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.

No abstract

BackgroundPhysical activity (PA) is beneficial for all people, yet people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with the disease who have moderate‐to‐severe disability and their family caregivers. For researchers and clinicians to effectively promote PA among caregiver/care‐recipient dyads with moderate‐to‐severe MS, a comprehensive understanding of the shared PA experiences of these dyads would be beneficial.ObjectiveWe explored shared experiences of caregiver/care‐recipient dyads affected by moderate‐to‐severe MS about PA and directions for intervention.MethodsSix focus groups with 23 people with moderate‐to‐severe MS and 12 family caregivers were conducted. Data were analysed using a constant comparative approach.ResultsThree major themes emerged as follows: (i) PA is a continuum, (ii) cycle of disengagement and (iii) cycle of adjustment. The first theme captured the dyads understanding that PA falls along a continuum ranging from highly structured to unstructured activities. Cycle of disengagement captured the experiences of dyads engaging in little or no PA. These dyads perceived internal and external issues as drivers of the cycle of disengagement, while availability of supportive programmes and services or people helped the dyads to break out of the cycle. When the cycle of disengagement was broken, the dyads described moving towards the cycle of adjustment, where they were able to learn skills and take action to incorporate PA into daily routines.ConclusionThis research highlights the need to adopt an integrative approach that acknowledges the caregiver/care‐recipient dyad with moderate‐to‐severe MS as a focus for PA intervention.

Purpose: People with multiple sclerosis (PwMS) and their family caregivers often react to the impact of the disease as an interdependent dyad. The aim of this exploratory study was to examine interdependence in the physical activity (PA) patterns of dyads affected by moderate to severe MS disability. Method: A total of 15 pairs of PwMS and their family caregivers wore accelerometers for 7 days. By collecting data simultaneously from both partners, we tested interdependence using the dyad as the unit of analysis. Results: PwMS and caregivers averaged 4,091.3 (SD 2,726.3) and 6,160.2 (SD 1,653.0) steps per day, respectively. The mean number of minutes per day of sedentary, light, and moderate to vigorous activity for PwMS was 566.3 (SD 97.7), 167.4 (SD 94.0), and 7.6 (SD 12.4), respectively, and 551.9 (SD 92.4), 199.6 (SD 63.4), and 21.4 (SD 18.2), respectively, for caregivers. Interdependence between dyads for sedentary, light, moderate to vigorous activity, and step count was low and non-significant (rs=0.20, 0.26, 0.13, and –0.27, respectively; p>0.05). Conclusions: Although our findings do not support the interdependence of PA between caregivers and care recipients with MS, they do show that both partners are not engaging in sufficient PA to achieve important health benefits. These findings are important because they indicate that the dyads are likely to benefit from interventions for changing PA behavior.

Introduction: It is important to understand the interactions, processes, and issues that occur within telerehabilitation interventions to inform research and practice. The aim of this study was to identify the difficulties reported and intervention features that were captured as helpful in the notes written by occupational therapists during a telerehabilitation trial. Method: Administrative documentation in the form of 60 subjective, objective, assessment, and plan notes were collected. The trial examined the effectiveness of three teleconference-delivered interventions: physical activity alone, fatigue management with physical activity, and contact-control social support for people with multiple sclerosis. Results: Five themes emerged: desiring change, taking action, experiencing difficulty, infrastructure support, and relief and appreciation. Desiring change captured therapists' observations of clients' desire to manage symptoms and improve participation; it was most apparent at the beginning and supported clients' taking action as the interventions progressed. Therapists identified their own difficulties with group facilitation and time management and clients' difficulties with some intervention materials. Infrastructure support was reported to be helpful in minimizing some of these difficulties. In the end, the therapists expressed relief that the clients appeared to benefit from and appreciate the interventions. Conclusion: This study highlights the need for and importance of providing resources and training to support teleconferencedelivered interventions in clinical practice.

Purpose: To identify the most pressing needs for community resources to support physical activity participation, determinants of perceived need, and barriers to co-participation in physical activity among people with multiple sclerosis who have moderate-to-severe disability and the family caregivers providing assistance to such individuals.Methods: Seventy-eight people with multiple sclerosis and 46 family caregivers participated in this crosssectional survey study, guided by the Concerns Report Methodology. Results:The results show differences between groups in rankings for some need items. However, three need items were prioritized by both people with multiple sclerosis and the family caregivers: 1) information about available resources to support physical activity participation, with needs indexes of 76.6% and 52.3% respectively; 2) programs that support joint participation of people with multiple sclerosis together with their caregivers in physical activity, with needs indexes of 62.0% and 68.9% respectively; and 3) programs that have affordable total cost of participation, with needs indexes of 50.7% and 52.3% respectively. A broad range of factors (i.e., education, living situation, type of community, marital status, employment, and income, as well as comorbidity status) was significantly associated with one or more of these need items. Several modifiable impairment-related, personal and logistical factors were identified by both groups as barriers to co-participation in physical activity. Conclusion:The findings highlight the complexity of developing community resources that target physical activity promotion in multiple sclerosis dyads. Importantly, our findings suggest that resources designed to influence dyadic physical activity participation need to include content that are responsive and tailored to both the needs of the person with multiple sclerosis and the unique needs of the family caregiver. The results also underscore the importance of reinforcing physical activity as a shared behavior and providing information about affordable options for exercising together to the benefit of each individual and the dyad (i.e. partnership). Overall, our findings provide a possible starting point to guide the identification of potential participants that might benefit the most from future intervention development work.3

No abstract

Background: Interest in comorbidities has increased in the past few years, but the effect of comorbidities on outcomes of multiple sclerosis (MS) neurorehabilitation interventions is unclear. The aim of this review was to identify and summarize the existing evidence regarding the effect of comorbidities on outcomes of neurorehabilitation interventions targeting people with MS.