To identify areas of difficulty encountered by a regional wheelchair service in providing Electric Powered Indoor/outdoor wheelchairs (EPIOCs) to those with muscular dystrophy (MD) in the early years of their provision--particularly posture, pain and deformity.
Wheelchair service records of all users between April 1997 and March 2000 were reviewed retrospectively and issues relating to weakness, pain/discomfort, deformities, other medical issues, weight change, function, posture and driving were documented on a purpose-designed proforma. Adjustments and modifications were documented over the 2-year period following chair delivery.
Of 325 EPIOC users on the departmental database, 29 had MD (15 Duchenne's), whose users charts were reviewed. Almost 80% of users needed clinical review within 2 years, mostly due to a scoliosis. Other problems were postural (66%), medical (48%), pain (31%), functional (24%) and weight change (14%). The commonest prescriptions were for specialised seating (24%), lateral supports, headrests and footrests (21% each).
The rate of disease progression was not planned for by the service. Most clients were seen in response to deterioration, rather than anticipating it. Planned reviews within 1 year appear essential for teenagers with MD with the dual issues of rapid maturation and progressive disease.
[Show abstract][Hide abstract] ABSTRACT: "Virtual Coach" refers to a coaching program or device aiming to guide users through tasks for the purpose of prompting positive behavior or assisting with learning new skills. This article reviews virtual coach interventions with the purpose of guiding rehabilitation professionals to comprehend more effectively the essential components of such interventions, the underlying technologies and their integration, and example applications. A design space of virtual coach interventions including self-monitoring, context awareness, interface modality, and coaching strategies were identified and discussed to address when, how, and what coaching messages to deliver in an automated and intelligent way. Example applications that address various health-related issues also are provided to illustrate how a virtual coach intervention is developed and evaluated. Finally, the article provides some insight into addressing key challenges and opportunities in designing and implementing virtual coach interventions. It is expected that more virtual coach interventions will be developed in the field of rehabilitation to support self-care and prevent secondary conditions in individuals with disabilities.
Physical Medicine and Rehabilitation Clinics of North America 02/2010; 21(1):179-94. DOI:10.1016/j.pmr.2009.07.012 · 0.93 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This study explored the effects of electric-powered indoor/outdoor wheelchair (EPIOC) provision to users on their family and carers.
EPIOC users receiving their chairs between February and November 2002 (N = 74) were invited to participate in a telephone questionnaire/interview, and 64 agreed. This study examined the responses to the question 'Has the use of your EPIOC affected your family or friends in any way?' and related comments. Interviews were analysed using a qualitative framework approach to identify emergent themes. In addition, the proportion of individuals raising issues related to each theme was determined. Participants were interviewed 10-19 (mean = 14.3) months after chair delivery.
The following themes emerged: reduced physical burden on family/friends and increased independence and freedom. However, an EPIOC does not eliminate other practical problems particularly during transportation and negotiating kerbs and slopes. Users also reported anxiety/worry in relationship to EPIOC use, e.g., weather conditions, personal safety (muggings), use of ramps and kerbs.
There are considerable benefits to families and carers associated with powered wheelchair use. A reduction in the physical demand for pushing and increased freedom were identified. These benefits appear to outweigh the residual practical difficulties and worries.
Disability and rehabilitation. Assistive technology 04/2010; 5(5):327-38. DOI:10.3109/17483101003746352
[Show abstract][Hide abstract] ABSTRACT: Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis. However, medical care for patients with congenital muscular dystrophy remains very diverse. Advances in many areas of medical technology have not been adopted in clinical practice. The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/ nutrition/speech/oral care, cardiology, and palliative care. To achieve consensus on the care recommendations, 2 separate online surveys were conducted to poll opinions from experts in the field and from congenital muscular dystrophy families. The final consensus was achieved in a 3-day workshop conducted in Brussels, Belgium, in November 2009. This consensus statement describes the care recommendations from this committee.
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