It is estimated that visual and severe or profound intellectual disabilities affect 10,000 to 15,000 adults in the Netherlands, which is approximately 0.05-0.08% of the Dutch population. These adults have an intelligence quotient of less than 35 points, and their visual acuity is less than 6/18. Comorbidity is very common in these adults, i.e., they often experience other physical impairments, sensory impairments, or medical problems.People with severe or profound intellectual disabilities and visual impairment (MDVI) encounter numerous physical health problems simultaneously. In addition, they have lower physical activity and physical fitness levels compared to the general population. As a consequence, their ability to perform activities of daily living is decreased. Last but not least, persons with MDVI appear to be at risk of decreased participation. Royal Dutch Visio and the Hanze University closely collaborate with the Research Centre on Profound Intellectual and Multiple Disability of the Rijksuniversiteit Groningen to perform research in persons with MDVI. In this symposium, their research and that of international research groups will be presented concerning the following topics: participation, physical health problems, optometric issues, motor activation, and measuring muscle strength of persons
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Background: While the participation of adults with visual and severe or profound intellectual disabilities (VSPID) in society and community life is important, evidence-based interventions to improve their participation are lacking. Weconducted a process evaluation of the implementation of ‘Care for Participation+’ (CFP+), a new intervention targeting the attitudes of direct support professionals (DSPs) toward the participation of adults with VSPID, within a residential facility in the Netherlands.Methods: CFP+ was inspired by the Boston Psychiatric Rehabilitation Approach and adapted by adopting a new definition and operationalization of the concept of participation for adults with VSPID. Following systematic training, 16 DSPs of adults with VSPID were able to apply key elements of CFP+ to explore diverse roles and activities for this population, facilitating their self-management, teaching them necessary skills for participation, and organizing support. Our process evaluation entailed an investigation of the delivered dose, reach, fidelity, and adaptation of CFP+ during and after the CFP+ intervention. We also evaluated the mechanisms of impact and context using questionnaires, assignments, documentation, interviews, and a logbook.Results: The intended dose, reach, and fidelity relating to the implementation of CFP+ were not achieved. Despite this fact, an assessment of the mechanisms of impact indicated that assignments of CFP+ were well (75%) or reasonably well (17%) understood by DSPs. CFP+ was applied by DSPs to stimulate self-management (83% of DSPs), new activities (100%), enhanced involvement in existing activities (67%) and to explore new roles (50%) for adults with VSPID. A negative contextual factor mentioned by the trainer and manager was the DSPs’ lack of commitment to the training program. Another negative contextual factor mentioned by DSPs was the lack of time for implementing CFP+.Conclusions: CFP+ provides new opportunities to improve the participation of adults with VSPID. Despite the nonoptimal conditions for implementing CFP+ and the DSPs’ general reluctance to apply the new intervention, some have actively used CFP+ within the residential facility. Future studies should focus on the outcomes of CFP+ regarding attitudinal changes among DSPs relating to the participation of adults with VSPID and their quality of life.
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If being physically fit is of the outmost importance, then what can be said about the fitness of persons with severe or profound intellectual, visual and motor disabilities? Exactly how could their level of physical fitness be measured? Formulated differently, if a person sees little to nothing and in addition has little comprehension of its immediate environment, then how should one go about testing? How motivated would this person be to be subjected to tests and to perform the tasks as well as possible?' Finding an answer to these questions formed the main incentive for this research. The important concrete results of this research are feasible, reliable, and valid tests for assessing physical fitness of persons with severe or profound intellectual and multiple disabilities, which can be directly implemented into the daily practice.
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Background: The extent of participation of adults with visual and severe or profound intellectual disabilities (VSPID) is unclear.Aims: To explore participation of adults with VSPID and the association between occurrence and importance of aspects of participation.Methods: Individual support plans (ISPs) of 40 adults with VSPID were analyzed: selected text fragments were categorized according to 125 previously operationalized statements that had different levels of importance and were divided into seven participation clusters.Results: The ISPs contained 2791 text fragments that related to a statement. All clusters were covered: the clusters ‘Experience and discover’ (91.7%), ‘Involvement’ (90%), and ‘Social relations’ (87.5%) were well covered. ‘Inclusion’ (53.6%) and ‘Leisure and recreation’ (57.1%) were mentioned less often. Among the 36 high-importance statements, two related to ‘Inclusion’, ‘Involvement’ and ‘Social Relations’ each, three to ‘Communication and being understood’, and five to ‘Self-management and autonomy’ had at least 30 text fragments.Conclusions: The participation domains ‘Experience and discover’, ‘Involvement’, and ‘Social relations’ are well-documented, suggesting that adults with VSPID participate in those areas. However, domains such as ‘inclusion in society’ and ‘leisure in society’ were not documented. This overview of participation offers residential facilities the opportunity to determine in which areas participation can be improved.
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Background: We investigated the effects of the “Care for Participation+” (CFP+) intervention on direct support professionals’ (DSPs’) attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID).Methods: We implemented a pilot non-randomized controlled trial with two control groups to compare DSPs’ attitudes towards CFP+ using the Attitudes towards Participation Questionnaire (APQ) and DSPs’ written profiles of adults with VSPID.Results: CPP+ and the Participation Mind Map control group showed a positive trend for the “leisure/recreation,” “social relations,” and “ability to act” APQ domains compared to the usual care control group. The CFP+ group described significantly fewer disabilities at 6 months, reflecting a more positive attitude than controls.Conclusion: CFP+ had positive effects on DSPs’ attitudes towards the participation of adults with VSPID. The small sample size, ceiling effects, measurement instruments used, and implementation difficulties may have hampered understanding the full potential of CFP+.
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The aim of this study was to gain insight into the visual functioning of children with profound intellectuual and multiple disabilities (PIMD). A mixed methods study was performed, determining cross-sectional quantitative ophthalmological/orthoptic data, and qualitative observational data with a standardized research protocol (SRP) of 73 children with PIMD. Descriptive statistics and correlations were used for analyses of the data. Using ophthalmological data, 90.4% of the participants were found visually impaired. Based on the visual acuity (VA) testing, 49.6% of the participants had an impaired VA (
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Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
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BACKGROUND: The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID.AIMS: The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID.METHODS: Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation.RESULTS: A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters.CONCLUSIONS: The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.
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Background: Knowledge concerning the feasibility and effects of progressive resistance training (PRT) for persons with intellectual disabilities and visual impairment who are categorized in Gross Motor Function Classification System (GMFCS) Level 1 is limited. The aim of our study was to evaluate feasibility and effect of PRT on participants' Quadriceps strength and personal goals.Methods: Eight Participants followed a PRT program for 10 weeks. Feasibility wasdetermined by percentage of attendance and compliance. The effect of PRT was analyzed with a linear mixed model (p < 0.05) and by normalized bootstrap (95% CI).Results: Participants attended 87.8% of the sessions and trained according to thePRT program, indicating sufficient compliance. Quadriceps strength increased significantly by 69%, and participants' personal goals were achieved.Conclusion: PRT is a feasible and potentially effective method for increasingQuadriceps strength as well as achieving personal goals in persons with intellectual disabilities and visual impairment with GMFCS Level 1.
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Background: A feasible and reliable instrument to measure strength in persons with severe intellectual and visual disabilities (SIVD) is lacking. The aim of our study was to determine feasibility, learning period and reliability of three strength tests.Methods: Twenty-nine participants with SIVD performed the Minimum Sit-to-Stand Height test (MSST), the Leg Extension test (LE) and the 30 seconds Chair-Stand test (30sCS), once per week for 5 weeks. Feasibility was determined by the percentage of successful measurements; learning effect by using paired t test between two consecutive measurements; test–retest reliability by intraclass correlation coefficient and Limits of Agreement and, correlations by Pearson correlations.Results: A sufficient feasibility and learning period of the tests was shown. The methods had sufficient test–retest reliability and moderate-to-sufficient correlations. Conclusion: The MSST, the LE, and the 30sCS are feasible tests for measuring muscle strength in persons with SIVD, having sufficient test re-test reliability.
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