22 research outputs found

    Health Care Professionals’ perspectives on self-management for people with Parkinson’s: qualitative findings from a UK study

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    Background: Parkinson’s disease is a long-term, complex health condition. To improve or maintain quality of life, people with Parkinson’s can have an active involvement in their care through self-management techniques. Given the complexity and individualization of self-management, people with Parkinson’s will need support and encouragement from their healthcare professionals (HCPs). Despite the key role HCPs have in this, research has seldom explored their perspectives and understanding of self-management for people with Parkinson’s. Methods: Multi-disciplinary teams providing care for people with Parkinson’s across London, Coventry and Hertfordshire were approached and took part in either one of four focus groups or individual interviews. Forty-two HCPs, including a range of specialist doctors, general practitioners, allied health professionals, nurses, and social workers, took part in this study. Interviews were transcribed and analysed using thematic analysis to identify themes. Results: Four themes were developed from the data: 1) Empowerment of patients through holistic care and being person-centred; 2) Maximising motivation and capability for patients, for example using asset based approaches and increasing opportunities; 3) importance of empowerment of carers to support selfmanagement and 4) contextual barriers to self-management such as the social context. Conclusions: This study is the first to explore the perspectives of HCPs on self-management in people with Parkinson’s. Our findings have identified important considerations surrounding empowerment, motivation, carers and contextual barriers to better understand how we enable effective selfmanagement techniques in people with Parkinson’s. Research should build on these findings on to develop acceptable and effective self-management tools for use in practice with people affected by Parkinson’s

    Physical activity in wheelchair-using youth with spina bifida: an observational study

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    Background: Even though typically developing youth are already at risk for physical inactivity, youth with spina bifida may be even at higher risk as a consequence of their reduced mobility. No objective data is available for youth with spina bifida who use a manual wheelchair, so the seriousness of the problem is unknown. The purpose of this observational study was to quantify physical activity in wheelchair-using youth with spina bifida and evaluate the intensity of activities. Methods: Fifty-three children and adolescents (5–19 years) with spina bifida who use a manual wheelchair for daily life, long distances or sports were included. To assess time spent in several types of activities VitaMove data of 34 participants were used and were presented as time spent sedentary and time spent physically active. This was compared to reference data of typically developing youth. To assess time spent in several intensities Actiheart data of 36 participants were used. The intensities were categorized according to the American College of Sports Medicine, ranging from very light intensity to near to maximal intensity. Data of 25 participants were used to combine type of activity and intensity. Results: Children and adolescents with spina bifida who use a manual wheelchair were more sedentary (94.3% versus 78.0% per 24 h, p < 0.000) and less physically active (5.0% versus 12.2% per 24 h, p < 0.000) compared to typically developing peers. Physical activity during weekend days was worse compared to school days; 19% met the Guidelines of Physical Activity during school days and 8% during weekend days. The intensities per activity varied extensively between participants. Conclusions: Children and adolescents with spina bifida who use a manual wheelchair are less physically active and more sedentary than typically developing youth. The physical activity levels on school days seem to be more favorable than the physical activity levels on a weekend day. The low levels of physical activity need our attention in pediatric rehabilitation practice. The different intensities during activities indicate the importance of individually tailored assessments and interventions

    Keys to an open lock: Subject specific biomechanical modelling of luxations of the human temporomandibular joint

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    In this thesis, the aims are to: • increase the understanding of the interplay of morphological aspects, such as joint shape and muscle orientation, in open locks of the human temporomandibular joint. • increase the understanding of the biomechanics behind open locks of the temporomandibular joint. The kinetics will be studied to provide insight in the net effect of the acting muscle forces and joint reaction forces and their resulting moments. • improve the level of detail of the biomechanical model, to allow for tailor-made models at a patient level. The first chapters will deal with the application of a biomechanical model to normal function and to open locks. Chapter 2 will deal with the normal opening and closing movement of the mouth and will focus on the differences in temporomandibular joint loading between opening and closing. A sensitivity analysis of critical model parameters will be included. In Chapter 3, the roles of joint morphology and muscle morphology are investigated in relation to open locks, as well as their potential interplay. Chapter 4 will investigate relaxation and laterotrusion activation strategies that might enable the lower jaw to get out of an open lock. In chapter 5, the predictions about morphological parameters for open locks from chapter 3 will be tested in patients with symptomatic hypermobility, and compared with healthy controls. The joint shape and muscle morphology from cone beam computed tomography (CBCT) scans will be used as input parameters to fine-tune the musculoskeletal model. Herewith, individualized musculoskeletal models can be obtained, and risk assessment for open locks can be performed at an individual level. In chapter 6, a general discussion will be held on the model as well as on the results from the patient study. Furthermore, a case report will be interpreted in the framework of the International Classification of Functioning, Disability, and Health (World Health Organization, 2001). Future directions for research will be discussed as well
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