A mixed-methods study exploring and comparing the experiences of people who sustained a spinal cord injury earlier versus later in life.

STUDY DESIGN: Mixed-methods. OBJECTIVES: (1) To explore psychosocial and quality of life outcomes between those injured early versus later in life, and (2) to explore their post-injury experiences. SETTING: GF Strong Rehabilitation Centre, Vancouver, Canada. METHODS: For this community-based study, we recruited individuals with SCI (>55 years of age) who were either injured between the ages of 15-30 (n = 15) or after the age of 50 (n = 15). We collected quantitative data about participants' sociodemographics and participants completed standardised questionnaires assessing personal factors, environmental factors, life habits, and quality of life. An independent samples t test was performed for continuous variables and the Chi-square test was conducted for the categorical variables. Qualitative data were collected via semi-structured interviews. Thematic content analysis was performed on the interview transcripts. RESULTS: We found no statistically significant differences between the two groups on any of the psychosocial outcomes. However, those injured later in life were significantly more likely to be female, have a higher income, and live in residential care. We identified three main qualitative themes that were consistent across the two groups: 'dealing with health and changes in occupation', 'enacting interdependence', and 'living in the community'. Some sub-themes varied between groups. CONCLUSIONS: To facilitate better rehabilitation, clinicians need to be aware of disparities among people with SCI relating to age of injury. Across age cohorts, it is important to increase independence, provide greater support when entering or returning to the workforce, and reduce societal stigma.

Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership.

OBJECTIVE: 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 (n=17) and end users (n=35) 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, 8 guiding principles, and a glossary. Survey data showed that the principles and guidance document were perceived by potential end users as clear, useful, and appropriate. CONCLUSIONS: The IKT Guiding Principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI research partnerships. The principles are a foundational tool with the potential to improve the relevance and impact of SCI research, mitigate tokenism, and advance the science of IKT.

Occupational Performance Issues of Adults Seeking Bariatric Surgery for Obesity.

OBJECTIVE: We sought to describe the occupational performance issues of a sample of bariatric surgery candidates and to explore the relationships among occupational performance, satisfaction with performance, demographic characteristics, and mental health factors. METHOD: We reviewed the health records of 241 bariatric surgery candidates and analyzed their scores on the Canadian Occupational Performance Measure (COPM) and standardized mental health questionnaires. RESULTS: Exercise and eating behavior were the most common occupational performance issues. Cognitive and affective issues were reported more frequently than physical issues. Occupational performance and satisfaction correlated negatively with anxiety and depression and positively with self-esteem. Self-esteem contributed 27% of the variance in occupational performance. CONCLUSION: COPM scores revealed a wide range of occupational performance issues and significant associations with mental health factors, supporting a psychosocial approach to occupational therapy with this population. Routine mental health screening can help ensure that mental health factors are adequately addressed.

Feasibility of sensory tongue stimulation combined with task-specific therapy in people with spinal cord injury: a case study.

BACKGROUND: Previous 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. METHODS: Two 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. RESULTS: Both 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. CONCLUSIONS: Sensory 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.

Understanding occupation in Canada: Recent graduates' perspectives.

BACKGROUND: A robust occupational perspective can fortify an occupational therapist's professional identity, which is especially important as occupational therapists can struggle with professional identity. Occupational therapy curricula are critical to the development of an occupational perspective. Recent graduates can offer valuable insights on an occupational perspective, having transitioned from occupation-centred curricula into often medicalised practice settings. AIMS: This study explored how recent graduates from Canadian entry-level occupational therapy master's programs understand the concept of occupation. MATERIALS AND METHODS: Using an interpretive descriptive approach, rooted in constructivism, 13 English-speaking graduates (2017, 2018, 2019) from Canadian entry-level occupational therapy master's programs were purposively recruited to participate in semi-structured interviews. Reflexive thematic analysis was used to analyse data, informed by reflexivity and member-checking. RESULTS: Four themes were described: (1) occupation: more than doing, (2) occupation is broad, abstract, and context-dependent, (3) occupation is not well understood: the fall out, and (4) navigating the challenge of describing occupation. CONCLUSION: Participants' experiences aligned with much of the previous literature, including the challenges of describing occupation and frustrations with navigating this in practice. Yet, participants described how flexible and critical understandings of occupation facilitate the use of an occupational perspective across practice settings, supporting professional resilience.

Teaching and Evaluating an Occupational Perspective in Canada: A Descriptive Qualitative Study.

Background. Occupation is the core domain of occupational therapy, and an occupational perspective is foundational for practice. Research has explored how an occupational perspective is taught. Yet, little has explored the Canadian occupational therapy educational context. There are national differences in core competencies and accreditation standards and nuances in how occupation is defined and what conceptual models are used. As such, a Canadian perspective may offer new understandings of value both within and outside of Canada. Purpose. To understand how, in Canada, educators teach and evaluate student occupational perspectives in entry-level master of occupational therapy programs. Method. This study used a descriptive qualitative design with an interpretive approach. Semi-structured interviews were used to gather data from 12 educators from Canadian entry-level occupational therapy programs. Reflexive thematic analysis was used for data analysis. Findings. Five themes were identified: (1) occupational perspectives as pedagogy (2) it's a process, not an end state; (3) "everybody is involved": a community of educators; (4) thinking critically; and (5) "hard to evaluate." Conclusion. The complex, dynamic, and contextualized nature of an occupational perspective calls for critical, reflexive, communal, and innovative pedagogical and assessment approaches.

The Impact of COVID-19-Related Restrictions on Social and Daily Activities of Parents, People With Disabilities, and Older Adults: Protocol for a Longitudinal, Mixed Methods Study.

BACKGROUND: The COVID-19 pandemic has led to wide-scale changes in societal organization. This has dramatically altered people's daily activities, especially among families with young children, those living with disabilities such as spinal cord injury (SCI), those who have experienced a stroke, and older adults. OBJECTIVE: We aim to (1) investigate how COVID-19 restrictions influence daily activities, (2) track the psychosocial effects of these restrictions over time, and (3) identify strategies to mitigate the potential negative effects of these restrictions. METHODS: This is a longitudinal, concurrent, mixed methods study being conducted in British Columbia (BC), Canada. Data collection occurred at four time points, between April 2020 and February 2021. The first three data collection time points occurred within phases 1 to 3 of the Province of BC's Restart Plan. The final data collection coincided with the initial distribution of the COVID-19 vaccines. At each time point, data regarding participants' sociodemographics, depressive and anxiety symptoms, resilience, boredom, social support, instrumental activities of daily living, and social media and technology use were collected in an online survey. These data supplemented qualitative videoconference interviews exploring participants' COVID-19-related experiences. Participants were also asked to upload photos representing their experience during the restriction period, which facilitated discussion during the final interview. Five groups of participants were recruited: (1) families with children under the age of 18 years, (2) adults with an SCI, (3) adults who experienced a stroke, (4) adults with other types of disabilities, and (5) older adults (>64 years of age) with no self-reported disability. The number of participants we could recruit from each group was limited, which may impact the validity of some subgroup analyses. RESULTS: This study was approved by the University of British Columbia Behavioural Research Ethics Board (Approval No. H20-01109) on April 17, 2020. A total of 81 participants were enrolled in this study and data are being analyzed. Data analyses are expected to be completed in fall 2021; submission of multiple papers for publication is expected by winter 2021. CONCLUSIONS: Findings from our study will inform the development and recommendations of a new resource guide for the post-COVID-19 period and for future public health emergencies. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/28337.

Managing fatigue following spinal cord injury: a qualitative exploration.

PURPOSE: To identify, from the perspectives of people with spinal cord injury (SCI), (a) appropriate components of a fatigue management programme; and (b) important outcomes or indicators of success. METHOD: Collaborative, qualitative methodology comprising four focus groups undertaken simultaneously in Kelowna, Prince George, Vancouver and Victoria, British Columbia, Canada. Participants included a purposive sample of 21 men and women with complete and incomplete SCI of high and low tetraplegia and paraplegia. Two family members, two care-providing assistants and four occupational therapists provided additional information (total n=29). Interpretive data analysis identified common themes addressing each research question. RESULTS: Building on those strategies they perceived to facilitate coping with fatigue, the participants identified 10 components of a helpful fatigue management programme. Dimensions of 'successful' outcomes from such a programme reflected quality of life concerns: enabling people with SCI to do the things they value, enhancing their sense of control over their lives, reducing pain and helplessness, increasing motivation and enhancing relationships strained by fatigue. CONCLUSIONS: This study identifies many of the necessary elements of a fatigue management programme to meet the specific needs of people with SCI; and ascertains important indicators of a successful programme from the perspectives of those who must live with the outcomes.

A cognitive occupation-based programme for people with multiple sclerosis: A new occupational therapy cognitive rehabilitation intervention.

INTRODUCTION: Cognitive difficulties have been reported to have the greatest effect on function and quality of life in people with multiple sclerosis, affecting 50-60% of people. To date, few interventions have been developed to treat cognitive issues in multiple sclerosis. Here we report on a Cognitive Occupation-Based programme (COB-MS) for people with Multiple Sclerosis an evidence-based intervention to address everyday problems encountered due to cognitive difficulties. The aim of this research was to explore the views of people with multiple sclerosis and occupational therapists on the programme and its potential implementation in practice. METHODS: Data were elicited from a purposive sample of 12 people from two stakeholder groups, people with multiple sclerosis (n = 5) and occupational therapists (n = 7), through focus groups and interviews. The programme and related materials were presented, and contributions recorded, transcribed and thematically analysed. RESULTS: Two main themes were identified from analysis of the data: response to the intervention and challenges to implementing the programme. Occupational therapists agreed that the COB-MS is client-centred. People with multiple sclerosis thought that it was a validating intervention. The overall format was viewed to be useful and feasible. CONCLUSION: The COB-MS for people with Multiple Sclerosis is the first known cognitive intervention using an occupation frame of reference to address difficulties faced among persons with multiple sclerosis and was found to be timely and relevant to the needs of the population.

"Waiting for Science to Catch up with Practice": an examination of 10-year YouTube trends in discussions of chronic cerebral spinal venous insufficiency treatment for multiple sclerosis.

Objective: The objective of this longitudinal study examined, first, whether people with multiple sclerosis who previously advocated for angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI) through YouTube continued reporting benefits. Second, it examined a new cohort reporting on CCSVI treatment, and third, whether perspectives have changed.Method: YouTube videos from August 2011 to January 2019 related to CCSVI were retrieved. Once retrieved, all videos were compiled, classified and analyzed. Categorical data were reported and a pre-determined code-book was used to code videos. Data from the videos were extracted and analyzed using discourse analysis.Results: 1293 videos related to CCSVI were uploaded by 54 people with multiple sclerosis who met the inclusion criteria. YouTube videos uploaded by people with multiple sclerosis have shifted in volume and message. The initial surge in interest in CCSVI treatment has diminished, but there still exists strong advocates for its use. There appears to be an inconsistency between positive results, actual improvements in symptoms, and the overall messages reported. Very little long-term data was available as the procedure is relatively new.Conclusion: Practitioners may be faced with pressure to provide unproven treatments in the future and should be understanding but evidence-driven when supporting multiple sclerosis therapies.

Multiple sclerosis self-management model: Personal and contextual requirements for successful self-management.

OBJECTIVE: To explore self-management strategies used by people with multiple sclerosis (MS) with aim of developing a MS self-management model. METHODS: A grounded theory approach guided development of a MS self-management model. Eighteen individuals living with MS for three or more years and self-identifying as successfully managing their MS were interviewed twice using semi-structured face-to-face or telephone interviews six months apart. Demographic and disease characteristics were descriptively analyzed. Field notes and interview data were qualitatively analyzed to identify concepts and categories. RESULTS: The emerging model revealed six person-related categories describing self-management strategies: adjusting outlook, managing stress, managing symptoms, healthy lifestyle, effective communication, and setting priorities and planning. Three context-related categories that required successful navigation for self-management were also identified: physical environment, personal social network, and community services and resources. CONCLUSIONS: The emerging self-management model that is grounded in the perspective of people with MS includes person and context-related strategies that can be used concurrently to guide self-management in the variety of challenges experienced by people with MS. PRACTICAL IMPLICATIONS: A self-management model of MS is useful to service providers, health professionals, advocacy organizations and people with MS to draw upon an organized and comprehensive approach to self-management.

Upper Limb Intention Tremor in Multiple Sclerosis: An Evidence-Based Review of Assessment and Treatment.

BACKGROUND: To present the current knowledge on the characteristics, assessment, and treatment of upper limb intention tremor to inform and improve future intervention studies in patients with multiple sclerosis (MS), we conducted a literature review for articles on upper limb intention tremor in patients with MS. METHODS: Two reviewers conducted searches in PubMed, Web of Science, and MEDLINE (Ovid). Relevant articles, sorted on inclusion criteria, were examined for descriptions and assessments of upper limb intention tremor, and intervention studies were evaluated based on treatment type. RESULTS: Eight descriptive studies were found reporting on the incidence and severity of tremor, impairments, and lesion load. Ten studies focused on measurement of tremor using various assessments. Intervention studies included eight articles using a diverse set of noninvasive techniques mainly showing transient reduction in tremor amplitude and temporary increase in function. Eighteen studies on pharmacologic interventions were found, with most displaying positive outcomes and mediation of tremor; others showed little to no benefit. Surgical interventions included 17 studies on thalamotomy and 20 on deep brain stimulation. Most studies showed tremor improvement after surgery; however, most sample sizes were small, and interventions were highly invasive, with potential adverse effects resulting from surgery. CONCLUSIONS: The literature on upper limb intention tremor in MS is relatively sparse. More studies are required to determine mechanism of action and to provide more suitable and sustainable interventions to decrease upper limb intention tremor and improve quality of life of individuals with MS.

Occupational therapy private practice workforce: Issues in the 21st century: La main-œuvre en ergothérapie dans le secteur privé : Les enjeux du 21e siècle.

BACKGROUND: The number of occupational therapists working in the private sector in British Columbia (BC) has risen steadily since 2008, employing approximately 25.7% of occupational therapists by 2012. Processes used to determine workforce needs for occupational therapists in BC have previously overlooked this growing sector. PURPOSE: This study aims to describe the supply, demand, and workforce needs for occupational therapists in BC's private sector. METHOD: This exploratory study used a sample of occupational therapists and employers of occupational therapists in BC's private sector. Data collection included an online survey that collected information about the workplace and supply and demand needs. Descriptive data analysis was conducted on the survey data, and thematic analysis was used to organize participants' comments into categories. FINDINGS: In addition to identifying current supply, this study identifies barriers, facilitators, projected movement in and out of the sector, and current and future demand for occupational therapists. IMPLICATIONS: This study supports the need for an increase in supply of occupational therapists in the private sector to fulfill the current and future workforce demands.

Types and categories of personal projects: a revelatory means of understanding human occupation.

Choice of activity and the way it is described may have little to do with the presence of disease and may or may not align with predetermined conceptual or practice frameworks. The present study examines data previously collected by use of Personal Projects Analysis (PPA) in order to compare the types of projects listed by people with and without multiple sclerosis and to compare the categories of projects selected by both groups to those pre-established in the literature. Secondary analysis tests the differences and similarities in the types of personal projects between two groups, multiple sclerosis (n = 38) and control group (n = 25), matched for demographic characteristics. The analysis compares the categories of personal projects generated by people in both cohorts to pre-established frameworks. No significant difference was found between the types of personal projects chosen by the two cohorts. For 57.2% of participants the self-generated categories matched those from the literature, whereas it diverged for 18.2% of the categories of personal projects generated by participants. The study demonstrates that people with and without multiple sclerosis engage in activities that are similar despite the presence of multiple sclerosis, and that category systems should be used cautiously.

Employment after spinal cord injury: the impact of government policies in Canada.

The British Columbia Paraplegic Association (BCPA) sought a research partnership to evaluate where its activities should be focused. A survey of members with disabilities of the BCPA included questions on employment and identified three priorities related to employment. These were the need for assistance in finding appropriate work, the impact of policies of government and insurance agencies, and attitudes of employers. This paper examines the social and political environment related to employment following spinal cord injury in British Columbia, Canada. There is no coherent set of goals underlying government employment and income programs in Canada. Incremental development of particular employment and income programs during the 20th century led to a patchwork of policies and programs, which deal with people differently according to the cause of their disability. Federal and provincial governments have attempted to educate employers and reduce barriers to employment of those with disabilities by focusing on anti-discrimination legislation and individual rights (e.g. the Employment Equity Act and the Canadian Human Rights Act). However, people with disabilities face non-accommodating environments, inadequate income support, lack of opportunities and little political influence which stem from an unfair distribution of societal resources, not from discrimination. Joint efforts of the BCPA and other disability organizations are likely to have the most impact on legislative changes.

Social Media Representation of Chronic Cerebrospinal Venous Insufficiency Intervention for Multiple Sclerosis.

BACKGROUND: We conducted a rigorous review of videos related to multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI) treatment posted by people with MS on one social media website (YouTube) that describe symptoms before and after the surgical procedure, as well as videos presented by health-care professionals (HCPs). METHODS: All relevant videos posted from December 2009 to July 2011 were downloaded, viewed, and systematically organized. Categorical data were classified, and dominant messages were gleaned. RESULTS: A total of 1789 videos were extracted. A total of 621 videos by people with MS and 238 by HCPs were included. Eighty-six percent of people with MS anecdotally reported experiencing some improvement in at least one symptom. The most common message was that "CCSVI is not a miracle but worth trying." Most HCPs posting videos recommended the procedure but called for continued research. CONCLUSIONS: Social media are conveying an anecdotal favorable message about CCSVI treatment for MS. The relative absence of videos offering a negative or more balanced perspective is a concern. Social persuasion through these videos creates a strong positive impression of CCSVI treatment, but the videos do not acknowledge the lack of supporting scientific evidence and the possible role of the placebo effect. Given the strong influence of social media on health-care decision making, researchers and clinicians should actively use social media to reach out to people with MS and describe the state of the evidence for MS treatments, both positive and negative.

Ascribing Meaning to Occupation: An Example From Healthy, Working Mothers.

Ascribing meaning to occupation is a multifaceted process. Understanding this process is illusive, yet fundamental to theory and practice. The objective is to describe the meaning that mothers ascribe to their occupations. A secondary analysis was conducted with data from a convenience sample of 35 Israeli mothers, ages 25 to 45 years. Data were collected using the Occupational Performance History Interview as part of a larger study. Interviews were transcribed verbatim and content analysis applied. Two main categories emerged: the meaning of "giving" (investing values) and the meaning of "receiving" (ensuring needs are met). Values such as responsibility require mothers to do occupations they find less desirable than others associated with the mothering role. The study illustrates how values and needs are intertwined to contribute to the meaning of occupation. Moreover, meaningful occupations can be undesirable but doing them arises from the values that drive mothers to fulfill this role.

Occupational Therapists' Views of Nussbaum's Life Capability: An Exploratory Study.

Life Capability is the first and most fundamental of Nussbaum's 10 Central Human Functional Capabilities (CHFCs). This capability refers to a person having a quality life of normal duration. The purpose of this study was to explore the views' of occupational therapists about Life Capability, specifically, their perspectives of this capability and its perceived relevance to practice. Semi-structured interviews with 14 occupational therapists in British Columbia, Canada, were conducted and thematically analyzed. Within this Canadian context, three themes emerged regarding occupational therapists' views about Life Capability: basic human right, quality of life, and longevity. Occupational therapists appear to view Life Capability as being consistent with the values of the occupational therapy profession. Nussbaum's other CHFCs warrant study to explore the degree to which the Capabilities Approach could complement existing occupational therapy theories, science, and practice.

Measurement properties of eating behavior self-assessment tools in adult bariatric surgery populations: a systematic review.

The present study aims to identify the range of eating behavior self-assessment tools reported in the adult bariatric surgery literature and evaluate the measurement properties of these tools using pre-established criteria. This systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines. This review revealed the use of 20 distinct tools; however, evidence for measurement properties specific to bariatric surgery populations was limited to only ten of these tools, as reported in 14 papers. Validity varied extensively and there was a widespread lack of information regarding measurement of change over time and patient burden. According to the evaluation criteria, there was adequate support for two tools. Several other tools show potential but would benefit from additional investigation of their measurement properties prior to continued use with bariatric surgery patients.

The multiple sclerosis self-management scale: clinicometric testing.

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. METHODS: Thirty-one individuals with MS who met the inclusion criteria were recruited to complete a series of questionnaires at two time points. At Time 1, participants completed the MSSM and two generic self-management tools-the Partners in Health (PIH-12) and the Health Education Impact Questionnaire (heiQ)-as well as a short questionnaire to capture participants' opinions about the MSSM. At Time 2, approximately 2 weeks after Time 1, participants completed the MSSM again. RESULTS: The available MSSM factors showed moderate to high correlations with both PIH-12 and heiQ and were deemed to have satisfactory test-retest reliability. Face validity pointed to areas of the MSSM that need to be revised in future work. As indicated by the participants, some dimensions of MS self-management are missing in the MSSM and some items such as medication are redundant. CONCLUSIONS: This study provides evidence for the reliability and validity of the MSSM; however, further changes are required for both researchers and clinicians to use the tool meaningfully in practice.