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Afrasiabifar, Ardashir, Zahra Mehri, and Hamid Reza Ghaffarian Shirazi. "Orem’s Self-Care Model with Multiple Sclerosis Patients’ Balance and Motor Function." Nursing Science Quarterly 33, no. 1 (December 3, 2019): 46–54. http://dx.doi.org/10.1177/0894318419881792.
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Orem’s self-care model has been introduced as a nursing model to empower participants with chronic diseases. This study aims to investigate the effectiveness of nursing interventions using Orem’s self-care model with multiple sclerosis participants’ balance and motor function. Sixty-three participants with multiple sclerosis were randomly assigned to intervention and control groups. The nursing intervention using Orem’s self-care model was performed for eight sessions of 45–60 minutes in the intervention group. In the intervention group, a significant increase (improvement) was observed in the mean scores of balance before (17.09 ± 1.97) and after the intervention (33.75 ± 6.01). A significant decrease (improvement) was observed in the mean of motor functions before (4.12 ± 0.34) and after the intervention (1.59 ± 0.71) ( p = 0.001). However, no significant difference existed in the mean scores of balance ( p = 0.10) and motor function in the control group ( p = 0.20). The nursing intervention using Orem’s self-care model improved balance and motor function of participants with multiple sclerosis.
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GULICK, ELSIE E. "Parsimony and Model Confirmation Of the ADL Self-Care Scale For Multiple Sclerosis Persons." Nursing Research 36, no. 5 (September 1987): 278???283. http://dx.doi.org/10.1097/00006199-198709000-00008.
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Halpern, Michael T., Heather Kane, Stephanie Teixeira-Poit, Corey Ford, Barbara Giesser, June Halper, Shana Johnson, Nicholas G. LaRocca, Aaron Miller, and Steven P. Ringel. "Projecting the Adequacy of the Multiple Sclerosis Neurologist Workforce." International Journal of MS Care 20, no. 1 (January 1, 2018): 35–43. http://dx.doi.org/10.7224/1537-2073.2016-044.
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Abstract Background: Anecdotal reports suggest shortages among neurologists who provide multiple sclerosis (MS) patient care. However, little information is available regarding the current and future supply of and demand for this neurologist workforce. Methods: We used information from neurologist and neurology resident surveys, professional organizations, and previously reported studies to develop a model assessing the projected supply and demand (ie, expected physician visits) of neurologists providing MS patient care. Model projections extended through 2035. Results: The capacity for MS patient visits among the overall neurologist workforce is projected to increase by approximately 1% by 2025 and by 12% by 2035. However, the number of individuals with MS may increase at a greater rate, potentially resulting in decreased access to timely and high-quality care for this patient population. Shortages in the MS neurologist workforce may be particularly acute in small cities and rural areas. Based on model sensitivity analyses, potential strategies to substantially increase the capacity for MS physicians include increasing the number of patients with MS seen per neurologist, offering incentives to decrease neurologist retirement rates, and increasing the number of MS fellowship program positions. Conclusions: The neurologist workforce may be adequate for providing MS care currently, but shortages are projected over the next 2 decades. To help ensure access to needed care and support optimal outcomes among individuals with MS, policies and strategies to enhance the MS neurologist workforce must be explored now.
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Schultz, Timothy J., Anne Thomas, Paul Georgiou, Lynette Cusack, Mahasen Juaton, Lorraine Simon, Kerisha Naidoo, Kevin Webb, Jonathan Karnon, and Janakan Ravindran. "Developing a Model of Care for Home Infusions of Natalizumab for People With Multiple Sclerosis." Journal of Infusion Nursing 42, no. 6 (2019): 289–96. http://dx.doi.org/10.1097/nan.0000000000000343.
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Asano, Miho, Rebecca Raszewski, and Marcia Finlayson. "Rehabilitation Interventions for the Management of Multiple Sclerosis Relapse." International Journal of MS Care 16, no. 2 (July 1, 2014): 99–104. http://dx.doi.org/10.7224/1537-2073.2013-031.
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Background: This review was undertaken to identify and summarize the existing evidence regarding postrelapse rehabilitation interventions in people with multiple sclerosis (MS). Methods: Literature searches were conducted within the following databases: CINAHL Plus with Full Text, MEDLINE via Ovid, and PsycINFO via CSA Illumina. The following terms were searched as subject headings or keywords: choice behavior, counseling, decision making, disease management, health education, health promotion, patient education, patient participation, patient satisfaction, psychotherapy, rehabilitation, self-care, self-management. Then these searches were combined with the subject headings for relapsing-remitting multiple sclerosis and subject heading or keywords for recurrence/relapse. Through the initial database search and additional citation search, 260 potentially relevant citations were identified. After screening the titles and abstracts as well as the citation search results, the reviewers agreed to keep five studies for the full-text reviews. Three rehabilitation intervention studies were included in the final review. Results: A combined total of 145 adults who experienced a relapse within the previous 5 months received 3 to 18 days of rehabilitation. All three studies suggested the benefit of multidisciplinary rehabilitation for individuals with MS to improve impairment or disability. Conclusions: The three multidisciplinary rehabilitation interventions included in this review appear to be effective in improving impairment or disability of people with MS who experienced a relapse. Given the limited number of studies and their methodological limitations, the results must be interpreted cautiously. Further investigation is needed to better understand the rehabilitation needs of people with MS after relapse in order to improve research and care.
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Leary, Alison, Debbie Quinn, and Amy Bowen. "Impact of Proactive Case Management by Multiple Sclerosis Specialist Nurses on Use of Unscheduled Care and Emergency Presentation in Multiple Sclerosis." International Journal of MS Care 17, no. 4 (July 1, 2015): 159–63. http://dx.doi.org/10.7224/1537-2073.2014-011.
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Background: Multiple sclerosis (MS) affects approximately 100,000 people in the United Kingdom, with rising emergency admissions to the hospital. The multiple sclerosis specialist nurse plays a pivotal role in managing MS care in the United Kingdom, and there is anecdotal evidence that this role can help avoid emergency presentations and unnecessary hospital admissions. Methods: A retrospective service evaluation took place in one established MS nursing service. The impact of the introduction of proactive nurse-led management and a rapid response service on rates of emergency presentation, hospital admission, and bed use was examined. The primary intervention was the introduction of extra nursing hours (6 hours per week) and the reallocation of some routine administrative duties, which allowed the service to move to a proactive management model aimed at avoiding the need for unplanned care. In addition, a care pathway was implemented in the emergency department for patients with MS who did present. Results: Reduction in utilization was from a mean of 2700 bed-days per year (2002–2006) to a mean of 198 bed-days per year (2007–2013). Conclusions: During a 10-year period, moving from reactive management to proactive management demonstrated an increase in complex specialist nursing interventions and led to a decrease in emergency presentation and bed use at the local acute-care center.
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Buchanan, Robert J., and Chunfeng Huang. "Informal Caregivers Assisting People with Multiple Sclerosis." International Journal of MS Care 13, no. 4 (December 1, 2011): 177–87. http://dx.doi.org/10.7224/1537-2073-13.4.177.
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The objective of this study was to identify characteristics of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving this assistance that are associated with the strength of the care-giver/care recipient relationship. Data were collected in a national survey of informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with caregiver perceptions of the strength of the relationship with the person with MS. The overall health of the person with MS was significantly associated with caregiver perceptions that providing assistance strengthened the caregiver/care recipient relationship, with poor health having a negative impact on the relationship. A spousal relationship between the caregiver and the person with MS was associated with significantly lower perceptions of a strengthened relationship. Conversely, caregiver perceptions that MS symptoms interfered with the independence of the person with MS in daily life were associated with caregiver perceptions of a strengthened relationship. Longer duration of caregiving and more hours per week spent providing assistance also were associated with a stronger relationship. In contrast, we found a significant negative association between caregiver perceptions that assisting the person with MS was burdensome and the strength of the relationship. Similarly, higher levels of education among caregivers tended to have a significantly negative impact on the caregiver/care recipient relationship. Our findings highlight the importance of addressing the needs and concerns of spousal caregivers. Health professionals who treat informal caregivers, as well as those treating people with MS, should be sensitive to the impact caregiving has on caregivers, especially spouses providing assistance.
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Heinz, Amy, and Jennie Antolak. "Group Coaching for Individuals with Multiple Sclerosis." International Journal of MS Care 12, no. 2 (January 1, 2010): 59–64. http://dx.doi.org/10.7224/1537-2073-12.2.59.
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The physical, emotional, and mental changes associated with multiple sclerosis (MS) can disrupt patients' lives on many levels and interfere with their pursuit of life goals. Health-care practitioners usually work with people with MS in traditional medical settings—for example, upon initial diagnosis of MS or after an exacerbation of symptoms. Because of the nature of such settings and the current state of health care, it is challenging to provide the ongoing support and guidance that patients need to work toward life goals that were in place before the onset of their illness. Coaching is a talk-based process that uses tools and techniques designed to help individuals make progress toward their life goals. Coaching in a group format is an emerging method for guiding people with similar situations or needs toward their goals. The pilot group coaching project described here provides initial evidence that group coaching may be a valuable service-delivery model for expanding possibilities for individuals with MS living in the community.
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Ahmadi, Zakieh, and Tabandeh Sadeghi. "Application of the Betty Neuman systems model in the nursing care of patients/clients with multiple sclerosis." Multiple Sclerosis Journal – Experimental, Translational and Clinical 3, no. 3 (August 18, 2017): 205521731772679. http://dx.doi.org/10.1177/2055217317726798.
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Johnson, Kurt L., Deborah Hertz, Gary Stobbe, Kevin Alschuler, Rosalind Kalb, Katharine S. Alexander, George H. Kraft, and John D. Scott. "Project Extension for Community Healthcare Outcomes (ECHO) in Multiple Sclerosis." International Journal of MS Care 19, no. 6 (November 1, 2017): 283–89. http://dx.doi.org/10.7224/1537-2073.2016-099.
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Background: A pilot program using the Project Extension for Community Healthcare Outcomes (ECHO) model was conducted for multiple sclerosis (MS) clinicians in the Pacific Northwest. The pilot was a collaboration between the National Multiple Sclerosis Society and faculty at the University of Washington. The goal was to determine the feasibility of using this telehealth model to increase the capacity and capability of clinicians in rural areas to treat people with MS. Methods: Thirteen practice sites with 24 clinicians were recruited to participate. Videoconferencing was used to conduct weekly sessions consisting of brief didactics followed by case consultations. Results: Most participants completing the outcome survey (10 of 15) indicated that they were more confident in treating patients with MS. They were satisfied with the training, felt better able to care for their patients, and had made changes in their treatment based on the case consultations and didactic content. They valued the case studies and case-based didactics and learned from each other as well as from the team. Conclusions: The pilot MS Project ECHO warrants further investigation regarding its potential effect on access to MS care delivery for underserved populations.
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Buchanan, Robert J., and Chunfeng Huang. "The Need for Mental Health Care Among Informal Caregivers Assisting People with Multiple Sclerosis." International Journal of MS Care 15, no. 2 (June 1, 2013): 56–64. http://dx.doi.org/10.7224/1537-2073.2012-030.
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The objective of this study was to identify characteristics of informal caregivers and people with multiple sclerosis (MS) receiving assistance that are associated with the caregiver's perceived need for mental health care. Survey data were collected in interviews with 530 caregivers and analyzed using a logistic regression model. We found that older caregiver age significantly decreased the odds of caregivers' perceived need for mental health treatment. Better mental health domains of health-related quality of life among caregivers, as measured by the 8-item Short Form Health Status Survey (SF-8), also were associated with decreased odds of the need for mental health care. In contrast, the caregiver's feeling that providing assistance was emotionally draining or the belief that this assistance threatened the caregiver/care recipient relationship significantly increased the odds of caregivers' needing mental health treatment. Health professionals treating informal caregivers should be sensitive to the impact that providing assistance has on the emotions, relationships, and mental health needs of caregivers.
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Guagenti-Tax, EM, TA DiLorenzo, L. Tenteromano, NG LaRocca, and CR Smith. "Impact of a Comprehensive Long-Term Care Program on Caregivers and Persons with Multiple Sclerosis." International Journal of MS Care 2, no. 1 (March 1, 2000): 23–39. http://dx.doi.org/10.7224/1537-2073-2.1.23.
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Abstract The goal of this project was to evaluate a comprehensive model of long-term care in multiple sclerosis (MS). This model consisted of workshops designed to assist participants cope with caregiving demands; medical day care to provide rehabilitation and group therapy; home visits by a psychotherapist or nurse to assist with practical and psychological issues; and case management and liaison services. Thirty patient-caregiver units receiving treatment were compared with 29 control subjects, with data being collected on 3 occasions over a 2-year period. Repeated measures analysis of variance found that physical functioning declined for MS subjects as indicated by Kurtzke score, Incapacity Status Scale score, and number of hospitalizations. The experimental group reported an increase in perceived cognitive deficits and decreased anxiety. Control subjects reported a greater decline in perceived health than experimental subjects as assessed by the SF-36 general health subscale. All caregivers reported increased overcommitment. Caregivers of controls reported significant decreases in perceived health and that health problems and caregiving activities interfered with social activities. Persons with MS in both groups reported increased satisfaction with caregiver help, while control subjects reported greater satisfaction with the timeliness of help received. These results provide valuable information about effective ways to use and integrate community resources in the provision of long-term care for persons with MS.
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Buchanan, Robert J., Dagmar Radin, and Chunfeng Huang. "Caregiver Burden Among Informal Caregivers Assisting People with Multiple Sclerosis." International Journal of MS Care 13, no. 2 (July 1, 2011): 76–83. http://dx.doi.org/10.7224/1537-2073-13.2.76.
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Multiple sclerosis (MS) burdens not only patients but also their informal or family caregivers. This study was conducted to identify characteristics of caregivers, caregiving, and MS patients receiving informal care that are associated with caregiving burden. Data were collected through a national survey of informal MS caregivers and analyzed using an ordered logistic regression model to identify factors associated with burden. Burden was found to be significantly greater among male caregivers than among female caregivers. Moreover, greater burden was associated with more frequent patient bladder dysfunction, more hours per week spent providing assistance, and greater restriction on the caregiver's ability to perform daily activities because of caregiving responsibilities. A strong association was found between the mental health status of the caregiver and burden. Health professionals should be sensitive to the impact of caregiving on the mental health of MS caregivers. The results of this study suggest that treating patient bladder dysfunction and facilitating respite care may reduce burden and improve the mental health of informal caregivers of people with MS. Future research should identify programs and services designed specifically to reduce burden experienced by male caregivers.
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Asano, Miho, Abby Eitzen, Karli Hawken, Lindsay Delima, and Marcia Finlayson. "Factors Associated with Postrelapse Rehabilitation Use in Multiple Sclerosis." International Journal of MS Care 21, no. 3 (May 1, 2019): 93–99. http://dx.doi.org/10.7224/1537-2073.2017-092.
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Abstract Background: Most people with multiple sclerosis (MS) have periodic and unpredictable relapses as part of their disease course. Relapses often affect functional abilities, resulting in diminished productivity and lower quality of life. Considering the effects, rehabilitation can play an important role in facilitating recovery; yet, the current literature suggests a lack of postrelapse rehabilitation services use. This study aims to document postrelapse rehabilitation services use and estimate the extent to which predisposing characteristics, perceived need, and enabling resources were associated with postrelapse rehabilitation services use in adults with MS. Methods: This cross-sectional study used convenience sampling, and data from 73 adults with MS who recently had a relapse in the United States and Canada were analyzed. Results: A total of 25 participants (34.2%) reported using postrelapse rehabilitation services. The regression model identified three variables associated with postrelapse rehabilitation services use: age (odds ratio [OR], 1.075), self-reported quality of life (considerably affected by the most recent relapse [OR, 5.717]), and presence of helpful health care providers (for obtaining postrelapse rehabilitation services [OR, 5.382]). Conclusions: Most participants experienced a range of symptoms or limitations because of their most recent relapse, affecting their daily activity and quality of life. However, only one-third of the participants reported using postrelapse rehabilitation services, which focused on the improvement of their physical health. Regression modeling revealed that three population characteristics of the Andersen Behavioral Model of Health Services Utilization were associated with postrelapse rehabilitation services use.
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Senders, Angela, Alena Borgatti, Douglas Hanes, and Lynne Shinto. "Association Between Pain and Mindfulness in Multiple Sclerosis." International Journal of MS Care 20, no. 1 (January 1, 2018): 28–34. http://dx.doi.org/10.7224/1537-2073.2016-076.
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Abstract Background: Chronic pain is a common symptom in people with multiple sclerosis (MS) and often requires a multimodal approach to care. The practice of mindfulness has been shown to decrease the experience of pain in other conditions, yet little is known about the relationship between mindfulness and pain in people with MS. The objective of this study was to evaluate the association between pain interference and trait mindfulness in people with MS. Methods: In this cross-sectional survey, 132 people with any type of MS completed the Patient-Reported Outcomes Measurement Information System Pain Interference scale and the Five Facet Mindfulness Questionnaire. Linear regression was used to test the association between pain and mindfulness while adjusting for demographic and MS-related characteristics. Results: The relationship between pain and mindfulness was clinically meaningful and highly significant (t = −5.52, P < .0001). For every 18-point increase in mindfulness scores, pain interference scores are expected to decrease by 3.96 (95% CI, −2.52 to −5.40) points (β = −0.22, P < .0001). The adjusted model, including age, type of MS, the interaction between mindfulness and age, and the interaction between mindfulness and MS type, explains 26% of the variability in pain interference scores (R2 = 0.26). Conclusions: These results suggest a clinically significant association between mindfulness and pain interference in MS and support further exploration of mindfulness-based interventions in the management of MS-related pain.
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Paraska, Karen. "Relationship Between Expanded Health Belief Model Variables and Mammography Screening Adherence in Women with Multiple Sclerosis." International Journal of MS Care 14, no. 3 (October 1, 2012): 142–47. http://dx.doi.org/10.7224/1537-2073-14.3.142.
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People with disabilities often find it more difficult to access health-care services than the general population, further jeopardizing their health and well-being. The purpose of this descriptive pilot study was to explore the relationship between variables of the Expanded Health Belief Model (EHBM) and adherence to mammography screening in a sample of homebound women with MS after completion of a National Multiple Sclerosis Society (NMSS) intervention, known as the “Home-Based Health Maintenance Program for Women with MS,” that was conducted in Allegheny County, Pennsylvania. The intervention was conducted in the patients' homes and included education of the women and their partners on risk factors for breast cancer and instruction in breast examination techniques. The patients were also helped to make appointments for mammograms. This study derived its sample from the intervention program and used data on adherence recorded by the NMSS. After completion of the intervention, telephone interviews were conducted with women who met the inclusion criteria (N = 11). Descriptive statistics indicate that adherence can be successfully described using variables of the EHBM, including perceived susceptibility, perceived severity, perceived benefits, and self-efficacy. The instruments chosen for the research were well tolerated, useful, and efficient to administer and allowed for immediate assessment.
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Walker, Lisa A. S., Courtney Gardner, Mark S. Freedman, Heather MacLean, Carolina Rush, and Marjorie Bowman. "Research-to-Practice Gaps in Multiple Sclerosis Care for Patients with Subjective Cognitive, Mental Health, and Psychosocial Concerns in a Canadian Center." International Journal of MS Care 21, no. 6 (November 1, 2019): 243–48. http://dx.doi.org/10.7224/1537-2073.2017-090.
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Abstract Background: People with multiple sclerosis (MS) are at increased risk for cognitive impairment, mental health concerns, and psychosocial issues, which can negatively affect disease outcomes and quality of life. Current MS care guidelines recommend integrated interdisciplinary services to address these concerns; however, issues can be overlooked during routine care. To date, there is inadequate research on how often these issues are identified and addressed during routine MS care. Methods: One hundred medical records were randomly selected and reviewed (55 relapsing-remitting MS, 17 secondary progressive MS, 8 primary progressive MS, and 20 other or subtype not indicated). All visits to, and contacts with (ie, telephone, e-mail), an MS clinic over 1 year were included in the analysis to determine the proportion of patients presenting with cognitive, mental health, and psychosocial concerns and the proportion of patients offered associated services. Results: Of the 25 patients with at least one identified concern, treatment recommendations occurred for 13 (52%). Rates of identification of cognitive, mental health, and psychosocial concerns in standard clinical practice were significantly lower than the identified prevalence in epidemiologic studies. Demographic factors had no bearing on who was offered treatment. Patients with concerns access MS clinic services more often than those without. Conclusions: Discrepancies between reported and expected frequencies may be due to overreliance on patient self-disclosure and concerns by the health care team that inadequate resources are available to address issues. An interdisciplinary team model may help address these issues.
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Tzitzika, Moira, Efthymios Lampridis, and Dimitris Kalamaras. "Relational Satisfaction of Spousal/Partner Informal Caregivers of People with Multiple Sclerosis." International Journal of MS Care 22, no. 2 (March 1, 2020): 60–66. http://dx.doi.org/10.7224/1537-2073.2019-003.
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Abstract Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction).
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Browne, Catherine, Maria Kehoe, and Nancy Salmon. "How Beliefs About Bladder Dysfunction Among Health-Care Professionals Influence Clinical Practice Development." International Journal of MS Care 19, no. 4 (July 1, 2017): 191–98. http://dx.doi.org/10.7224/1537-2073.2016-006.
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Background: Bladder dysfunction can affect up to 75% of people with multiple sclerosis (MS) on several important life domains. It is a multifaceted problem that remains underdiagnosed by health-care professionals. The aims of this study were to understand the perceptions of Irish health-care professionals regarding bladder dysfunction and to explore current service provision for people with MS. Methods: Two focus groups, three dyadic interviews, and one semistructured interview with 14 health-care professionals lasting up to 90 minutes were audio-recorded. Participants included eight physiotherapists, two occupational therapists, three nurses, and one clinical case manager from acute and community settings. Results: Thematic analysis of transcripts yielded two key themes. The first theme involves the underlying beliefs of health-care professionals, their clinical practice, and experiential knowledge in the model of clinical practice development in relation to bladder management. The second theme addresses the pivotal points in this model where change can be implemented to optimize bladder management. The first element of change encompasses the interaction between clinical practice and experiential knowledge of health-care professionals. The second element of change incorporates how acknowledgment of individual beliefs of health-care professionals can further inform clinical practice and experiential knowledge. Conclusions: These findings suggest that health-care professionals need to be aware of their beliefs in relation to bladder dysfunction. Examining these beliefs may influence how people with MS access health service provision for this disabling symptom. This type of reflexive practice may facilitate changes to existing perceptions and reduce the reluctance to discuss bladder symptoms.
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B. Barker, Alex, Roshan das Nair, Nadina B. Lincoln, and Nigel Hunt. "Social identity in people with multiple sclerosis: a meta-synthesis of qualitative research." Social Care and Neurodisability 5, no. 4 (November 4, 2014): 256–67. http://dx.doi.org/10.1108/scn-05-2014-0009.
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Purpose – Many aspects of the self are lost as a consequence of having multiple sclerosis (MS). A person's identity can be altered by negative self-concepts, which are associated with poor psychological wellbeing and can lead individuals to reconstruct their sense of self. The Social Identity Model of Identity Change argues that previously established identities form a basis of continued social support, by providing grounding and connectedness to others to facilitate the establishment of new identities. Family support is a salient factor in adjustment to MS and may enable the establishment of new identities. The purpose of this paper is to investigate identity reconstruction following a diagnosis of MS. Design/methodology/approach – A meta-synthesis of the qualitative literature was conducted to examine the relationship between identity change and family identity of people with MS and other family members. Findings – In all, 16 studies were identified that examined identity change and the family following a diagnosis of MS. Coping strategies used by people with MS and their wider family groups, affect the reconstruction of people's identity and the adjustment to MS. Receiving support from the family whilst a new identity is constructed can buffer against the negative effects of identity loss. Practical implications – The family base is strengthened if MS-related problems in daily life are adapted into the individual and family identity using positive coping styles. Originality/value – This review provides an interpretation and explanation for results of previous qualitative studies in this area.
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Wollin, Judy Ann, Nancy Spencer, Elizabeth McDonald, Gary Fulcher, Maureen Bourne, and Rex D. Simmons. "Longitudinal Changes in Quality of Life and Related Psychosocial Variables in Australians with Multiple Sclerosis." International Journal of MS Care 15, no. 2 (June 1, 2013): 90–97. http://dx.doi.org/10.7224/1537-2073.2012-032.
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This study explored changes in quality of life (QOL) and psychosocial variables in a large cohort of people with multiple sclerosis (MS). A total of 1287 Australians with MS were administered self-report questionnaires at baseline and 24 months later to examine the impact of disease severity and duration, perceived stress, self-efficacy, depression, and social support on QOL and self-care. Over the 2-year survey period, MS remained stable for 70% of respondents. Disease severity correlated with social support at baseline but not at 24 months, when the only significant correlation with disease severity was that of the World Health Organization Quality of Life–100 instrument (WHOQOL-100) domain of Level of Independence. Although QOL improved across the WHOQOL-100 domains Physical, Psychological, Level of Independence, Social Relationships, and Environment, decreases were found in the WHOQOL-100 facet overall QOL and well-being as well as self-efficacy over the same time period. Hierarchical multiple regression was used to assess the utility of four control measures. MS disease severity and MS disease duration were entered at Step 1, explaining 16.1% of the variance in QOL. After entry of perceived stress, self-efficacy, social support, and the Depression, Anxiety and Stress Scale–21 (DASS-21) at Step 2, the total variance explained by the model as a whole was 55.8% (F6,1028 = 216.495, P < .001). Thus, even in the presence of stable disease and improvement in some WHOQOL-100 domains, overall QOL and self-efficacy had decreased at 2 years after the collection of baseline data. Loss of self-efficacy, increased stress, and depression are key factors in reduced QOL in people with MS.
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Foley, John F., and Anne M. Dunne. "Successful Management of a Neurology Infusion Practice." International Journal of MS Care 13, no. 2 (July 1, 2011): 95–104. http://dx.doi.org/10.7224/1537-2073-13.2.95.
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The increasing use of infusible biologic therapies, including the novel monoclonal antibody natalizumab for the treatment of relapsing forms of multiple sclerosis, has elicited much interest among neurologists in the provision of in-office infusions for their patients. An in-office infusion center may offer neurologists a means to provide integrated care for their patients in a familiar and supportive environment. This setting is especially convenient for chronically ill patients, allowing them to receive high-quality care under the direct supervision of their neurologist and facility staff. By administering infusible treatments in a neurology practice rather than referring patients to a hospital or oncology/hematology-based infusion center, the primary neurologist can more closely monitor clinical outcomes, treatment adherence, and the occurrence of adverse effects. In addition, there is greater opportunity for patient interaction and education, which can strengthen relationships with clinical caregivers. This model is also applicable to multispecialty or hospital-based neurology groups desiring to integrate neurology infusion services. In this article, we discuss overall management strategies; staffing and scheduling issues; general coding, billing, and reimbursement methodologies; and additional financial considerations.
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Kuspinar, Ayse, Ana Maria Rodriguez, and Nancy E. Mayo. "The effects of clinical interventions on health-related quality of life in multiple sclerosis: a meta-analysis." Multiple Sclerosis Journal 18, no. 12 (April 27, 2012): 1686–704. http://dx.doi.org/10.1177/1352458512445201.
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The objective is to estimate the extent to which existing health care interventions designed specifically to target health-related quality of life (HRQL) in persons with multiple sclerosis (MS) achieve this aim. The structured literature search was conducted using multiple electronic databases including Ovid MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature and the Cochrane Central Register of Controlled Trial, for the years 1960 to 2011. The methodological quality of selected randomized controlled trials (RCTs) was assessed using the Cochrane Collaboration’s recommended domain-based method. Effect size (ES) was used to measure the effect of each intervention on HRQL. The studies were combined using a random-effects model to account for inter-study variation. Heterogeneity was tested for using the I-test and publication bias was assessed using funnel plots and the Egger weighted regression statistic. Thirty-nine RCTs met the criteria, all with acceptable methodological quality. Six major types of interventions were identified through the search. The smallest effect was observed for self-management and complementary and alternative medicine (ES=0.2), followed by medication (ES=0.3) then cognitive training and exercise (ES=0.4), and psychological interventions to improve mood (ES=0.7). The magnitude of positive effect on HRQL varied between the different types of interventions. The extent to which interventions are able to improve HRQL depends on delivering a potent intervention to those persons who have the potential to benefit.
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Todd, Ana, and Alexa Stuifbergen. "Barriers and Facilitators Related to Breast Cancer Screening." International Journal of MS Care 13, no. 2 (July 1, 2011): 49–56. http://dx.doi.org/10.7224/1537-2073-13.2.49.
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Recent literature indicates that women with various types of chronic disabling conditions are less likely to participate in routine breast cancer screening than those without disabling conditions. The purpose of this study was to identify barriers and facilitators related to breast cancer screening among women with multiple sclerosis (MS). A total of 36 women with MS, whose mean age was 55 years, participated in a semistructured interview in a private setting. The interviews were audiotaped and transcribed verbatim. The interview questions, informed by the Health Belief Model, addressed knowledge, experience, barriers, and facilitators related to breast cancer screening. Qualitative descriptive techniques were used to analyze the data. About 94% of the women in the sample were white, 67% were married, 47% had at least a bachelor's degree, and 31% were unemployed because of their disability. The results showed that 70% of these women had received annual mammograms and 50% had performed monthly breast self-examinations. Of the women who had not received mammograms, most (80%) had mobility limitations. Some of the women in this study described various environmental and intrapersonal barriers to breast cancer screening. Among these were barriers related to transportation, difficulty in positioning for the examination, health-care provider attitudes, not remembering, fear, discomfort, and “having enough to handle.” Facilitators included annual reminders and helpful health-care providers.
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Mealy, Maureen A., Audra Boscoe, Jaime Caro, and Michael Levy. "Assessment of Patients with Neuromyelitis Optica Spectrum Disorder Using the EQ-5D." International Journal of MS Care 21, no. 3 (May 1, 2019): 129–34. http://dx.doi.org/10.7224/1537-2073.2017-076.
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Abstract Background: Neuromyelitis optica spectrum disorder (NMOSD) is a rare autoimmune disease characterized by unpredictable attacks of the optic nerves and spinal cord that cause neurologic deficits, including weakness, numbness, bowel/bladder dysfunction, and pain and reduced vision and can ultimately lead to blindness and paralysis. We assessed the effects of NMOSD on quality of life. Methods: Adult patients with NMOSD treated at a US academic neurology clinic completed the EQ-5D and several other measures of functional status and quality of life. The EQ-5D scores and correlations across measures were evaluated, and scores were compared with those of patients with multiple sclerosis and US norms. Results: Twenty-one patients (90% women; mean age, 42.8 years; mean disease duration, 8.2 years) were included. The mean EQ-5D score was 0.74. Most patients reported at least some problems with mobility, pain/discomfort, usual activities, and/or anxiety/depression. Greater proportions of patients reported moderate or severe problems with mobility and pain/discomfort than they did with self-care, usual activities, or anxiety/depression. In a multivariate model, only the Brief Pain Inventory was a significant independent predictor of overall EQ-5D score. Conclusions: Neuromyelitis optica spectrum disorder has a substantial effect on multiple domains of quality of life. Pain seems to be among the primary drivers of the EQ-5D scores in NMOSD.
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Merasto, Merja, Annina Kangas-Niemi, and Eveliina Kivinen. "The Benefits of Functioning as a Mentor for Nurse Students in the Republic of Kazakhstan - Discussion Paper Based on Current Literature." Journal of Health Development 1, no. 41 (2021): 22–30. http://dx.doi.org/10.32921/2225-9929-2021-1-41-22-30.
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The aim of the study: The aim of this discussion paper is to identify and provide an overview of the benefits of mentorship for the mentor of nurse students and describe the facilitators and barriers the nurse mentors encounter in their mentorship activities during nurse students' clinical practice. Methods: The databases CINAHL, Medline, Pub Med and Science Direct from 2016-2021 were searched. The studies were screened by title, abstract and full text. 25 studies met the inclusion criteria. Results: Eight key themes emerged from the included studies. These theme areas were as follows; 1) being a role model, 2) recognition of role value and esteem, 3) keeping up to date, 4) student attributes, 5) colleague attributes, 6) time challenges, 7) location challenges and 8) lack of financial remuneration. The findings revealed nurse mentors experiencing knowledge transfer and facilitating students’ learning as major benefits of mentoring. Being a role model was reported in many of the selected articles. The mentoring role promoted the overall clinical quality, patient safety, and additionally made nurse mentors feel valued. Overall “lack of time” was referred several times as a barrier and frustrating element in the mentor’s work. Conclusions: Mentors have an important role and should be acknowledged as one of the cornerstones of quality nursing education. The findings highlight the significant benefits of mentoring from the mentor’s perspective. In the Republic of Kazakhstan, the goal is to develop the mentoring of nurse students and to train more competent mentors in the coming years. It is important to point out that mentoring has multiple benefits for the mentor, the student, the work community, and the health care organization as well as for nursing education. Research in these areas is important when developing mentoring nationwide. Keywords: education, Kazakhstan, mentor, mentoring, nurses, students, nursing.
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Abbatemarco, Justin R., Jeffrey A. Cohen, Belinda L. Udeh, Sunakshi Bassi, and Mary R. Rensel. "Multiple Sclerosis Wellness Shared Medical Appointment Model: A Pilot Study." International Journal of MS Care, April 8, 2021. http://dx.doi.org/10.7224/1537-2073.2020-044.
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Abstract Background: Shared medical appointments (SMAs) are group medical visits combining medical care and patient education. We examined the impact of a wellness-focused pilot SMA in a large multiple sclerosis (MS) clinic. Methods: We reviewed data on all patients who participated in the SMA from January 2016 through June 2019. Data were collected 12 months pre/post SMA; included demographics, body mass index, patient-reported outcomes, and health care utilization; and were compared using Wilcoxon rank sum test. Results: Fifty adult patients (mean ± SD age, 50.1 ± 12.3 years) attended at least one MS wellness SMA. Most patients had private insurance (50%), and 26% had Medicaid coverage. The most common comorbidity was depression/anxiety (44%). Pre/post SMA outcomes showed a small but significant reduction in body mass index (30.2 ± 7.3 vs 28.8 ± 7.1, P = .03), and Patient Health Questionnaire-9 scores decreased from 7.3 ± 5.5 to 5.1 ± 5.6 (P = .001). The number of emergency department visits decreased from 13 to two (P = .0005), whereas follow-up visits increased with an attendees’ primary care provider from 19 to 41 (P < .001), physical therapist from 15 to 27 (P = .004), and psychologist from six to 19 (P = .003). Conclusions: This pilot MS wellness SMA was associated with improved physical and psychological outcomes. There was increased, lower-cost health care utilization with reduced acute, high-cost health care utilization, suggesting that SMAs may be a cost-effective and beneficial method in caring for patients with MS.
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Punshon, Geoffrey, Jo Sopala, Guy Hannan, Megan Roberts, Karen Vernon, Annabella Pearce, and Alison Leary. "Modelling the Multiple Sclerosis Specialist Nurse Workforce by Determination of Optimum Caseloads in the United Kingdom." International Journal of MS Care, January 13, 2020, 0000. http://dx.doi.org/10.7224/1537-2073.2019-058.
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Abstract Background: It is estimated that there are over 100,000 people in the UK who have multiple sclerosis. Access to a specialist nurse service improves patient experience and outcomes. The aim of this study was to publish a new, robust validated standard optimising the UK nursing workforce model. Methods: Existing national data and specific workload and service data were collected from 163 multiple sclerosis specialist nurses who completed a questionnaire to collect information on activity and complexity of work both done and left undone. Results: Data was received from all of the UK. Twenty-nine percent of respondents were specialist nurses in the field for three years or less. Unpaid overtime was regularly carried out by 83.4% of respondents. The multiple sclerosis specialist nurse was involved in all areas of the patient journey. Areas of work left undone were psychological interventions, physical assessment, social interventions/benefits and recommending or prescribing medication. Conclusions: The current recommended caseload of 358 per whole time equivalent appears to be too high with a considerable amount of work left undone, particularly psychosocial care. Factors such as travel time, complexity of caseload, changing drug therapies and societal issues such as the benefits system contributed to driving demand/workload.
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Bertapelli, Fabio, Stephanie L. Silveira, Stamatis Agiovlasitis, and Robert W. Motl. "Development and Cross-Validation of a Simple Model to Estimate Percent Body Fat in Persons with Multiple Sclerosis." International Journal of MS Care, January 12, 2021. http://dx.doi.org/10.7224/1537-2073.2020-034.
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Abstract Background: Persons with multiple sclerosis (MS) have higher body composition variability compared with the general population. Monitoring body composition requires accurate methods for estimating percent body fat (%BF). We developed and cross-validated an equation for estimating %BF from body mass index (BMI) and sex in persons with MS. Methods: Seventy-seven adults with MS represented the sample for the equation development. A separate sample of 33 adults with MS permitted the equation cross-validation. Dual-energy xray absorptiometry (DXA) provided the criterion %BF. Results: The model including BMI and sex (mean ± SD age: women, 49.2 ± 8.8 years; men, 48.6 ± 9.8 years) had high predictive ability for estimating %BF (P < .001, R2 = 0.77, standard error of estimate = 4.06%). Age, MS type, Patient-Determined Disease Steps score, and MS duration did not improve the model. The equation was %BF = 3.168 + (0.895 × BMI) – (10.191 × sex); sex, 0 = woman; 1 = man. The equation was cross-validated in the separate sample (age: women, 48.4 ± 9.4 years; men, 43.8 ± 15.4 years) based on high accuracy as indicated by strong association (r = 0.89, P < .001), nonsignificant difference (mean: 0.2%, P > .05), small absolute error (mean: 2.7%), root mean square error (3.5%), and small differences and no bias in Bland-Altman analysis (mean difference: 0.2%, 95% CI: −6.98 to 6.55, rs = −0.07, P = .702) between DXA-determined and equation-estimated %BF. Conclusions: Health care providers can use this developed and cross-validated equation for estimating adiposity in persons with MS when DXA is unavailable.