This study provides an illustration of a research design complementary to randomized controlled trial to evaluate program effects, namely, participatory peer research (PPR). The PPR described in current study was carried out in a small sample (N = 10) of young adults with mild intellectual disabilities (MID) and severe behavioral problems. During the PPR intervention, control and feedback to individuals is restored by training them to become participant-researchers, who collaborate in a small group of people with MID. Their research is aimed at the problems the young adults perceive and/or specific subjects of their interest. The study was designed as a multiple case study with an experimental and comparison group. Questionnaires and a semistructured interview were administered before and after the PPR project. Results of Reliable Change Index (RCI) analyses showed a decrease in self-serving cognitive distortions in the PPR group, but not in the comparison group. These results indicate that PPR helps to compensate for a lack of adequate feedback and control, and in turn may decrease distorted thinking and thereby possibly later challenging behavior.
Background: An adaptation of multisystemic therapy (MST) was piloted to find out whether it would yield better outcomes than standard MST in families where the adolescent not only shows antisocial or delinquent behaviour, but also has an intellectual disability. Method: To establish the comparative effectiveness of MST‐ID (n = 55) versus standard MST (n = 73), treatment outcomes were compared at the end of treatment and at 6‐month follow‐up. Pre‐treatment differences were controlled for using the propensity score method. Results: Multisystemic therapy‐ID resulted in reduced police contact and reduced rule breaking behaviour that lasted up to 6 months post‐treatment. Compared to standard MST, MST‐ID more frequently resulted in improvements in parenting skills, family relations, social support, involvement with pro‐social peers and sustained positive behavioural changes. At follow‐up, more adolescents who had received MST‐ID were still living at home. Conclusions: These results support further development of and research into the MST‐ID adaptation.
Background The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to the quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and physical capacities. However, until recently, the impact of the significantly prevalent visual impairments on the performance of activities of daily living has not yet been revealed within this group. Aim The purpose of this study was to investigate the impact of visual impairment on the performance of Activities of Daily Living for persons with a severe/profound intellectual disability. Method The Barthel Index (BI) and Comfortable Walking Speed (CWS) were employed in order to measure in 240 persons with severe/profound ID and having Gross Motor Functioning Classification System (GMFCS) levels I, II or III the ability of performing activities of daily living (ADL); this included 120 persons with visual impairment. Effects were analysed with linear regression analyses. Results The results of the study demonstrated that visual impairment has a minimal, but significant, effect on the ability of performing Activities of Daily Living (BI) for persons with a severe/profound intellectual disability. Forty four percent of the total BI score can be predicted by the GMFCS level and the level of ID; 45% with the additional presence of visual impairment. GMFCS levels II or III, a profound ID level, and visual impairment yielded lower BI scores compared to GMFCS Level I, severe ID, and no visual impairment. CWS scores did not significantly vary if visual impairment was present. Conclusions Visual impairment does slightly affect the ability to perform ADL in persons experiencing severe/profound ID.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
Broers en zussen van mensen met (Z)EVMB zijn vaak levenslang betrokken bij de zorg voor hun broer of zus. Gedurende het leven veranderen de rollen die zij vervullen. Wanneer de ouders meer op leeftijd raken en de zorgtaken voor hen zwaarder worden of niet meer mogelijk zijn, komen broers en zussen voor de vraag te staan welke rollen zij in deze nieuwe situatie willen vervullen. In dit promotieonderzoek willen we inzicht krijgen in de rollen die volwassen broers en zussen vervullen in het leven van mensen met (Z)EVMB. Wat zijn de ervaringen van broers en zussen en welke ondersteuningsbehoeften hebben zij? En wat betekent hun betrokkenheid voor de sociale contacten en participatie van hun broer of zus met (Z)EVMB? Ook willen we kijken naar de samenwerking tussen zorgprofessionals en familieleden van de tweede generatie. Hoe verloopt deze samenwerking en hoe wordt betrokkenheid van tweede generatie familieleden gefaciliteerd?
The central aim of this project is to increase the participation of people (all ages) with severe multiple disabilities (PIMD) in the field of sport, exercise and physical activity, by expanding the number of coaches and organizations who offer a Motor Activity Training Program in a professional and custom way. This aim will be achieved by the following activities:- Creating a more appropriate and varied offer of sport, exercise, and physical activity to increase the choice of the PIMD target group. - To develop a curriculum for MATP Coaches and Trainers (PE Teachers, Physical Therapists, etc). - To implement, test and contextualize a PIMD offer in 3 EU countries, this will be done with local stakeholders. - Strengthening the connection between sport, education and health care organizations to enable participation of the PIMD people in the field of sport, exercise, and physical activity. - Consortium members create a European network and exchange knowledge, including through best practices
