Multiple Sclerosis Caregivers Research Articles

Opportunities in Multiple Sclerosis Care Partner Research: An Interview

INTRODUCTION 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.

Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol.

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. 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. 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. 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.

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

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. 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. 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). 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.

Predicting sense of coherence among caregiving partners of persons with multiple sclerosis.

Within the framework of the Salutogenic Model of Health, this study aimed to investigate sense of coherence among caregiving partners of persons with multiple sclerosis (PwMS), and its relationship with perceived social support and illness beliefs conceived as generalized resistance resources in tension management. In this cross-sectional study, 398 caregiving partners of PwMS (Mage = 44.62; 34.9% women and 65.1% men) filled in questionnaires measuring sense of coherence (Sense of Coherence Scale-13), perceived social support from family, friends and significant others (Multidimensional Scale of Perceived Social Support), and illness beliefs (Revised Illness Perception Questionnaire). Hierarchical linear regression analysis was performed to assess the contribution of perceived support and illness beliefs to sense of coherence, controlling for sociodemographic and clinical variables. Perceived support from family and beliefs concerning illness-related emotional representations, illness coherence, and treatment control emerged as significant predictors of participants' sense of coherence. Higher perceived support from family and stronger beliefs in illness coherence and treatment control were associated with higher sense of coherence, while more negative emotional representations were related to lower sense of coherence values. Findings lend support to the relevance of a salutogenic approach to caregiving in multiple sclerosis. They further suggest the usefulness of interventions that can promote caregivers' sense of coherence and successful coping in life by benefitting from family support, favoring the construction of a coherent illness view, offering comprehensive information and expert guidance on treatment and rehabilitation opportunities, and promoting adaptive management of negative emotions. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Significance of Post-Traumatic Growth and Mental Health for Coping in Multiple Sclerosis Caregivers.

We investigated the influence of post-traumatic growth (PTG) and mental health (MH) on multiple sclerosis (MS) caregivers' uses of coping strategies and identified biopsychosocial predictors of proactive or reactive coping. The Short Form Health Survey (SF-12), General Health Questionnaire (GHQ-28), Post-Traumatic Growth Inventory (PGI-21), Brief COPE Questionnaire (COPE-28), and Multidimensional Scale of Perceived Social Support (MSPSS) were used to evaluate 209 caregivers. Higher PTG was related to greater use of emotional support, positive reframing, religion, active coping, instrumental support, planning, denial, self-distraction, self-blaming, and venting. Better MH was associated with greater use of acceptance, while behavioral disengagement and self-distraction were associated with poorer MH. The PTG dimensions relating to others and new possibilities, SF-12 dimensions of physical and emotional roles as well as partnership, not living with the patient, and significant others' social support were predictors of proactive coping. Reactive coping was positively predicted by the PTG dimension relating to others, depression, vitality, other than partner relation, and physical role, and negatively predicted by mental health level and emotional role. In summary, higher MH was associated with proactive coping strategies, whereas post-traumatic growth was related to the use of a wide range of proactive coping as well as reactive coping strategies.

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

ABSTRACT 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.

Multiple sclerosis Caregiver involvement may improve patient care and treatment

Multiple sclerosis Caregiver involvement may improve patient care and treatment

Effect of aromatherapy massage on fatigue and perceived stress of multiple sclerosis patients

Background: Multiple Sclerosis (MS) is an autoimmune, chronic and complex demyelinating disease of the central nervous system, which destroys myelin and damages axons at different levels. Objective: to measure the effect of aromatherapy massage on fatigue and perceived stress of multiple sclerosis patients Methods: quasi-experimental research design with control and study group, The study was conducted at one of the educational hospitals in Cairo. The study was conducted on 35 MS patients as a study group and 35 as a control group. Results: It revealed that almost half of the control group (48.60%) had severe fatigue and 11.40% of them had mild fatigue but 54.80% of the study group had moderate fatigue as well 17.10% of them had sever fatigue post-intervention. Conclusion: This study highlights that aromatherapy massage decreases stress and fatigue levels among multi sclerosis patients was a highly significant improvement in patients’ fatigue and stress levels among the study group compared with the control group. Recommendation: Further trials are justified to enhance the understanding benefits of aromatherapy massage for MS patients. Educational programs about aromatherapy massage for MS caregivers to decrease their burden and improve the quality of life for MS patients.

Multiple sclerosis caregiving: A systematic scoping review to map current state of knowledge

Unpaid caregivers, typically family and friends, provide significant amounts of support to people with multiple sclerosis (MS). Understanding their experiences, needs and challenges is necessary to ensure that caregivers receive the support that they require to continue in their role. Our aim was to map the current state of knowledge about unpaid caregivers of people with MS and identify gaps in knowledge to guide future research and practice. We used scoping review methodology with three major health-related databases (MEDLINE, CINAHL, APA Psychinfo), searching in September 2019, April and October 2020 and October 2021. We selected peer-reviewed scientific articles reporting on primary studies of unpaid caregivers of people with MS, regardless of topic or research design. We extracted information on study aim, participant characteristics, measures used and key findings to generate major themes and identify knowledge gaps. We identified 108 published studies between 1992 and 2021 that met our criteria. Studies of spousal caregivers were most common. Studies focused primarily on measurement of caregiver burden or other negative consequences of caregiving. Thirteen studies addressed positive consequences of caregiving. Sixteen studies reported actual tasks performed by caregivers and seven reported outcomes of caregiver support interventions. Attention to diversity issues that may influence caregiving experiences and outcomes was rare. Overall, knowledge of MS caregiving is limited, particularly with respect to tasks performed by caregivers that may contribute to negative outcomes, diversity issues and effective approaches to remediate caregiver burden. Without this knowledge, finding ways to better support MS caregivers will be difficult.

The development and use of the European academy of neurology guideline on palliative care in advanced progressive multiple sclerosis

The Clinical Practice Guideline on Palliative Care (PC) of People with Severe Multiple Sclerosis (MS) was a joint initiative of the EAN, EAPC, RIMS, and has been endorsed by ECTRIMS and MSIF. The guideline followed the GRADE methodology, and was devised by a task force of health professionals (HPs) from three disciplines (neurology, PC, and rehabilitation), methodologists, and patient advocates from nine countries. Ten clinical questions were formulated, involving HPs and over 950 MS patients and caregivers from the participating countries.

Informal carers' experiences of caring for someone with Multiple Sclerosis: A photovoice investigation.

This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context. Real-time qualitative design using the photovoice method. Twelve MS carers (aged 30-73years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis. Seven inter-related themes were identified. MS caregiving-related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants' positive experiences that enhanced their QoL. Findings demonstrated the multi-faceted and complex nature of MS caregiver's QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers' QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers.

Are multiple sclerosis patients and their caregivers more anxious and more committed to following the basic preventive measures during the COVID-19 pandemic?

BackgroundThe novel coronavirus of 2019 (COVID-19), a pandemic of the kind not seen for a century, has caused global apprehension and distress. Objectivesto evaluate whether the psychological state and behaviours of multiple sclerosis (MS) patients and their caregivers were different from the non-MS population or not during the pandemic. MethodsA cross-sectional survey was conducted on 115 MS patients, 33 MS caregivers and 129 healthy controls. Depression anxiety stress score-21 (DASS-21) was used for evaluation of their psychological state. ResultsMS patients had significantly higher DASS-21 scores (51.48±29.62) than their caregivers (29.79±27.19) and non-MS population (32.91±23.39) (p = 0.005). Younger patients (r=-0.252, p<0.0001), those with high EDSS scores (r = 0.023, p = 0.013) and those who believed that MS patients are at high risk for COVID-19 infection (p = 0.009) had the highest anxiety scores. There was no difference between the three groups in the level of commitment to staying at home (p = 0.747), wearing facemask (p = 0.164), wearing gloves (0.225), avoiding crowd (p = 0.225) and frequent hand washing (p = 0.570). Anxious patients had more relapses (p = 0.002) and pseudorelapses (p = 0.008). ConclusionIn this cohort, MS patients were more anxious, stressed and depressed during the COVID-19 pandemic than their caregivers and the non-MS population, but they were not more motivated to follow the basic preventive measures against infection.

Caregiver Burden in Multiple Sclerosis: Recent Trends and Future Directions.

Purpose of ReviewIn spite of recent advances in treatment, many people with multiple sclerosis (MS) require ongoing care and support. Informal caregivers can experience burden as a result of their role, with possible implications for quality of life (QOL). We review recent research examining MS caregiver experience to (1) understand current risk factors for caregiver burden and (2) identify possible strategies for increasing carer well-being.Recent FindingsMS caregiver experience is highly variable and can be predicted by a variety of care recipient, caregiver and contextual factors. Burden is not the only characteristic associated with care, with positive consequences also reported. Emerging research suggests a number of ways in which carers can be better supported.SummaryIdentifying and meeting the needs of MS caregivers offers the best way of delivering tailored support. Future research should focus on the development of psychosocial supports, while acknowledging the needs of those caring for different MS patient populations.

Integrating Caregiver Support into Multiple Sclerosis Care

With loss of mobility in Multiple Sclerosis (MS) comes increase in caregiver assistance, burden, stress, and depression. This 6-month feasibility study used a pre-post design to test integration of a validated, behavioral, caregiving intervention into an ongoing MS clinic. Because the program focused on caregivers, there were no additional services provided to the persons living with MS other than usual medical care. Twenty-five MS caregivers received REACH VA (Resources for Enhancing All Caregivers’ Health in the VA), a six-session behavior-focused intervention during two to three months designed to increase caregiver skills in managing their own stress and burden and MS related issues and concerns, with a focus on mobility. Caregivers were assessed at baseline, three, and six months. Caregivers’ expectations of the program were to receive education on MS, caregiving and stress management skills, and support. The major benefits caregivers reported were understanding their loved one’s condition and how to better provide care. At six months, caregivers reported statistically and clinically significant improvements in depressive symptoms and bother with challenging MS behaviors. Persons with MS reported benefit for their caregivers and for themselves; 71% reported that their caregivers had helped them with mobility and function. Study results suggest that the addition of the brief REACH caregiver intervention into an MS clinic would benefit both caregivers and persons with MS. Although the intervention was six sessions over three months, benefit persisted at six months, suggesting durability of effects. This trial is registered with ClinicalTrials.gov NCT02835677.

Assessment of the Burden of Multiple Sclerosis Patients' Caregivers in Saudi Arabia.

IntroductionMultiple sclerosis (MS) is a disease that constitutes a high burden on both patients and caregivers. Although many studies have assessed the burden of MS caregivers worldwide, no such studies have been conducted in Saudi Arabia. In this study, we aim to assess the burden of MS patients' caregivers in Saudi Arabia.MethodsThis cross-sectional study included caregivers of MS patients (for >1 year) who visited the neurology clinic at King Abdulaziz Medical City, Jeddah, Saudi Arabia, between July 2017 and December 2018. The study utilized the Zarit Burden Interview (ZBI) to assess the burden on MS patients' caregivers. In addition, the caregivers' demographic profile and certain information regarding the patient were also collected through an oral interview.ResultsThere were a total of 219 respondents, of which 117 (53.4%) male caregivers. For ZBI, the majority of caregivers reported little or no burden (57.1%), followed by a mild to moderate burden (30.1%), then a moderate to severe burden (10.5%), and only five (2.3%) reported a severe burden.ConclusionOur results showed a limited burden of MS on the life caregivers of MS patients. We stress the importance of assessing the burden in MS patients and caregivers as routine practice with the other important measures such as quality of life and medication compliance. The finding of this study will help in encouraging medical centers to establish more specialized MS clinics that put into consideration the psychological factors, burden of the disease, multidisciplinary approach, and support groups, which are currently few in number.

Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers.

Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Using a quasi-experimental design, outcomes between baseline and 1-year follow-up in persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services were compared. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up were examined using propensity score-weighted difference-in-differences regression analysis. For persons with MS, MSADP use had a significant positive effect on 12-Item Short Form Health Survey physical component scores, although the difference was not clinically meaningful. Use of MSADPs did not have effects on any other outcomes for persons with MS or caregivers. Use of MSADPs did not show a clinically meaningful effect on HRQOL for persons with MS or informal caregivers. The MSADPs do not seem to offer sustained benefits to persons with MS or caregivers, but the possibility of initial short-term benefits cannot be ruled out.

Assessment of the Quality of Life of Multiple Sclerosis Patients' Caregivers in Saudi Arabia

Multiple sclerosis (MS) has been found to impact the quality of life of caregivers. Although many studies have assessed the quality of life of MS caregivers worldwide, no such studies have been conducted in Saudi Arabia. In this study, we aim to assess the quality of life of MS patients' caregivers in Saudi Arabia. This cross-sectional study included caregivers of MS patients (for >1 year) who visited the neurology clinic at King Abdulaziz Medical City, Jeddah, Saudi Arabia between July 2017 and December 2018. The study utilized the Zarit Burden Interview (ZBI) to assess the burden on MS patients' caregiver. In addition, their demographic profile was collected, and certain information regarding the patient was also collected through an oral interview. There were a total of 219 respondents, of which 117 (53.4%) male caregivers. For ZBI, the majority of caregivers reported little or no burden (57.1%), followed by mild to moderate burden (30.1%), then moderate to severe burden (10.5%), and only 5 (2.3%) reported severe burden. Our results showed limited impact of MS on the quality of life of caregivers of MS patients. We stress on the importance of routine assessment of the quality of life in MS patients and caregivers as routine practice with the other important measures. The finding of this study will help in encouraging medical centers to establish more specialized MS clinics that put into consideration the psychological factors.

Marijuana Use by Patients with Multiple Sclerosis.

With social attitudes about marijuana changing and patients sometimes seeking nonmainstream treatment options, the main goal of this study was to investigate the prevalence of, and factors associated with, marijuana use by patients with multiple sclerosis (MS). Adult patients with MS (n = 521) and controls (n = 279) from a study of clinical, neuroimaging, genetic, and environmental factors in MS progression were included. Patients with MS stated whether they had ever used marijuana before MS diagnosis, after MS diagnosis, and in the preceding 3 months as part of an in-person questionnaire. The control group stated whether they had ever used marijuana and in the preceding 3 months. The percentage of patients with MS reporting ever use of marijuana was 39.9%, compared with 32.7% of controls. Marijuana use in the preceding 3 months was significantly more prevalent among patients with MS (9.4%) compared with controls (0.4%) (P < .001). Marijuana use was most prevalent in male patients with MS (P = .004) and in patients with MS who used complementary and alternative medicine (P = .045). Cigarette smoking was associated with marijuana use in patients with MS (P < .001) and controls (P = .001). Increasing age was associated with decreasing prevalence of marijuana use in the patients with MS (P < 0.001). Patients with MS are more likely to report recent marijuana use than are people without MS. Owing to potential adverse effects, marijuana use by patients with MS may warrant vigilance by MS caregivers, given shifting social attitudes and the trend towards legalization of marijuana in the United States.

Measuring burden in caregivers of people with multiple sclerosis: psychometric properties of the CSI questionnaire.

BackgroundUnderstanding caregiver strain may be crucial to determine which interventions are most needed to mitigate the negative impact of caring for people with multiple sclerosis (MS). The Caregiver Strain Index (CSI) is a brief self-assessment tool for measuring the caregivers’ perceived level of burden. Limited information is available on the psychometric performance of the CSI in MS.ObjectiveThe objective of this study was to assess the factor structure and construct validity of the CSI in MS.MethodsA multicenter, cross-sectional study in adults with relapsing-remitting and primary-progressive MS (McDonald 2010 criteria) was conducted. A non-parametric item response theory (IRT) procedure, Mokken analysis, was conducted to assess the dimensional structure of the CSI. A parametric IRT model for dichotomous responses, Rasch model, was conducted to assess item characteristics. Discriminative validity was assessed comparing the distribution of its overall score between people with mild and moderate-severe disability according to the Expanded Disability Status Scale.ResultsA total of 72 MS caregivers were studied. The prevalence of a high level of strain was 23.6% (n=17). Internal reliability was high (Cronbach’s alpha =0.91). According to Mokken analysis, CSI represented a unidimensional construct of caregiver burden although two of the total 13 items (#1 and #13) could not be assigned to any factor by an automatic item selection procedure. Without these items, the scalability moved from a weak (Hi =0.37) to a medium scale (Hi =0.44). However, the item characteristic curve of the Rasch model showed a range of appropriate difficulty and the item and person parameters showed good fit (Andersen likelihood ratio test =18.40, df =11; P-value =0.07; all item values for the infit). The CSI score showed a good discriminative validity between the levels of disability of the care recipient.ConclusionThe CSI questionnaire shows appropriate psychometric characteristics being a useful instrument to assess different aspects of burden in MS caregivers in clinical practice.

Mediational Model of Multiple Sclerosis Impairments, Family Needs, and Caregiver Mental Health in Guadalajara, Mexico.

Individuals with multiple sclerosis (MS), especially those living in Latin America, often require assistance from family caregivers throughout the duration of the disease. Previous research suggests that family caregivers may experience positive and negative outcomes from providing care to individuals with MS, but few studies have examined the unmet needs of individuals providing care to family members with MS and how these unmet needs may mediate the relationship between MS symptoms and caregiver mental health. The current study examined the relationships among MS impairments (functional, neurological, cognitive, behavioral, and emotional), unmet family needs (household, informational, financial, social support, and health), and caregiver mental health (satisfaction with life, anxiety, burden, and depression) in a sample of 81 MS caregivers from Guadalajara, Mexico. A structural equation model demonstrated the mediational effect of unmet family needs on the relationship between MS impairments and caregiver mental health. These findings suggest that intervention research on MS caregivers in Latin America may consider focusing on caregiver mental health problems by addressing unmet family needs and teaching caregivers ways to manage the impairments of the individual with MS.