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Book

Multiple sclerosis: an information pack for professional carers

Author:
MULTIPLE SCLEROSIS SOCIETY
Publisher:
Multiple Sclerosis Society
Publication year:
1987
Pagination:
looseleaf folder.
Place of publication:
London
Book

Multiple sclerosis: a personal exploration

Author:
BURNFIELD Alexander
Publisher:
Souvenir Press
Publication year:
1985
Pagination:
190p., bibliog.
Place of publication:
London
Journal article

MS : the cruel paradox

Author:
HEFFERMAN C.
Journal article citation:
Social Work Today, 24.11.88, 1988, pp.18-19.
Publisher:
British Association of Social Workers

Multiple Sclerosis and the role of the social worker with newly diagnosed sufferers.

Journal article

An 8-year telephone support group for home-bound people with multiple sclerosis: adapting therapeutic methods to overcome isolation and immobility

Author:
CECIL Audrey H.
Journal article citation:
Social Work with Groups, 37(2), 2014, pp.129-141.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA

This article explores the dynamics of a long-term telephone support group, over eight years, for individuals with multiple sclerosis (MS) who were patients from the Partners MS Center at Brigham and Women's Hospital in Boston, Massachusetts. MS is a progressive neurological disease that frequently affects mobility and engenders isolation. All of the participants in this group are physically disabled by their disease. The mobility challenges of this population led to the idea of using conference call technology as a treatment modality. Incorporating theory from neurobiology research, this article chronicles the implementation of the group and offers observations about the interplay between individual self-esteem, group participation, and the use of technology in mental health treatment. (Edited publisher abstract)

Journal article

Normative data for the Hospital Anxiety and Depression Scales (HADS) in multiple sclerosis

Authors:
ATKINS Lizzy, NEWBY Gavin, PIMM John
Journal article citation:
Social Care and Neurodisability, 3(4), 2012, pp.172-178.
Publisher:
Emerald

Depression and anxiety are common in individuals with multiple sclerosis (MS). This study aimed to investigate the use of the Hospital Anxiety and Depression Scales (HADS) as a useful tool for measuring anxiety and depression in people with MS who live in the community. Another aim was to provide normative data specific to MS to help in the assessment of anxiety and depression for clinicians and researchers. The study was part of a larger community postal survey investigating the relationship between mood and self-reported cognitive difficulties in MS. A total of 144 individuals with MS in this study completed the HADS. The findings showed that individuals with MS report significantly greater levels of anxiety and depression than a healthy population, with prevalence rates of moderate/severe anxiety of 32.4% and prevalence rates of moderate/severe depression of 12.5%. The HADS had good levels of internal reliability, providing evidence of the suitability of the HADS in this population. Raw scores and percentile equivalents for use with MS patients are reported.

Journal article

Use of the internet by informal caregivers assisting people with multiple sclerosis

Authors:
BUCHANAN Robert J., HUANG Chunfeng, CRUDDEN Adele
Journal article citation:
Journal of Technology in Human Services, 30(2), April 2012, pp.72-93.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA

Multiple sclerosis (MS) is the most common neurological disease disabling younger adults in the United States. About 30% of people with MS in the US require support and assistance at home, with an estimated 80% of that care provided by informal caregivers, usually family members. Previous studies have identified that the internet is used to help informal caregivers provide assistance to people with chronic illness and disability. The aim of this study was to identify characteristics of informal caregivers, caregiving, and people with MS receiving their assistance that are associated with caregiver use of the internet. A sample of 530 informal caregivers assisting people with MS was recruited using the Registry of the North American Research Committee on Multiple Sclerosis (NARCOMS). Factors associated with internet use were identified using a logistic regression model. Duration of MS in the person receiving care and caregiver age predicted lower internet use. More hours per week providing care and higher caregiver educational level increased odds of internet use. The internet can be a low-cost service delivery option to provide education and support to caregivers assisting people with MS.

Journal article

What do people with multiple sclerosis want from an occupational therapy service?

Authors:
PRESTON Jenny, HASLAM Simon, LAMONT Lynn
Journal article citation:
British Journal of Occupational Therapy, 75(6), June 2012, pp.264-270.
Publisher:
College of Occupational Therapists

This study aimed to understand how people with multiple sclerosis (MS) experienced a local occupational therapy service and to identify what they would want from future services. The data for this qualitative programme evaluation were generated through nine focus groups in Scotland, including 30 people with a clinically definite diagnosis of MS (23 women, overall mean age 49 years), 10 partners/carers of people with MS and six occupational therapy staff. The findings fell within four key themes: comprehension of occupational therapy; assessment and interventions; home visits; and levels of support. Although occupational therapy was not initially well understood, this improved with greater use of the service. Nevertheless, significant challenges exist in providing therapeutic programmes that offer meaning and purpose within the lives of people with MS while ensuring flexibility and choice. The authors suggest that there is a possible distinction between what occupational therapists believe people with MS want and what they and their partners/carers do want. People with MS and their partners/carers, therefore, have a meaningful contribution to make and should be involved in the future development of occupational therapy services.

Book Full text available online for free

Ready to work: meeting the employment and career aspirations of people with multiple sclerosis

Authors:
BEVAN Stephen, et al
Publisher:
The Work Foundation
Publication year:
2011
Pagination:
9p.
Place of publication:
London

Multiple sclerosis (MS) affects up to 100,000 people in the UK and 2.5 million worldwide. Due to its unpredictable and fluctuating nature, MS can impact an individual’s quality of life as well as their ability to work. Premature loss of employment by people with MS and their informal carers incurs significant costs to the UK labour market and economy. The working lives of suffers are, on average, cut short by 18 years. The report calls for a coordinated action to reduce the unnecessary burden of the condition on individuals’ lives and the UK economy. Research shows that many people with MS are willing and able to work. However, the fluctuating and unpredictable nature of the condition often makes it difficult for the employers to understand the impact of MS on performance and productivity. Access to flexible working and adjustments of workplace environment, together with appropriate government policies will support individuals with MS to continue fulfilling working lives.

Journal article

Why should my children care?

Author:
DENTON Jay
Journal article citation:
Disability, Pregnancy and Parenthood International, 72, Spring 2011, pp.8-9.
Publisher:
National Centre for Disabled Parents

A single parent with multiple sclerosis discusses the experiences that led to her two children, Josh and Rebekah, receiving Colchester Youth Awards as Young Carers of the Year.

Book Full text available online for free

National audit of services for people with multiple sclerosis 2008

Authors:
WADE Derick, YOUNG Katharine, LOWE Derek
Publisher:
Royal College of Physicians of London
Publication year:
2008
Pagination:
85p.
Place of publication:
London

This organisation audit is being undertaken by the Royal College of Physicians and the MS Trust and aims to assess the implementation of the NICE Clinical Guideline for Multiple Sclerosis (2003) and the relevant parts of the National Service Framework for Long Term Conditions in England and Wales Data will be collected using web-based collection by questionnaire from four sources: Strategic Health Authorities / Regional Offices; Primary Care Trusts / Local Health Boards, Acute Trusts (service providers) and people with MS.  This will enable the experiences and perceptions of the four parties to be compared and contrasted. The results of the audit may be used by your trust to evidence delivery of the Standards for Better Health (Department of Health, 2004) which forms part of the Health Care Commission’s ‘Annual Health Check’.  The results will be provided in a national report; within the report individual site results will remain anonymous.  Retention of local data by sites will allow comparison with national performance. This audit will be repeated and therefore service development can be assessed

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