| 1. |
- Johnels, Linn, 1978-, et al.
(författare)
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Children with PIMD : Intervention study targeting school staffs’ responsive strategies using interactive music activities and multisensory storytelling
- 2019
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Konferensbidrag (refereegranskat)abstract
- Since children with profound intellectual (and multiple) disabilities (PI(M)D) are highly dependent on others for social interaction and learning, it is pivotal to gain insight into communicative and pedagogical strategies that enhance alertness, engagement and contingency awareness. In this poster, I will present the outline and preliminary results of my PhD-project. Method: Three sub-studies are outlined. In all studies, student alertness, engagement and social attention are key outcome measures. In a first systematic literature review of the existent literature, I will evaluate the effects of teaching personnel’s responsive strategies and contingency raising activities. Study 2 and 3 are a case-study and an experimental single subject design, where interactive music and multi-sensory storytelling are systematically entered as elements in pedagogical practice for students with PI(M)D. To evaluate effects, behavior will be filmed and coded using established observation schedules, complemented with teacher interviews in order to better understand the perceived meaning of this type of intervention. Results: Preliminary studies from the study 1 will be presented, alongside a description of the project in its totality. Implications: This project will contribute to the knowledge of how to support learning and development in schoolchildren with PI(M)D.
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| 2. |
- Johnels, Linn, 1978-, et al.
(författare)
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Interactive Music with Children and Youths with Severe or Profound Intellectual and Multiple Disabilities : Preliminary findings from a Systematic Literature Review
- 2020
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Konferensbidrag (refereegranskat)abstract
- Introduction: It has been proposed that interactive music and music therapy not only develops musical abilities but also more general developmental abilities such as social and communicative abilities in children and youths with intellectual disabilities. However, previous research on music with children with disabilities is rather scarce, particularly when it comes to children with severe or profound intellectual and multiple disabilities. Method: The aim of the current study is to identify and systematically review research on interactive music with children and youths with severe or profound intellectual and multiple disabilities (S/PIMD) in peer-reviewed articles written in English during the years 2000-2020. Research questions focuses on participant characteristics; research purposes, methodologies, findings and effectiveness of interventions. The searches in the databases will be performed through various combinations of search terms. Given the heterogeneity of the included studies’ methods and data, the included studies will be summarized using text and tables to compare and contrast findings across studies. The quality of the evidence (risk of bias) will be assessed. Discussion/Conclusions: Preliminary findings will be presented which may reveal implications for practice and research concerning effectiveness of interactive music interventions and research designs together with children with S/PIMD. It will potentially contribute to the evidence based knowledge of how to support development and education for the target group.
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| 3. |
- Johnels, Linn, et al.
(författare)
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Musical interaction with children and young people with severe or profound intellectual and multiple disabilities : a scoping review
- 2023
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Ingår i: International Journal of Developmental Disabilities. - : Informa UK Limited. - 2047-3869 .- 2047-3877. ; 69:4, s. 487-504
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Forskningsöversikt (refereegranskat)abstract
- This scoping review addresses peer-reviewed research on musical interaction with children and young people with severe/profound intellectual and multiple disabilities (S/PIMD). Twenty-five articles published between the years 2000 and 2020 met the inclusion criteria. A narrative synthesis was used to summarise and evaluate different features, including participant characteristics, study design and methods, type of musical interaction, the abilities and behaviours in focus, reported benefits, promising components of musical interaction, and quality appraisal of the studies. The results revealed a variation in participant characteristics and study designs, where small-sample descriptive case studies were most common. In terms of the type of musical interaction, active music therapy was the most commonly used approach, followed by technology-mediated and multisensory musical activities. In terms of abilities and behaviours, a large majority of the studies focused on social interaction and communication, followed by engagement, attention and affect. Six categories were identified as promising components of musical interaction: the responsivity of the interaction partner, singing songs, structure and predictability in the activities, long-term interventions, technology-mediated and multisensory musical activities, and a therapeutic alliance between interaction partners. Based on this review, we discuss future research and practical implications for musical interaction and music therapy for children and young people with S/PIMD.
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| 4. |
- Mietola, Reetta, et al.
(författare)
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'He Is, After All, a Young Man' : Claiming Ordinary Lives for Young Adults with Profound Intellectual Disabilities
- 2019
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 21:1, s. 120-128
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Tidskriftsartikel (refereegranskat)abstract
- This paper discusses youth and the significance of age in the lives of persons with profound intellectual and multiple disabilities. The analysis is based on an ethnographic research project that explores what makes a good life for this group of people. The findings indicate that whilst the meaning and significance of youth and age were discussed often by care workers and family members, age had very little significance in the lives of our research participants. Youth as a phase of life gets lost in the transition from children's services to adult services: age in the lives of persons with profound intellectual disabilities means merely a move from one service system to another. For the care workers, age provides a way to evaluate and criticize the service system and whether it caters for the individual needs of persons with profound intellectual disabilities.
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| 5. |
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| 6. |
- Vehmas, Simo
(författare)
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Floating Signifiers : Managing Disability Language in Sweden
- 2024
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Ingår i: Scandinavian Journal of Disability Research. - 1501-7419 .- 1745-3011. ; 26:1, s. 16-27
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Tidskriftsartikel (refereegranskat)abstract
- This paper analyzes the management of intellectual disability language. I will focus specifically on the term flerfunktionsnedsättning which is the recommended Swedish equivalent for Profound intellectual and multiple disabilities (PIMD). This term reflects how, in Sweden, discourses and practices with an aim to conform language to linguistic, ethical, and political ideals are enacted. The result of such process in relation to disability has been the creation of different co-existing vocabularies that often create confusion. This is especially the case with flerfunktionsnedsättning which is hardly used or even recognized in the field among professionals. I will argue that this terminological confusion reflects the normative confusion in disability studies and disability policy.
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| 7. |
- Vehmas, Simo, et al.
(författare)
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Narrowed lives : meaning, moral value, and profound intellectual disability
- 2021
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Bok (refereegranskat)abstract
- What is day-to-day life like for people with profound intellectual and multiple disabilities who live in group homes? How do they express their desires and wishes? How do care workers think about them and treat them? Do they have basic rights to activities most of us take for granted: activities like sociability, sexuality, and moral affirmation?Narrowed Lives is an illuminating portrait of what life is like in Finnish group homes where adults who have profound intellectual and multiple disabilities live their lives. Based upon ethnographic data, it documents how care workers strive to guarantee individuality and dignity against a backdrop of scarce resources and misguided policies. This book argues that the lives of people with profound disabilities need not be determined by their impairments. It calls for a re-evaluation of disability policy so that its underlying conviction of people with profound intellectual and multiple disabilities as equally valuable fellow humans would materialise in practice.This novel and accessible book combines ethnography and philosophy, and will be of interest to researchers and students in disability studies, special education and philosophy, as well as parents, professionals and policy makers.
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| 8. |
- Vehmas, Simo
(författare)
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Persons with profound intellectual disability and their right to sex
- 2019
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Ingår i: Disability & Society. - : Informa UK Limited. - 0968-7599 .- 1360-0508. ; 34:4, s. 519-539
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Tidskriftsartikel (refereegranskat)abstract
- This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.
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| 9. |
- Vehmas, Simo, et al.
(författare)
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Vaikeasti kehitysvammaisten arki ja ihmisyys
- 2022
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Bok (refereegranskat)abstract
- Vaikeasti kehitysvammaisten arki ja ihmisyys tekee näkyväksi vaikeasti kehitysvammaisten arkea ja siihen liittyviä eettisiä kysymyksiä. Millaista on heidän todellisuutensa? Toteutuvatko heidän elämässään osallisuus ja itsemäärääminen, ja miten niitä pitäisi edistää käytännössä? Tutkimus piirtää kuvan sosiaalisesti eristäytyneestä ja pysähtyneestä elämästä ja antaa synkän kuvan kehitysvammahuollon resursseista sekä niiden käytöstä. Voi sanoa, että Suomessa on hyvää tarkoittava vammaispolitiikka, joka ei käytännössä toteudu. Toisaalta kehitysvammahuollossa on myös ennakkoluulotonta toimintakulttuuria, joka voi vähitellen muuttaa käytäntöjä sekä käsityksiä siitä, mihin vaikeimmin kehitysvammaiset kykenevät, mikä on heille sopivaa ja millaista elämää he ylipäätään voivat elää. Teos antaa välineitä keskusteluun, purkaa kehitysvammaisista vallalla olevia ennakkoluuloja ja kuvaa, millaisia arvoja sekä periaatteita kehitysvammahuollon toimintakulttuuri ja käytännöt ilmentävät.
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