To address a gap between spinal cord injury (SCI) research and practice by rigorously and systematically co-developing integrated knowledge translation (IKT) guiding principles for conducting and disseminating SCI research in partnership with research users. Design: The process was guided by the internationally accepted The Appraisal of Guidelines for REsearch & Evaluation (AGREE) II Instrument for evaluating the development of clinical practice guidelines. Setting: North American SCI research system (ie, SCI researchers, research users, funders). Participants: The multidisciplinary expert panel (nZ17) and end users (nZ35) included individuals from a North American partnership of SCI researchers, research users, and funders who have expertise in research partnerships. Interventions: Not applicable. Main Outcome Measures: Clarity, usefulness, and appropriateness of the principles. Results: Data regarding 125 principles of partnered research were systematically collected from 4 sources (review of reviews, scoping review, interviews, Delphi consensus exercise). A multidisciplinary expert panel held a 2-day meeting to establish consensus, select guiding principles, and draft the guidance. The panel reached 100% consensus on the principles and guidance document. The final document includes a preamble,
Objectives: To explore experiences of fatigue among people with spinal cord injuries (SCIs) and factors perceived to contribute to fatigue. Setting: Kelowna, Prince George, Vancouver and Victoria, British Columbia, Canada. Study design: Collaborative, qualitative methodology. Methods: Four focus groups were undertaken simultaneously with a total of 29 participants, comprising a purposive sample of men and women: 21 people with complete and incomplete SCI of high and low tetraplegia and paraplegia, 2 family members, 2 assistants and 4 occupational therapists. Interpretive analysis was grounded in the themes identified in the data. Results: Fatigue was perceived to have cognitive, emotional and physical dimensions and to exert a profound effect on the lives of many people with SCI, such that pleasurable activities were often eschewed to enable the accomplishment of more mundane tasks. Factors most consistently associated with fatigue were pain, depression and hopelessness, side effects of medications, poor quality sleep, spasticity, poor posture, diet, and the effort required to accomplish routine and self-care tasks. Conclusions: Fatigue is a complex phenomenon, interlinked with pain, depression and hopelessness that significantly diminishes the quality of life following SCI. Further research is required to provide greater understanding of this issue and to determine appropriate and comprehensive forms of intervention.
Client-centred principles appear to require occupational therapists to undertake collaborative research and to ensure that research agendas are informed by clients' priorities. Commitment to client-centred principles demands concerted efforts to identify and address potential barriers to meaningful client participation in the occupation of research. However, it is argued that if researchers and disabled people collaborate, and pool their knowledge and expertise, they may achieve research that is more philosophically compatible with espoused professional values; and that collaborative research may also inform more relevant and useful client-centred clinical practices.
The first year of a twin study undertaken between two occupational therapy programs in Canada and New Zealand is described. The primary aims of the study were to illuminate the lived experiences of students as they learn about cultural difference and had contact with clients of differing cultural backgrounds to themselves during fieldwork placements. While there are similarities between educational programs and the demographic profiles of the two cohorts of students, there are curricular differences primarily based on the described socio-political content of the two countries; Aotearoa/New Zealand as a bicultural society and Canada as multicultural. The paper discusses how these cultural differences interweave with other aspects of the students' educational program, as perceived and experienced by the students. Narrative data was thematically analyzed to reflect the experiences and the attendant thoughts and feelings of the participants.
Background:The Multiple Sclerosis Self-Management Scale (MSSM) is currently the only measure that was developed specifically to address self-management among individuals with multiple sclerosis (MS). While good internal consistency (α = 0.85) and construct validity have been demonstrated, other psychometric properties have not been established. This study was undertaken to evaluate the criterion validity, test-retest reliability, and face validity of the MSSM.
BackgroundPrevious evidence suggests the effects of task-specific therapy can be further enhanced when sensory stimulation is combined with motor practice. Sensory tongue stimulation is thought to facilitate activation of regions in the brain that are important for balance and gait. Improvements in balance and gait have significant implications for functional mobility for people with incomplete spinal cord injury (iSCI). The aim of this case study was to evaluate the feasibility of a lab- and home-based program combining sensory tongue stimulation with balance and gait training on functional outcomes in people with iSCI.MethodsTwo male participants (S1 and S2) with chronic motor iSCI completed 12 weeks of balance and gait training (3 lab and 2 home based sessions per week) combined with sensory tongue stimulation using the Portable Neuromodulation Stimulator (PoNS). Laboratory based training involved 20 minutes of standing balance with eyes closed and 30 minutes of body-weight support treadmill walking. Home based sessions consisted of balancing with eyes open and walking with parallel bars or a walker for up to 20 minutes each. Subjects continued daily at-home training for an additional 12 weeks as follow-up.ResultsBoth subjects were able to complete a minimum of 83% of the training sessions. Standing balance with eyes closed increased from 0.2 to 4.0 minutes and 0.0 to 0.2 minutes for S1 and S2, respectively. Balance confidence also improved at follow-up after the home-based program. Over ground walking speed improved by 0.14 m/s for S1 and 0.07 m/s for S2, and skilled walking function improved by 60% and 21% for S1 and S2, respectively.ConclusionsSensory tongue stimulation combined with task-specific training may be a feasible method for improving balance and gait in people with iSCI. Our findings warrant further controlled studies to determine the added benefits of sensory tongue stimulation to rehabilitation training.
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