Moral distress experienced by community service providers of home health and social care in Ontario, Canada.

Moral distress occurs when one knows a morally correct action to take but feels powerless to act the way one believes is right. Moral distress has been studied in many contexts but there remains a gap in our understanding of the phenomenon as it manifests outside of hospital-based settings. The aim of this study was to explore the nature of the moral distress experience among community-based health and social care professionals working with older adults and their caregivers. Using a qualitative constructionist design, we interviewed 24 participants from a single health authority in southwestern Ontario, Canada. Participants were both urban and rurally based. Data were collected in the winter and summer of 2020 and analysed using Braun and Clarke's thematic analysis strategy. Three factors: reluctant clients, human resource shortages and system challenges, contributed to the creation of perceived morally precarious care plans, resulting in symptoms of moral distress. Study participants described frustration, guilt, anger, and grief at not being able to act consistently with their core values and provide the amount and/or quality of care their clients and unpaid caregivers deserved. We consider possible reasons for our finding that community service providers did not always respond to the consequences of moral distress symptoms in a manner similar to those in acute care contexts. Our findings suggest that study participants may have been able to cultivate moral resilience in the face of moral distress through the positive reframing of adversity and therefore maintain their overall sense of moral integrity.

Adherence in Youth With Multiple Sclerosis: A Qualitative Assessment of Habit Formation, Barriers, and Facilitators.

Rates of medication nonadherence in youth with multiple sclerosis (MS) range from 10% to 60%. Qualitative studies of adherence can provide insight into children's own perspectives about barriers and facilitators to their adherence and inform future interventions. This qualitative longitudinal descriptive study included children with MS ( n = 28) participating in a randomized controlled trial focused on medication adherence ( clinicaltrials.gov : NCT02234713). Following established methods, three independent reviewers coded transcripts of motivational interviewing (MI) sessions (three interviews per subject, performed monthly over a 3-month period) for relevant themes. They were subsequently categorized using inductive content analysis. Youth described medication adherence as being dependent on the ability to build and maintain healthy habits related to medication use, including embodiment of these habits. Barriers and facilitators included remembering/forgetting, experiences with fatigue, and experiences with medication. These themes were maintained through the second and third interviews. Future research focus on barriers and facilitators to habit maintenance in this population.

The Experience of Persons With Multiple Sclerosis Using MS INFoRm: An Interactive Fatigue Management Resource.

We aimed to understand participants' experiences with a self-guided fatigue management resource, Multiple Sclerosis: An Interactive Fatigue Management Resource ( MS INFoRm), and the extent to which they found its contents relevant and useful to their daily lives. We recruited 35 persons with MS experiencing mild to moderate fatigue, provided them with MS INFoRm, and then conducted semistructured interviews 3 weeks and 3 months after they received the resource. Interpretive description guided the analysis process. Findings indicate that participants' experience of using MS INFoRm could be understood as a process of change, influenced by their initial reactions to the resource. They reported experiencing a shift in knowledge, expectations, and behaviors with respect to fatigue self-management. These shifts led to multiple positive outcomes, including increased levels of self-confidence and improved quality of life. These findings suggest that MS INFoRm may have a place in the continuum of fatigue management interventions for people with MS.

Lower physical activity is associated with higher disease burden in pediatric multiple sclerosis.

OBJECTIVE: To evaluate the association between physical activity (PA) and multiple sclerosis (MS) disease activity, depression, and fatigue in a cohort of children with MS and monophasic acquired demyelinating syndrome (mono-ADS). METHODS: In this cross-sectional study of consecutive patients attending a specialized pediatric MS clinic, we administered the PedsQL Multidimensional Fatigue Scale, Center for Epidemiological Studies Depression Scale, and Godin Leisure-Time Exercise Questionnaire. Quantitative MRI analysis was performed to obtain whole brain and T2 lesion volume in a subset of participants (n = 60). RESULTS: A total of 110 patients (79 mono-ADS; 31 MS; 5-18 years; M:F 1:1.2) were included. Patients with MS reported less strenuous (33.21 ± 31.88 metabolic equivalents [METs] vs 15.97 ± 22.73 METs, p = 0.002) and total (44.48 ± 39.35 METs vs 67.28 ± 59.65 METs; p = 0.0291) PA than those with mono-ADS. Patients with MS who reported greater amounts of moderate PA METs had fewer sleep/rest fatigue symptoms (r = -0.4). Participation in strenuous PA was associated with smaller T2 lesion volumes (r = -0.66) and lower annualized relapse rate (r = -0.66). No associations were found between total brain volume and participation in PA. CONCLUSIONS: Children with MS are less physically active than children with mono-ADS. Reasons for this are unclear, but may be related to ongoing disease activity, perceived limitations, or symptoms such as depression or fatigue. Children with MS reporting higher levels of strenuous PA had lower T2 lesion volumes and lower relapse rates, suggesting a potential protective effect of strenuous PA in this population. Further longitudinal studies are needed to establish the relationship of PA to MS symptoms and disease activity in this population.

Correlates of participation in meaningful activities among people with multiple sclerosis.

OBJECTIVE: To explore the associations between impairments, self-management self-efficacy, self-management behaviors, and environmental factors and their role in predicting participation in meaningful activities among people with multiple sclerosis. DESIGN: Online cross-sectional survey. SUBJECTS/PATIENTS: Randomly selected individuals (n = 335) from a large multiple sclerosis patient registry. METHODS: Participation in activities that are meaningful to the individual was measured with Community Participation Indicators (CPI), the dependent variable. Independent variables included symptom severity, activities of daily living limitations, cognitive problems, stages of change for physical activity, nutritional behaviors, self-efficacy, and environmental barriers. A backwards selection regression analysis was used to compare the relative contributions of independent variables in predicting the CPI. A path analysis was conducted to explore the associations between independent variables and their direct and indirect effects on the CPI. RESULTS: The final regression model included self-management self-efficacy (ß = 0.12), environmental barriers (ß = -0.16), cognitive problems (ß = -0.22), and stages of change for physical activity (ß = 0.12). Path analysis indicated that impairments and environmental barriers might negatively influence self-management self-efficacy. Self-management self-efficacy might have indirect effects on the CPI via engagement in self-management behaviors. CONCLUSION: Future research should explore whether interventions that promote self-management self-efficacy can facilitate participation in meaningful activities.

Assessment of upper extremity function in multiple sclerosis: review and opinion.

Upper extremity (UE) dysfunction may be present in up to ~80% of individuals with multiple sclerosis (MS), although its importance may be under-recognized relative to walking impairment, which is the hallmark symptom of MS. Upper extremity dysfunction affects independence and can impact the ability to use walking aids. Under-recognition of UE dysfunction may result in part from limited availability of performance-based and patient self-report measures that are validated for use in MS and that can be readily incorporated into clinical practice for screening and regularly scheduled assessments. In addition to the 9-Hole Peg Test, which is part of the Multiple Sclerosis Functional Composite, there are several performance-based measures that are generally used in the rehabilitation setting. These measures include the Box and Block Test, the Action Research Arm Test, the Test d'Evaluation de la performance des Membres Supérieurs des Personnes Agées, and the Jebsen-Taylor Test of Hand Function. Several of these measures were developed for use in stroke, although in contrast to stroke, which is characterized by unilateral dysfunction, UE impairment in MS is generally bilateral, and should be assessed as such. Similarly, patient-reported UE measures are available, including Disabilities of the Arm, Shoulder, and Hand (DASH) and its shorter version, QuickDASH, the Manual Ability Measure, and ABILHAND, although none has been psychometrically validated for MS. Recently, item response theory was used to develop a Neuro-QOL (Quality of Life) UE measure and a Patient-Reported Outcomes Measurement Information System UE measure; neither of these have demonstrated sensitivity to change, limiting their use for longitudinal assessment. Consequently, although work is still needed to develop and validate performance-based and patient-reported measures of UE function that are suitable for use in daily MS clinical practice, currently available UE measures can be recommended for incorporation into MS management, albeit with an understanding of their limitations.

Performance measures rather than self-report measures of functional status predict home care use in community-dwelling older adults.

BACKGROUND: Occupational therapists frequently assess functional status (FS) to determine the home care (HC) service requirements of older adults. However, it is unclear which type of FS measure is most effective for this purpose. PURPOSE: This study investigated the predictive ability of three measures of FS (a self-report measure of usual behaviour, a self-report measure of capacity, and an observational performance measure-the Performance Assessment of Self-Care Skills [PASS]) on formal HC utilization. METHOD: A secondary analysis of 2001 Aging in Manitoba Longitudinal Study (AIM) data was conducted. FINDINGS: The odds of receiving HC within the 30-month follow-up period were 1.32 times (or 30%) higher for each increase in the number of dependent tasks based upon a standardized performance measure. The self-report measures did not predict HC utilization. IMPLICATIONS: This study suggests that standardized performance measures-in particular, the PASS-are more predictive of formal HC use in community-dwelling older adults than self-report measures.

A profile of support group use and need among middle-aged and older adults with multiple sclerosis.

This study compared middle-aged and older adults with multiple sclerosis (MS, N = 1,275) according to their use of support groups and identified factors associated with perceived need. Over 64.6% (n = 824) of participants had attended a MS support group meeting at least once. Individuals who had never attended a group were more likely to reside in urban or suburban communities, report lower symptom interference, and fewer activity limitations. Women, individuals without a helper, and people with greater symptom interference were more likely to perceive a need for a support group. Findings raise questions for professionals involved in developing and implementing multiple sclerosis support groups.

Use of physical therapy services among middle-aged and older adults with multiple sclerosis.

BACKGROUND: There is limited understanding of the utilization of and perceived need for physical therapy services among middle-aged and older adults with multiple sclerosis (MS). The resulting knowledge gap compromises efforts for physical therapy service planning for this population. OBJECTIVE: The purpose of this study was to examine the use of and need for physical therapy services in a sample of adults with MS living in the Midwestern United States. DESIGN: This was a cross-sectional, descriptive study. METHODS: Data from telephone interviews with 1,065 people with MS, aged 45 to 90 years, were used for the study. A multinomial regression model was used to determine factors associated with use of physical therapy services (never, within the past year, more than a year ago). Logistic regression analysis examined factors associated with unmet needs for these services. RESULTS: Thirty-six percent of the sample reported never using physical therapy services, 33% reported using physical therapy services within the past year, and 31% reported using physical therapy services more than a year prior to the interview. Factors associated with recent use of physical therapy services included living in an urban or suburban community, deteriorating MS status, experiencing problems with spasticity (ie, hypertonicity), having difficulty moving inside the house, being hospitalized in the past 6 months, and seeing a family physician. These same factors were associated with unmet needs. Limitations Physical therapy service use was self-reported. Data were collected in 5 Midwestern states from people 45 years of age or older, which may limit generalizability. CONCLUSIONS: Factors associated with use of and need for physical therapy services reflect issues of access (geographical, referrals), MS status, and mobility difficulties.

Development of an educational programme for caregivers of people aging with multiple sclerosis.

This article describes a three-phase project to identify and develop an occupational therapy response to the challenges experienced by caregivers of middle-aged and older adults with multiple sclerosis (MS). In Phase 1 302 caregivers of middle-aged and older adults with MS were interviewed by telephone to identify the care-giving challenges they experienced. A total of eight challenges were identified, with the four most prevalent ones including finding and using formal support services, managing the emotional aspects of caregiving, doing the physical aspects of care-giving and dealing with informal supports. In Phase 2 a comprehensive literature review was conducted to identify existing caregiver education programmes that could be used to address these challenges. None of the 21 programmes that were located addressed all of the challenges identified through the Phase 1 interviews. In response, a new five-session psycho-educational group programme entitled 'Meeting the Challenges of MS' was developed in Phase 3. The programme was empirically grounded in Phase 1 findings, and drew on theory to guide group process and sequencing. The findings from Phases 1 and 2 and the resulting programme cannot be generalized to caregivers of younger adults with MS, although the steps taken to develop this programme have the potential for replication with other populations served by occupational therapists.