Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities

Maes, Beatrijs; Nijs, Sara; Vandesande, Sien; keer, Ines Van; Arthur‐Kelly, Michael; Dind, Juliane; Goldbart, Juliet; Petitpierre, Geneviève; Putten, Annette van der

doi:10.1111/jar.12803

Cited by 70 publications

(88 citation statements)

References 87 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Several limitations of the present study should be acknowledged. First, the small samples due to the low prevalence rates, the vulnerable health conditions [ 2 , 51 ], and accessibility to EGAT of our target group affect generalizability. The results should be interpreted with caution.…”

Section: Discussionmentioning

confidence: 99%

“…The momentary observations based on videos might not be fully representative of the dyadic communicative interactions across various daily activities. Researchers could consider a combination of different methodologies to strengthen the research findings [ 51 ], for instance, integrating interviews with proxies to triangulate quantitative data and provide a comprehensive picture of the dyadic communicative interactions in daily life.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Communicative Interaction with and without Eye-Gaze Technology between Children and Youths with Complex Needs and Their Communication Partners

Hsieh

Borgestig

Gopalarao³

et al. 2021

IJERPH

View full text Add to dashboard Cite

Use of eye-gaze assistive technology (EGAT) provides children/youths with severe motor and speech impairments communication opportunities by using eyes to control a communication interface on a computer. However, knowledge about how using EGAT contributes to communication and influences dyadic interaction remains limited. Aim: By video-coding dyadic interaction sequences, this study investigates the impacts of employing EGAT, compared to the Non-EGAT condition on the dyadic communicative interaction. Method: Participants were six dyads with children/youths aged 4–19 years having severe physical disabilities and complex communication needs. A total of 12 film clips of dyadic communication activities with and without EGAT in natural contexts were included. Based on a systematic coding scheme, dyadic communication behaviors were coded to determine the interactional structure and communicative functions. Data were analyzed using a three-tiered method combining group and individual analysis. Results: When using EGAT, children/youths increased initiations in communicative interactions and tended to provide more information, while communication partners made fewer communicative turns, initiations, and requests compared to the Non-EGAT condition. Communication activities, eye-control skills, and communication abilities could influence dyadic interaction. Conclusion: Use of EGAT shows potential to support communicative interaction by increasing children’s initiations and intelligibility, and facilitating symmetrical communication between dyads.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Communicative Interaction with and without Eye-Gaze Technology between Children and Youths with Complex Needs and Their Communication Partners

Hsieh

Borgestig

Gopalarao³

et al. 2021

IJERPH

View full text Add to dashboard Cite

show abstract

“…The CPADULT, as is the CPCHILD, focusses on observation of practical everyday activities and behaviour. Although, interpretation of behaviour can also be biased by the observers (Maes, 2020 ) because of their own knowledge of the individual and previous experiences with the individual in similar situations (Munde et al, 2011 ). When validating the Dutch version of the CPCHILD we assessed the inter‐observer reliability in asking two members of the family—mostly mother and father—to complete the questionnaire.…”

Section: Discussionmentioning

confidence: 99%

Development and sensibility assessment of a health‐related quality of life instrument for adults with severe disabilities who are non‐ambulatory

Zalmstra

Elema

Gils³

et al. 2021

Research Intellect Disabil

View full text Add to dashboard Cite

Health-related quality of life (HRQoL) is defined as an individual's perception of how an illness and its treatment affect the physical, mental and social aspects of his or her life. HRQoL is seen as a multidimensional construct, which can be measured indirectly using multiple items in several domains (Vet et al., 2011). These domains encompass aspects of physical, psychological and social functioning. The domains of HRQoL are a subset of the eight-core quality of life (QoL) domains that have been identified and which cover all aspects of life: emotional well-being, interpersonal relationships, material well-being, personal development, physical well-being, self-determination, social inclusions and rights (Schalock et al., 2005) (Gómez et al., 2015. QoL is, therefore, broader than HRQoL because it includes evaluation of non-health-related features of life, whereas HRQoL is connected to an individual's health or disease status. As QoL is important to everyone (with or without disabilities), HRQoL focuses on the impact health status has on quality of life. HRQoL is especially important for people with chronic illness or disabilities since the consequences of their conditions play a prominent role in almost every aspect of their lives and are lifelong. Most interventions for these people have a common goal, not to cure but to preserve or enhance their health-related quality of

show abstract

“…Another identified challenge involves the lack of validated research instruments (e.g. evaluated for their psychometric properties) to assess this group of participants (Maes et al 2021, Engelhardt et al 2020. This is also reflected in this review.…”

Section: Limitations Future Directions and Implications For Practicementioning

confidence: 99%

“…Since it is often very difficult to assess the exact degree of intellectual disability in children with severe to profound ID (i.e. IQ < 20), who also have several other disabilities (Nakken and Vlaskamp 2007, Maes et al 2021, Rensfeldt Flink et al 2020, children reported to have a severe intellectual disability are also often included in studies of PIMD (Arthur-Kelly et al 2018, Bindels-de Heus et al 2013. By definition, adaptive difficulties are characteristic features in ID in general (ICD-11, World Health Organization, 2018).…”

Section: Introductionmentioning

confidence: 99%

Musical interaction with children and young people with severe or profound intellectual and multiple disabilities: a scoping review

Johnels

Vehmas

Wilder

2021

International Journal of Developmental Disabilities

View full text Add to dashboard Cite

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.

show abstract

Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities

Cited by 70 publications

References 87 publications

Communicative Interaction with and without Eye-Gaze Technology between Children and Youths with Complex Needs and Their Communication Partners

Communicative Interaction with and without Eye-Gaze Technology between Children and Youths with Complex Needs and Their Communication Partners

Development and sensibility assessment of a health‐related quality of life instrument for adults with severe disabilities who are non‐ambulatory

Musical interaction with children and young people with severe or profound intellectual and multiple disabilities: a scoping review

Contact Info

Product

Resources

About