International journal of MS care最新文献

Background: Caregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well.

Methods: We assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors.

Results: The caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed.

Conclusions: The process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.

Background: Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS.

Methods: From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention.

Results: A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (P = .037) and the stress subscale score (P = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores.

Conclusions: Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.

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.

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 (β = 0.53, P < .001) and poorer spiritual health (β = -0.35, P < .001). Spiritual health, but not caregiving tasks, had a positive impact on both positive (β = 0.48, P < .01) and negative coping (β = 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 (β = 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.

Guest editor Marcia Finlayson, PhD, OT Reg (Ont), OTR, is a professor in the School of Rehabilitation Therapy at Queen's University in Ontario, Canada. She began her career as a clinical occupational therapist and shifted to a research career focused on generating and sharing knowledge to help people affected by multiple sclerosis (MS) lead healthy, meaningful lives with control over their participation in daily activities, at home and in the community, particularly as they age. For this special issue on caregiving in MS, she chose to interview Kenneth Pakenham, PhD, emeritus professor of clinical and health psychology at the University of Queensland in Brisbane, Australia. For more than 4 decades, he has investigated the psychological well-being welle-eing of caregivers, including coping mechanisms and innovative interventions to improve their quality of life. His work is dedicated to applying positive health frameworks to chronic illnesses and to empowering caregivers and individuals with MS. Together, their expertise illuminates the multifaceted challenges and opportunities in MS caregiving research and understanding.

Background: Caregivers of individuals with multiple sclerosis (MS) are key members of the treatment team. Their needs and challenges should be met as interventions can be effective in improving not only their own health, well-being, and quality of life but also that of those they care for. The aim of this systematic review was to investigate supportive interventions for caregivers of individuals with MS.

Methods: We conducted a database search of PubMed, Google Scholar, Science Direct, Scopus, and the Cochrane Library from 2000 to 2021. English-language studies that examined interventions administered directly to caregivers of individuals with MS and evaluated various outcomes were included. The Downs and Black checklist was used to assess the methodological quality of included studies.

Results: Twenty of 367 relevant papers fit the eligibility criteria outlined in the methods of this study and were subsequently selected for this review. Of the included studies, there was a notable variance in key characteristics such as methods, outcome measures, sample size, and procedures. Supportive interventions, psychoeducational group interventions, and behavioral-adaptive therapies were the 3 main categories of interventions reviewed; however, each study had a significant correlation between the intervention and outcomes.

Conclusions: Despite the small sample size in this study, this review showed that various intervention models that target caregivers of individuals with MS have been successful.