International journal of MS care最新文献

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.

Background: Multiple sclerosis (MS) is a chronic, progressive autoimmune inflammatory disorder. Its impact is felt not only by individuals but also by their families; however, little is known about the effect on their parents. This study of a cohort from the United Kingdom aimed to develop a conceptual understanding of the parental role and how it changes over time when an adult son or daughter has MS via firsthand accounts.

Methods: Twelve parents of adults with MS were recruited from a UK hospital providing outpatient services to people with MS and a branch of a national MS charity. A social constructivist grounded theory approach informed audio-recorded semistructured interviews and subsequent data analysis.

Results: In this sample, parents of adults with MS strove to limit the impact of MS on their son or daughter by undertaking practical caring activities and providing emotional support. The developed theoretical model illustrates how, in their efforts to meet this aim, parents experienced competing demands between prioritizing their child's needs and managing the effects on their life, between managing the emotional experience and protecting their child from the burden of their experience, and between an intensified instinct/desire to help while maintaining their child's independence.

Conclusions: Findings indicate that parents may be uniquely affected by their adult son or daughter having MS, advocating for their inclusion in research and clinical interventions addressing family adjustment to MS. Further research is needed to ascertain the generalizability of these findings in comparable samples and to determine the impact of sociodemographic and cultural variables on the observed phenomena.