Fatigue as an Understudied Barrier to Participation in Life Roles.

Fatigue is one of the most burdensome and disabling symptoms in numerous acute and chronic conditions and is associated with reduced participation in all aspects of daily life, for example, parenting, employment, and socialization. Historically, occupational practitioners played key roles in fatigue management by creating and implementing interventions. The American Occupational Therapy Foundation convened a Planning Grant Collective workshop with the goal to develop collaborative research ideas and proposals to advance the understanding and management of fatigue. Participants from occupational therapy and other disciplines, with expertise with fatigue or who were conducting research on fatigue, participated in a 3-day virtual workshop. Four main topics emerged: implementation science, treatment taxonomy, trial design and comparative effectiveness, and phenotyping. This white paper describes the proceedings, summarizes the discussions, and outlines recommendations from the PGC workshop on fatigue.

A process evaluation of an on-line fall prevention and management program for individuals who use wheelchairs or scooters living with multiple sclerosis.

Background: Falls and resulting injury are a significant concern for individuals living with multiple sclerosis (MS) that use a wheelchair and/or scooter to support mobility. Effective fall prevention efforts are vital to support the health, wellbeing, and participation for these individuals. Aims: This study reports the findings from the process evaluation conducted in association with a pilot study evaluating the efficacy of Individualized Reduction of FaLLs-Online (iROLL-O), an online, group fall prevention, and management program specifically designed for community-based people living with multiple sclerosis (pwMS) who are full-time wheelchair or scooter users. Methods: A mixed-methods process evaluation was conducted, with specific attention to the impact of online delivery on intervention implementation, participant satisfaction, and mechanisms of change (MOC). Multiple data sources were utilized, including post-session and post-intervention participant and trainer feedback forms and participant qualitative interview data. Descriptive analysis was conducted using Microsoft Excel. Close-ended questions were analyzed by examining five-point Likert scale responses. Qualitative interview data was explored using thematic analysis. Results: Twelve participants and three trainers (one occupational therapist and two physical therapists) contributed to the study. Online delivery did not compromise session fidelity, which averaged 95%. No significant adaptations to the intervention were made during delivery. Participant satisfaction was high at 4.6/5.0. Post-course Trainer Feedback Forms indicate trainer satisfaction with the group dynamic, ability to address unique group needs, and program content. Reach improved with online delivery as transportation barriers were removed and recruitment from a broader geographic area was enabled. Three themes reflecting key MOC emerged from the analysis: group context, motivation for participant engagement, and the multifaceted nature of the program. The COVID-19 pandemic was identified as a contextual factor impacting community participation. Both participants and trainers identified the group dynamic as a strength. The trainers valued the program's flexibility in allowing them to address individual and/or group-specific fall prevention needs. Conclusion: Feedback from key stakeholders was essential to a meaningful process evaluation. Online delivery supported program implementation, including reach, and resulted in high levels of satisfaction among participants and trainers. Future iterations should aim to uphold the positive group context, recruit, and train skilled interventionists who are licensed as occupational or physical therapists and continue to provide the program's diverse approach to fall prevention and management.

Process evaluation findings of a fall prevention and management program for wheelchair and scooter users with multiple sclerosis.

Objective: To describe process evaluation findings of a clinical trial to evaluate the Individualized Reduction of Falls (iROLL) program, a 6-session, group-based intervention designed to reduce fall incidence among people living with multiple sclerosis (MS) who use a wheelchair or scooter full-time. Methods: A mixed-methods process evaluation focusing on implementation and mechanisms of impact (MOI) was conducted. Both iROLL participants and trainers (licensed occupational or physical therapists) provided input. Results: Seventeen iROLL participants and nine trainers participated. The overall session attendance rate was 93%. Content and logistics fidelity were 95% and 90%, respectively and average overall participant satisfaction rating was 4.7/5.0. Five MOI themes emerged: group dynamic, comprehensive nature of the program, strong program development, role of a skilled interventionist, and motivated participants. Recruitment challenged program reach. Conclusion: iROLL is acceptable to the target audience, can be delivered with high fidelity and has diverse and interacting mechanisms of impact operating. Remote delivery may improve reach. Innovation: Effective iROLL delivery requires trainers with strong group management skills who can also individualize material while maintaining program fidelity. Comprehensive training and on-going support of the occupational and physical therapists delivering iROLL bolsters program effectiveness. Program access may improve with online delivery.

Validation of an individualized reduction of falls intervention program among wheelchair and scooter users with multiple sclerosis.

INTRODUCTION: Falls are a serious concern for wheelchair and scooter users with multiple sclerosis (MS). Approximately, 75% of the population reports at least one fall in a 6-month period and nearly half report frequent falls. Falls can result in physical injuries and contribute to activity curtailment. Despite the negative consequences, limited evidenced-based fall prevention programs designed specifically for wheelchair and scooter users with MS exist. PURPOSE: Recognizing the threat falls pose to health and well-being and the dearth of fall prevention programs, the purpose of this study is to perform a structured process evaluation and examine the feasibility and efficacy of a community-based intervention specifically designed to reduce fall incidence among wheelchair and scooter users with MS. Secondary aims of the intervention are to improve functional mobility skills associated with fall risk (e.g., transfer and wheelchair skills, balance), increase knowledge of fall risk factors, decrease fear of falling, and enhance quality of life and community participation. METHODS: To evaluate our specific aims, a clinical trial will be performed with 160 wheelchair and scooter users with MS. (ClinicalTrials.gov Identifier: NCT03705364). Participants will be recruited to participate in a small group-style community-based program. The content of the program will be based on factors found to be associated with falls among wheelchair and scooter users with MS. These factors include but are not limited to, wheelchair/scooter related characteristics, transfer activities, impaired seated balance, and environmental factors. A physical or occupational therapist, will implement the intervention, which is comprised of 6 sessions that occur once weekly. The incidence of falls, along with an examination of wheelchair/scooter and transfer skills, seated postural control and knowledge of fall related risk factors will be compared between intervention and control participants, with assessment periods occurring prior to the intervention, 1 to 2 weeks after completion of the 6-week intervention session, and 12 weeks after the intervention period is complete. CONCLUSION: Results from this study will guide the refinement of the intervention program and inform future research among a large and diverse group of wheelchair and scooter users living with MS.

Ethical decision making in clinical research: application of CELIBATE.

The need for high-quality evidence to support practice is an ongoing issue in occupational therapy. As a consequence, growing numbers of occupational therapists are engaged in both clinical practice and research activities. Therapists who find themselves in these dual roles are sometimes faced with ethical conflicts when the responsibilities of being a researcher appear, on the surface, to diverge with the responsibilities of being an occupational therapist. This article applies one clinical tool, CELIBATE, to problem solve through an ethical dilemma experienced by a clinician involved in research. Based on the experience of using the tool, recommendations are presented to make CELIBATE more useful in research situations.

Employment needs of people with multiple sclerosis: a review of current literature and application to occupational therapy practice.

Individuals with multiple sclerosis (MS) are often diagnosed during a period of life when career exploration and development occurs. The purpose of this paper is to examine the literature that has been published from 1996 to 2004 about the employment needs of people with MS in order to build upon Rumrill's (1996a) text and develop a set of treatment priorities for occupational therapists working with this population. The current literature highlights the potential employment challenges and incentives, programmatic barriers, and challenges specific to women with MS. The literature also highlights the changing meaning of work, the importance of coping with these changes, and the scope of needed intervention. Outlined are occupational therapy treatment priorities for people with MS in the performance area of work.

Aging with multiple sclerosis.

Although multiple sclerosis (MS) does not typically reduce life expectancy, there has been relatively little systematic investigation of the experiences and health-related concerns of people aging with this disease. A current search of the database CINAHL produced no articles when the search terms "multiple sclerosis," "nursing" and "aging" were used. To initiate more dialogue about the role of nurses in addressing the issues and concerns of people aging with MS, a cross-sectional descriptive study was conducted using both qualitative interviews and the administration of standardized instruments to elicit information about the health concerns and service needs of 27 people with MS 55 years of age and older. Qualitatively, participants perceived that they had less freedom and required more assistance than same age peers who do not have MS. Scores from standardized instruments support these perceptions. Participants expressed unmet needs in the areas of housework, physical therapy, MS support groups, religious service attendance, information and referral, check-in services, assistive technology use, social activities, personal care, and care coordination. To address these perceptions and needs, neuroscience nurses need to be aware of and sensitive to the challenges of aging with MS. In addition, nurses must be prepared to discuss and provide information, resources, and referrals on a wide range of health, social, and wellness-related services.

Experiencing the loss of mobility: perspectives of older adults with MS.

PURPOSE: The purpose of this study was to develop an understanding the experience and meaning of mobility loss among older adults with multiple sclerosis (MS). This work is part of a larger study on the health concerns and service needs of older adults with MS. METHODS: Twenty-seven people with MS (mean age = 62 years, range = 55-82) were interviewed using a phenomenological approach. RESULTS: Thematic analysis found that three factors contributed to participants' experience of mobility as a person with MS: reality of having MS, mobility needs, and contextual factors. Participants discussed how the reality of MS meant variability in their ability to get around and the importance of trying to remain in control over their mobility experiences. The experience of mobility lead participants to mourn losses, take action, and contemplate their futures. They expressed concerns about the continual declines in their mobility, losing independence, becoming a burden on caregivers, and the potential for having to move into a nursing home. CONCLUSIONS: Findings provide insight into the experience of mobility loss among older adults with MS, and point to potential strategies that can be used to help people cope with and adapt to these losses.