ObjectiveFirst, to make an inventory of activity limitations commonly reported by knee osteoarthritis (OA) patients undergoing multidisciplinary rehabilitation. Second, to evaluate treatment outcome using the Patient Specific Functional Scale (PSFS) and compare it to the Western Ontario and McMasters Universities Osteoarthritis Index physical function subscale (WOMAC-pf).DesignAn observational study with assessments before and immediately after multidisciplinary rehabilitation. Five hundred and thirteen patients used the PSFS, a patient-reported tool to identify activity limitations and score the patient's ability to perform the activity on an 11-point Numeric Rating Scale (NRS), to report three activities in which they were limited. Frequencies and percentages of their highest-prioritized activity were calculated and categorized according to the International Classification of Functioning, Disability, and Health (ICF). Paired-samples T-tests were used to analyze the change in ability to perform the activities. Effect sizes of PSFS and WOMAC-pf were compared.ResultsMost patients indicated limitations in walking, walking up/down stairs, prolonged standing, and standing up from a chair. Following these common activities, 26 different activities were identified. The majority of these highest-prioritized activities fell under the first-level ICF category of Mobility. The ability to perform all activities significantly improved after treatment. Effect sizes ranged between 0.60 and 0.97 and were greater than the effect size of the WOMAC-pf (0.41).ConclusionKnee OA patients who undergo multidisciplinary rehabilitation exhibit improvements in performing daily activities. The PSFS is a valuable tool to evaluate patient-specific activity limitations and seems to capture improvements in activity limitations beyond the WOMAC-pf.
Maintaining independence is the most important goal of the majority of older people. The onset of disability in activities of daily living is one of the greatest threats to the ability of older people to live independently. Older people with a low socioeconomic status (SES) are at high risk of functional decline. It is unclear what predicts functional decline in older people with a low SES. The aim of this study was to determine predictors of 12-month functional decline in community-living older people with low SES in the Netherlands. Functional decline was defined as the inability to perform (instrumental) activities of daily living. A prognostic multicentre study was conducted, using data from The Dutch Older Persons and Informal Caregivers Survey Minimum DataSet. A multivariable logistic regression model was fitted, using a stepwise backward selection process. Performance of the model was expressed by discrimination, calibration and accuracy. A total of 4.370 participants were included. The mean age of the participants was 80 years and 58.9% were female. Functional decline was present in 1486 participants (34.0%). Ten predictors were independently associated with the outcome. Dementia was the strongest predictor (OR 1.83, 95% CI 1.04–3.23). Other predictors were age, education, poor health, quality of life rate, arthrosis/arthritis, hearing problems, anxiety/panic disorder, pain and less social activities. The final model showed an acceptable discrimination (C-statistic 0.69, 95% CI 0.67–0.70), calibration (Hosmer-Lemeshow p-value 0.33) and accuracy (Brier score 0.20). Further research is needed to examine how functional decline can be ameliorated in this population.
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Ambient activity monitoring systems produce large amounts of data, which can be used for health monitoring. The problem is that patterns in this data reflecting health status are not identified yet. In this paper the possibility is explored of predicting the functional health status (the motor score of AMPS = Assessment of Motor and Process Skills) of a person from data of binary ambient sensors. Data is collected of five independently living elderly people. Based on expert knowledge, features are extracted from the sensor data and several subsets are selected. We use standard linear regression and Gaussian processes for mapping the features to the functional status and predict the status of a test person using a leave-oneperson-out cross validation. The results show that Gaussian processes perform better than the linear regression model, and that both models perform better with the basic feature set than with location or transition based features. Some suggestions are provided for better feature extraction and selection for the purpose of health monitoring. These results indicate that automated functional health assessment is possible, but some challenges lie ahead. The most important challenge is eliciting expert knowledge and translating that into quantifiable features.
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’).
In leaving the more traditional territories of the concert performance for broader societal contexts, professional musicians increasingly devise music in closer collaboration with their audience rather than present it on a stage. Although the interest for such forms of devising co-creative musicking within the (elderly) health care sector is growing, the work can be considered relatively new. In terms of research, multiple studies have sought to understand the impact of such work on musicians and participants, however little is known about what underpins the musicians’ actions in these settings. With this study, I sought to address this gap by investigating professional musicians’ emerging practices when devising co-creative musicking with elderly people. Three broad concepts were used as a theoretical background to the study: Theory of Practice, co-creative musicking, and Praxialism. Firstly, I used Theory of Practice to help understand the nature of emerging practices in a wider context of change in the field of music and habitus of musicians and participants. Theory of Practice enabled me to consider a practice as “a routinized type of behaviour which consists of several elements, interconnected to one another: forms of bodily activities, forms of mental activities, ‘things’ and their use, a background knowledge in the form of understanding, know-how, states of emotion, and motivational knowledge” (Reckwitz, 2002, p. 249). Secondly, I drew the knowledge from co-creative musicking, which is a concept I gathered from two existing concepts: co-creation and musicking. Musicking (Small, 1998), which considers music as something we do (including any mode of engagement with music), provided a holistic and inclusive way of looking at participation in music-making. The co-creation paradigm encompasses a view on enterprise that consists of bringing together parties to jointly create an outcome that is meaningful to all (Prahalad & Ramaswamy, 2004; Ramaswamy & Ozcan, 2014). The concept served as a lens to specify the jointness of the musicking and challenge issues of power in the engagement of participants in the creative-productive process. Thirdly, Praxialism considers musicking as an activity that encompasses “musical doers, musical doing, something done and contexts in which the former take place” (Elliott, 1995). Praxialism sets out a vision on music that goes beyond the musical work and includes the meanings and values of those involved (Silverman, Davis & Elliott, 2014). The concept allowed me to examine the work and emerging relationships as a result of devising co-creative musicking from an ethical perspective. Given the subject’s relative newness and rather unexplored status, I examined existing work empirically through an ethnographic approach (Hammersley & Atkinson, 2007). Four cases were selected where data was gathered through episodic interviewing (Flick, 2009) and participant observation. Elements of a constructivist Grounded Theory (Charmaz, 2014) were used for performing an abductive analysis. The analysis included initial coding, focused coding, the use of sensitizing concepts (Blumer 1969 in Hammersley, 2013) and memoing. I wrote a thick description (Geertz, 1973) for each case portraying the work from my personal experience. The descriptions are included in the dissertation as one separate chapter and foreshadow the exposition of the analysis in a next chapter. In-depth study of the creative-productive processes of the cases showed the involvement of multiple co-creative elements, such as a dialogical interaction between musicians and audience. However, participants’ contributions were often adopted implicitly, through the musicians interpreting behaviour and situations. This created a particular power dynamic and challenges as to what extent the negotiation can be considered co-creative. The implicitness of ‘making use’ of another person’s behaviour with the other not (always) being aware of this also triggered an ethical perspective, especially because some of the cases involved participants that were vulnerable. The imbalance in power made me examine the relationship that emerges between musicians and participants. As a result of a closer contact in the co-creative negotiation, I witnessed a contact of a highly personal, sometimes intimate, nature. I recognized elements of two types of connections. One type could be called ‘humanistic’, as a friendship in which there is reciprocal care and interest for the other. The other could be seen as ‘functional’, which means that the relationship is used as a resource for providing input for the creative musicking process. From this angle, I have compared the relationship with that of a relationship of an artist with a muse. After having examined the co-creative and relational sides of the interaction in the four cases, I tuned in to the musicians’ contribution to these processes and relationships. I discovered that their devising in practice consisted of a continuous double balancing act on two axes: one axis considers the other and oneself as its two ends. Another axis concerns the preparedness and unpredictability at its ends. Situated at the intersection of the two axes are the musicians’ intentionality, which is fed by their intentions, values and ethics. The implicitness of the co-creation, the two-sided relationship, the potential vulnerability of participants, and the musicians’ freedom in navigating and negotiation, together, make the devising of co-creative musicking with elderly people an activity that involves ethical challenges that are centred around a tension between prioritizing doing good for the other, associated with a eudaimonic intention, and prioritizing values of the musical art form, resembling a musicianist intention. The results therefore call for a musicianship that involves acting reflectively from an ethical perspective. Doctoral study by Karolien Dons
The clubfoot deformity is one of the most common congenital orthopaedic “conditions”. Worldwide approximately 100,000 children are born with unilateral or bilateral clubfoot every year. In the Netherlands the incidence is approximately 175 every year. This three dimensional deformity of the foot involves, equinus, varus, adductus, and cavus . Left untreated the clubfoot leads to deformity, functional disability and pain. Physical impairments of children with clubfoot might lead to limitations in activities and therefore impede a child’s participation. In clinical practice, the orthopaedic surgeon and physiotherapists are regularly consulted by (parents of) clubfoot patients for functional problems such as impaired walking and other daily activities. This does not only affect long-term and physical health of a child, it will also affect the development of social relationships and skills as well. Since walking is a main activity in children to be able to participate in daily life, our previous study (financially supported by SIA Raak Publiek) focussed on gait differences between children with clubfoot and controls. However, differences in gait characteristics do not necessarily lead to functional limitations and restricted participation. Therefore, providing insight in participation and a child’s performance in other activities than walking is necessary. Insight in a child’s participation will also indicate the functional outcome of the treatment, which on its turn could provide essential information concerning a possible relapse.. Early identification of a relapse is important since it could prevent the need for major surgical interventions. The occurrence of a relapse clubfoot will probably also lead to functional differences in the foot as well as problems during activity and participation. Therefore, the main focus of this study is the functional outcomes of physical activities and the characterisation of participation of children with clubfeet in daily activities of childhood.
