Movement is an essential part of our lives. Throughout our lifetime, we acquire many different motor skills that are necessary to take care of ourselves (e.g., eating, dressing), to work (e.g., typing, using tools, care for others) and to pursue our hobbies (e.g., running, dancing, painting). However, as a consequence of aging, trauma or chronic disease, motor skills may deteriorate or become “lost”. Learning, relearning, and improving motor skills may then be essential to maintain or regain independence. There are many different ways in which the process of learning a motor skill can be shaped in practice. The conceptual basis for this thesis was the broad distinction between implicit and explicit forms of motor learning. Physiotherapists and occupational therapists are specialized to provide therapy that is tailored to facilitate the process of motor learning of patients with a wide range of pathologies. In addition to motor impairments, patients suffering from neurological disorders often also experience problems with cognition and communication. These problems may hinder the process of learning at a didactic level, and make motor learning especially challenging for those with neurological disorders. This thesis focused on the theory and application of motor learning during rehabilitation of patients with neurological disorders. The overall aim of this thesis was to provide therapists in neurological rehabilitation with knowledge and tools to support the justified and tailored use of motor learning in daily clinical practice. The thesis is divided into two parts. The aim of the first part (Chapters 2‐5) was to develop a theoretical basis to apply motor learning in clinical practice, using the implicit‐explicit distinction as a conceptual basis. Results of this first part were used to develop a framework for the application of motor learning within neurological rehabilitation (Chapter 6). Afterwards, in the second part, strategies identified in first part were tested for feasibility and potential effects in people with stroke (Chapters 7 and 8). Chapters 5-8 are non-final versions of an article published in final form in: Chapter 5: Kleynen M, Moser A, Haarsma FA, Beurskens AJ, Braun SM. Physiotherapists use a great variety of motor learning options in neurological rehabilitation, from which they choose through an iterative process: a retrospective think-aloud study. Disabil Rehabil. 2017 Aug;39(17):1729-1737. doi: 10.1080/09638288.2016.1207111. Chapter 6: Kleynen M, Beurskens A, Olijve H, Kamphuis J, Braun S. Application of motor learning in neurorehabilitation: a framework for health-care professionals. Physiother Theory Pract. 2018 Jun 19:1-20. doi: 10.1080/09593985.2018.1483987 Chapter 7: Kleynen M, Wilson MR, Jie LJ, te Lintel Hekkert F, Goodwin VA, Braun SM. Exploring the utility of analogies in motor learning after stroke: a feasibility study. Int J Rehabil Res. 2014 Sep;37(3):277-80. doi: 10.1097/MRR.0000000000000058. Chapter 8: Kleynen M, Jie LJ, Theunissen K, Rasquin SM, Masters RS, Meijer K, Beurskens AJ, Braun SM. The immediate influence of implicit motor learning strategies on spatiotemporal gait parameters in stroke patients: a randomized within-subjects design. Clin Rehabil. 2019 Apr;33(4):619-630. doi: 10.1177/0269215518816359.
BackgroundPeople with intellectual disabilities (ID) have a lower life expectancy than their peers without ID. A contributing factor to the lower life expectancy and early mortality could be sarcopenia: low muscle mass and low muscle function. In the general population, sarcopenia strongly predicts early mortality, but this association is unknown in people with ID. Therefore, this study aims to explore the association between sarcopenia and 5-year mortality in older adults with ID.MethodsIn the Healthy Ageing and Intellectual Disabilities (HA-ID) study, the prevalence of sarcopenia was measured at baseline among 884 older adults (≥50 years) with ID. All-cause mortality was measured over a 5-year follow-up period. Univariable and multivariable Cox proportional hazard models were applied to determine the association between sarcopenia (no sarcopenia, pre-sarcopenia, sarcopenia, severe sarcopenia) and early mortality, adjusted for age, sex, level of ID, presence of Down syndrome, and co-morbidity (chronic obstructive pulmonary disease, diabetes type 2 and metabolic syndrome).ResultsThe unadjusted hazard ratio (HR) for sarcopenia was 2.28 [95% confidence interval (CI) 1.48–3.42], P < 0.001), and 2.40 (95% CI 1.40–4.10, P = 0.001) for severe sarcopenia. When adjusted for age, sex, level of ID, and Down syndrome, sarcopenia (HR = 1.72, 95% CI 1.08–2.75, P = 0.022) and severe sarcopenia (HR = 1.86, 95% CI 1.07–3.23, P = 0.028) were significantly associated with early mortality. When additionally adjusted for co-morbidity, the adjusted HR decreased to 1.62 (95% CI 1.02–2.59, P = 0.043) and 1.81 (95% CI 1.04–3.15, P = 0.035) for sarcopenia and severe sarcopenia, respectively.ConclusionSarcopenia is an independent risk factor for early mortality in older adults with ID over a 5-year follow-up period. Our results stress the need to delay the incidence and development of sarcopenia in older adults with ID.
Background: Intellectual disability (ID) is a developmental disorder that causes considerably below-average intellectual performance and adaptive behaviour. In the context of the present study, families raising a child with ID are reported to experience multiple challenges that appear not to be well documented in Pakistan. Methods and procedures: Pakistan, which was conducted in Karachi, Pakistan, followed participatory action research, in which the researcher and participants examined their existing experiences of informal social support and then created, implemented, and evaluated actions to strengthen this informal social support. A total of five families (n = 25) participated in the study. These participating families comprise parents, siblings, and significant others, i.e., aunts, uncles, and grandparents, living with the child with ID. Families with children with ID were selected through a school for children with ID who are under 12 years old. This qualitative action research was conducted in two distinct parts, i.e., a) exploratory part and b) action part. This paper presents the findings of the first exploratory part of the study. Aim: The exploratory phase aimed to explore and examine the experiences and challenges families may experience with informal social support while caring for a child with an intellectual disability in Karachi, Pakistan. Findings: Parents often sacrifice their personal needs and aspirations for their children, leading to decreased tolerance and anxiety. Lack of communication, support, and assistance from family members is another significant issue. Stigmatisation and discrimination from school, relatives, and friends can cause depression and distress. The study emphasises the need for a unified and coordinated approach to support and care. Religious beliefs, siblings, and close friends provide comfort and well-being. When parents manage to connect with similar families, they have the opportunity to express a collective commitment to caregiving. Conclusion: To strengthen the situation, families propose enhancing intimacy and competency within homes and taking action at the governmental level. Governments must provide appropriate services, such as nurses supporting families, support groups, and religious traditions, to promote acceptance and holistic development for intellectually disabled children.
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’).
