DigiTRAC: Qualitative insights from knowledge users to inform the development of a Digital Toolkit for enhancing resilience among multiple sclerosis caregivers.

BACKGROUND: Resilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a flexible way to access and use evidence-based resources that align with MS caregivers' interests and needs over time. OBJECTIVE: We explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit. METHODS: Twenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis. RESULTS: Participants recommended that a digital toolkit should include content focused on promoting MS caregivers' understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers' ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients' and caregivers' experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users' previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage. CONCLUSION: These findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.

Physical activity together for MS (PAT-MS): Secondary outcomes of a randomized controlled feasibility trial.

BACKGROUND: Care partners provide essential care to those with multiple sclerosis (MS). Dyadic interventions promoting health behaviours have wide-reaching benefits for individuals with MS and their care partners. However, behavioural interventions to promote physical activity in patient-caregiver dyads have yet to be explored in an MS-specific context. This study examined the secondary outcomes of the "Physical Activity Together for Multiple Sclerosis (PAT-MS)" intervention, including dyadic adjustment, caregiving tasks, caregiver quality of life, coping, and MS impact in MS dyads. METHODS: A randomized controlled feasibility trial of the 12-week behavioural PAT-MS intervention. The Dyadic Adjustment Scale, Caregiving Tasks in MS Scale, Caregiver Quality of Life in MS Scale, Coping with MS Caregiving Inventory, and MS Impact Scale measured secondary outcomes of interest. Mixed-model ANOVAs were used to test changes in variables between groups (PAT-MS vs wait-list control) over time. RESULTS: 20 participants, including 10 people with MS (51.4 ± 10.1 years old; median patient-determined disease steps (PDDS) score= 4, IQR= 1.25) and 10 care partners (48.5 ± 12.1 years old) were recruited and randomized. There was no statistically significant effect of the intervention on any of the secondary outcomes (p= 0.67-1.00). However, large effect sizes and condition-by-time interaction effects indicated improvement in dyadic adjustment (d= 1.03, ηp2= 0.45), the criticism-coercion coping subscale (d= -0.93, ηp2= 0.49), and caregiving tasks (d= 1.05, ηp2= 0.52), specifically within psycho-emotional (d= 1.47, ηp2= 0.38) and socio-practical (d= 1.10, ηp2 =0.37) sub-domains of caregiving tasks after the PAT-MS intervention compared to the wait-list condition. CONCLUSION: While this pilot feasibility study was not powered based on the secondary outcomes herein, our findings indicate improvement in dyadic adjustment and emotional and social caregiving tasks, with reduced reliance on criticism-coercion coping in the PAT-MS group compared to controls following the intervention. Findings indicate that PAT-MS may improve dyadic psychosocial well-being of people with moderate-to-severe MS and their care partners, and this should be examined next in a fully-powered study.

Symptom Management Among Multiple Sclerosis Care Partners in Canada.

BACKGROUND: Managing the heterogeneity and unpredictability of multiple sclerosis (MS) symptoms can be difficult for MS care partners. This study aimed to characterize the symptoms managed by MS care partners, recognize relationships between symptom management difficulty and other aspects of the caregiving role, and identify supplemental sources of care-giving support used by care partners. METHODS: A Canadian cohort of MS care partners completed an online survey capturing care-partner characteristics, care-recipient symptoms, care-partner difficulty with managing symptoms, and sources of caregiving assistance. Descriptive analysis, analysis of variance, and χ2 tests were used to compare differences in care-partner characteristics by symptom management difficulty groups, defined as low (<4 symptoms), medium (5-7 symptoms), and high difficulty (>7 symptoms). RESULTS: Care partners to individuals with MS (N = 475) reported a median of 8 symptoms (IQR = 4) experienced by their care-recipients. The most frequent symptoms reported were fatigue (89.1%), weakness (87.2%), and depression (81.9%). Care partners reported a median of 6 (IQR = 5) symptoms being somewhat or very difficult to manage. Balance or mobility impairments (20.3%), depression (14.3%), and vision difficulties (13.1%) were most frequently reported as very difficult to manage. Assisting with activities of daily living (P < .001) and time spent caregiving (P = .035) varied significantly between symptom management difficulty groups. Additional help available was reported by 77.5%, 17.8%, and 41.6% of care partners reporting low, medium, and high symptom management difficulty, respectively (P < .001). CONCLUSIONS: Care partners of individuals with MS report difficulty in managing multiple, variable symptoms and often have no additional help. These findings suggest that MS care partners experience difficulty managing many diverse symptoms and may benefit from additional support.

Mapping Resilience: Structural Equation Modeling of Psychological Resilience in Multiple Sclerosis Care Partners.

BACKGROUND: Care partners are essential supports to individuals with multiple sclerosis (MS). Both negative and positive outcomes associated with the caregiving role have been reported. Psychological resilience may be an important factor influencing the MS caregiving experience, but an MS-specific model of care partner resilience has yet to be established. This study sought to explore an explicit model of MS care partner resilience. METHODS: Cross-sectional data from 471 Canadian MS care partners were collected via an online survey. Confirmatory factor analysis (CFA) and structural equation modeling (SEM) were used to test measures within a hypothesized model of resilience. Resilience was measured using the 25-item Connor-Davidson Resilience Scale. RESULTS: Following CFA, the hypothesized model was simplified due to the poor fit of several variables. The final model yielded a moderate SEM fit (χ2 = 6030.95, P < .01). Being a woman was associated with greater caregiving tasks (ß = 0.53, P < .001) and poorer spiritual health (ß = -0.35, P < .001). Spiritual health, but not caregiving tasks, had a positive impact on both positive (ß = 0.48, P < .01) and negative coping (ß = 0.49, P = .01). Quality of life and resilience did not have relationships with other variables in the model. However, quality of life had a positive, unidirectional influence on resilience (ß = 0.83, P < .01). CONCLUSIONS: Our findings indicate that spiritual health is an important predictor of coping and should be further explored in MS care partners. Quality of life may act as a precursor to resilience within MS care partners. Further research and exploration into MS care partner resilience is warranted to confirm this exploratory model.

Physical Activity Together for Multiple Sclerosis (PAT-MS): A randomized controlled feasibility trial of a dyadic behaviour change intervention.

Background: Many people with advanced multiple sclerosis (MS) and their care-partners do not engage in sufficient physical activity (PA) for health benefits. We developed "Physical Activity Together for MS (PAT-MS)", a 12-week dyadic behavioural intervention, to promote PA among these dyads. Herein, we evaluated the feasibility of PAT-MS before a definitive trial. Methods: A randomized controlled feasibility trial, with 1:1 allocation into the intervention or wait-list control condition. Predefined progression criteria included rates of recruitment, retention, safety, participant satisfaction and adherence. Changes in self-reported and accelerometer-measured PA were assessed at baseline and post-intervention using mixed-factor ANOVAs. Effects sizes were calculated as Cohen's d. Results: The recruitment rate (i.e., 20 participants in 10 months) was not acceptable. However, retention (80%) was acceptable. No serious adverse events were reported. There were high levels of participant satisfaction with the intervention (content (median = 6 out of 7), facilitator (median = 7 out of 7), and delivery (median = 5 out of 7)) and adherence (92% of the group sessions, 83% of the individual support calls, and 80% of the practice activities were completed). There were statistically significant time-by-condition interactions on self-reported PA, steps/day, and %wear time and minutes in sedentary behaviour, and moderate-to-vigorous PA from baseline to post-intervention in people with MS and their family care-partners. Conclusion: PAT-MS appears feasible, safe, and efficacious for PA promotion in MS dyads. We established effect size estimates to power a future definitive trial and identified necessary methodological changes to increase the efficiency of study procedures and improve the quality of the intervention. Trial registration: ClinicalTrials.gov NCT04267185; Registered February 12, 2020, https://clinicaltrials.gov/ct2/show/NCT04267185.

Exploring usability characteristics in computer-based digital health technologies for family caregivers of people with chronic progressive conditions: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to map the literature on how usability is considered during the design and/or evaluation of computer-based digital health technologies for family caregivers of persons with chronic progressive conditions. INTRODUCTION: Computer-based digital health technologies offer convenient alternatives for delivering interventions to caregivers of people with chronic progressive conditions. Usability is a critical component of good practice in developing and implementing health and social care technologies; however, we need to determine whether usability is incorporated in the design and/or evaluation of computer-based digital health technologies for caregivers of people with chronic progressive conditions. Within this context, a broad overview of the existing literature on usability in computer-based digital health technologies is needed. INCLUSION CRITERIA: We will include studies published from 2012 to the present that describe usability characteristics of computer-based digital health technologies targeting adult (≥18 years old) family caregivers of people with chronic progressive conditions, regardless of study design or setting. METHODS: We will use the JBI methodology for scoping reviews. We will conduct searches of MEDLINE (Ovid), PsycINFO (Ovid), CINAHL (EBSCOhost), and Web of Science Core Collection to capture eligible studies. After the results are deduplicated, 2 independent reviewers will assess each study for eligibility and extract data from the included studies. Conflicts will be resolved through discussion or with a third reviewer. Data analysis will use a textual narrative synthesis approach. REVIEW REGISTRATION: Open Science Framework osf.io/w4vk5.

Profiles of resilience in multiple sclerosis family care-partners: A Canadian cross-sectional study.

Background: Psychological resilience may play an important role in protecting multiple sclerosis care-partners from the negative effects of their support role. However, predictors of resilience in this population have yet to be identified. Objectives: To identify characteristics predictive of psychological resilience in multiple sclerosis care-partners as informed by the Ecological Model of Resilience. Methods: Informal multiple sclerosis care-partners (n = 540) completed an online survey. Psychological resilience was measured using the 25-item Connor-Davidson Resilience Scale. Sociodemographic and care-context predictors of resilience were analyzed using hierarchical regression. Results: The mean resilience score was 59.0 (SD = 7.6) out of a possible 100. Sociodemographic variables accounted for 31% of the variance in resilience scores in multiple sclerosis care-partners. When care-context variables were incorporated into the model, 55% of variance was explained (F[7,320] = 26.824, p < 0.001). Each group of variables remained significant in both low disability and high disability models. Social support was the only individual variable that remained significant across all models (p < 0.05). Conclusions: Multiple sclerosis care-partners differ strikingly from other caregiving populations. Both sociodemographic and care-context variables were found to promote or hinder resilience in multiple sclerosis care-partners. Social support, in particular, may be an important target for promoting resilience in multiple sclerosis care-partners and could be leveraged in future initiatives.

A continuum of languishing to flourishing: exploring experiences of psychological resilience in multiple sclerosis family caregivers.

PURPOSE: Resilience research in family caregiving in chronic neurological conditions is growing, but multiple sclerosis (MS) caregivers are noticeably absent from this body of work. MS caregivers represent a unique population due to the disease's early onset, prolonged life expectancy, and heterogeneity. As such, this study aimed to explore MS caregivers' conceptualizations of resilience, examine MS caregivers' experiences of resilience development, and determine which assets and resources influence resilience in this role. METHODS: Twenty-four Canadian MS caregivers were recruited. Semi-structured in-depth interviews were conducted with questions derived from an ecological resilience framework. Data were analysed using reflexive thematic analysis. RESULTS: Themes constructed a cyclical resilience model, beginning with encounters with hardship and extending to thriving adjustment. Subthemes included reports of additive challenges, impactful individual and community resources, and multi-level adaptive pathways. Within this cycle, the achievement of healthy adjustment exerted a positive feedback function and informed future responses to lifelong challenges. CONCLUSIONS: Despite the salience of resilience processes within caregiver testimonies, inadequate resources at societal levels were evident. These findings afford researchers and decision-makers relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies.

Towards conceptual convergence: A systematic review of psychological resilience in family caregivers of persons living with chronic neurological conditions.

BACKGROUND: The demand for family caregiving in persons with chronic neurological conditions (CNCs) is increasing. Psychological resilience may empower and protect caregivers in their role. Thus, a synthesis of resilience evidence within this specific population is warranted. AIM: In this systematic review we aimed to: (1) examine the origins and conceptualizations of resilience; (2) summarize current resilience measurement tools; and (3) synthesize correlates, predictors and outcomes of resilience in family caregivers of persons with CNCs. DESIGN: We sourced English articles published up to July 2020 across five databases using search terms involving CNCs, family caregivers and resilience. RESULTS: A total of 50 studies were retained. Nearly half (44%) of the studies used trait-based resilience definitions, while about one third (36%) used process-based definitions. Twelve different resilience scales were used, revealing mostly moderate to high-resilience levels. Findings confirmed that resilience is related to multiple indicators of healthy functioning (e.g., quality of life, social support, positive coping), as it buffers against negative outcomes of burden and distress. Discordance relating to the interaction between resilience and demographic, sociocultural and environmental factors was apparent. CONCLUSIONS: Incongruity remains with respect to how resilience is defined and assessed, despite consistent definitional concepts of healthy adaptation and equilibrium. The array of implications of resilience for well-being confirms the potential for resilience to be leveraged within caregiver health promotion initiatives via policy and practice. PATIENT OR PUBLIC CONTRIBUTION: The findings may inform future recommendations for researchers and practitioners to develop high-quality resilience-building interventions and programmes to better mobilize and support this vulnerable group.

Redefining patient responsibility for a new era.

In 2014, Ochsner Health System implemented a systemwide initiative to improve financial stability, resulting in a 36 percent increase in preservice and point-of-service collections over the same period the previous year. Highlights of the program include: Executive support for the effort, as well as strong, systemwide support from a cross-functional group of influential stakeholders. Exceptions for medically urgent services to ensure the new approach is aligned with Ochsner's mission and values. Measurement and distribution of key metrics (e.g., deferral rate) by the program's leadership to drive performance improvement, dispel rumors, and ensure broad support from physicians.