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.
This study compared public versus private affection-sharing experiences of individuals in mixed-sex ( N = 1018), same-sex ( N = 561), and gender-diverse ( N = 96) relationships. Private affection-sharing was similar across groups, except those in mixed-sex relationships reported somewhat less comfort doing so. Despite having a stronger desire to engage in public affection-sharing, those in same-sex and gender-diverse relationships shared public affection less frequently, were less comfortable doing so, refrained from doing so more often, and experienced much higher levels of vigilance related to public affection-sharing, compared to those in mixed-sex relationships. Heightened PDA-related vigilance may have health consequences, as higher levels were associated with worse psychological and physical well-being in all groups. However, individuals in same-sex relationships showed weaker associations between vigilance and well-being than those in mixed-sex relationships, suggesting possible resilience. Still, engaging in vigilance may take its toll, potentially serving as a mechanism through which minority stress works its effects. When we controlled for PDA-related vigilance, psychological and physical well-being levels in same-sex relationships increased relative to mixed-sex peers.
Background Physical activity (PA) is beneficial for all people; however, people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with advanced disabilities and their care partners. Objective The objective of this study is to determine the feasibility of a dyadic PA intervention for people with advanced MS and their care partners. Methods This study is a randomized controlled feasibility trial of a 12-week intervention, with 1:1 allocation into an immediate intervention condition or delayed control condition. A target of 20 people with MS–care partner dyads will be included. The outcomes will be indicators of process, resources, management, and scientific feasibility. Participant satisfaction with the intervention components will be evaluated using a satisfaction survey. The subjective experience of participation in the study will be explored using semistructured interviews. Results The project is funded by the Consortium of Multiple Sclerosis Centers. This protocol was approved by the Ottawa Hospital Research Ethics Board (20190329-01H) and the University of Ottawa Research Ethics Board (H-09-19-4886). The study protocol was registered with ClinicalTrials.gov in February 2020. The findings of this feasibility trial will be disseminated through presentations at community events to engage the MS population in the interpretation of our results and in the next steps. The results will also be published in peer-reviewed journals and presented to the scientific community at national and international MS conferences. Conclusions The data collected from this feasibility trial will be used to refine the intervention and materials in preparation for a pilot randomized controlled trial. Trial Registration ClinicalTrials.gov NCT04267185; https://clinicaltrials.gov/ct2/show/NCT04267185. International Registered Report Identifier (IRRID) PRR1-10.2196/18410
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.
BACKGROUND Physical activity (PA) is beneficial for all people; however, people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with advanced disabilities and their care partners. OBJECTIVE The objective of this study is to determine the feasibility of a dyadic PA intervention for people with advanced MS and their care partners. METHODS This study is a randomized controlled feasibility trial of a 12-week intervention, with 1:1 allocation into an immediate intervention condition or delayed control condition. A target of 20 people with MS–care partner dyads will be included. The outcomes will be indicators of process, resources, management, and scientific feasibility. Participant satisfaction with the intervention components will be evaluated using a satisfaction survey. The subjective experience of participation in the study will be explored using semistructured interviews. RESULTS The project is funded by the Consortium of Multiple Sclerosis Centers. This protocol was approved by the Ottawa Hospital Research Ethics Board (20190329-01H) and the University of Ottawa Research Ethics Board (H-09-19-4886). The study protocol was registered with ClinicalTrials.gov in February 2020. The findings of this feasibility trial will be disseminated through presentations at community events to engage the MS population in the interpretation of our results and in the next steps. The results will also be published in peer-reviewed journals and presented to the scientific community at national and international MS conferences. CONCLUSIONS The data collected from this feasibility trial will be used to refine the intervention and materials in preparation for a pilot randomized controlled trial. CLINICALTRIAL ClinicalTrials.gov NCT04267185; https://clinicaltrials.gov/ct2/show/NCT04267185. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/18410
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