people with profound intellectual and multiple disabilities.

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What’s Good About Inclusion? An Ethical Analysis of the Ideal of Social Inclusion for People with Profound Intellectual and Multiple Disabilities

van der Weele,

Bredewold

2023

Health Care Anal

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Abstract‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, that moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise.

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Changes in the Lives of People with Profound Intellectual and Multiple Disabilities

Cited by 14 publications

References 0 publications

Music-based interventions for people with profound and multiple learning disabilities: A systematic review of the literature

Music-based interventions for people with profound and multiple learning disabilities: A systematic review of the literature

Self‐determination of people with profound intellectual and multiple disabilities

What’s Good About Inclusion? An Ethical Analysis of the Ideal of Social Inclusion for People with Profound Intellectual and Multiple Disabilities

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