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Multiple sclerosis

The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

BACKGROUND: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators.

OBJECTIVE: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general.

Thu, 07/20/2017 - 15:18

Anxiety and depressive symptoms in caregivers of multiple sclerosis patients: The role of information processing speed impairment

Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.

Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.

Thu, 07/20/2017 - 15:18

The needs of carers of people with multiple sclerosis: a literature review

People with multiple sclerosis depend heavily upon their families and other informal carers as they receive limited support from health-care professionals or health-care services, Adopting the carer role results in a life-changing experience, which may bring rewards and challenges to the carer. This paper reviews the research addressing the experiences of carers of people with multiple sclerosis published between 2002 and 2007 building upon an earlier review. The literature suggests that carers have needs across various domains and that spouses/partners have particular needs.

Thu, 07/20/2017 - 15:18

In sickness and in health: experience of caring for a spouse with MS

Background People are not expected to die from multiple sclerosis although, as the condition progresses over a period of time, some people become increasingly disabled and will require assistance with all activities of daily living. Their partners invariably carry out these tasks. Objective To gain a deeper understanding of the experiences of the partner living with and caring for a spouse disabled by multiple sclerosis.

Thu, 07/20/2017 - 15:16

Burden and quality of life in caregivers of persons with multiple sclerosis

Multiple sclerosis (MS) is the second most common cause of disability among nervous system diseases. This disease causes reduced quality of life of patients and those caring for them. Quality of life (QoL) measures consist of at least three broad domains: physical, mental and social. In the field of medicine, researchers have often used the concept of health-related quality of life, which specifically focuses on the impact of an illness and/or treatment on patients’ perception of their status of health and on subjective well-being or satisfaction with life.

Thu, 07/20/2017 - 15:16

Change of identity: the psychological and emotional impact of caring for someone with multiple sclerosis

The diagnosis of a chronic progressive condition such as multiple sclerosis (MS) can impact on many aspects of daily life. Living with, and caring for, an individual with such a condition is likely to have emotional and psychological consequences. We carried out semi‐structured interviews with nine partners and analysed the interview transcripts using grounded theory (Strauss & Corbin, 1998), the phase presented in this article formed part of a larger overall study that explored the impact of living with MS for partners and a family.

Thu, 07/20/2017 - 15:14

A forgotten aspect of the NICE reference case : an observational study of the health related quality of life impact on caregivers of people with multiple sclerosis

BACKGROUND: There are few published health technology assessments that have included the impact of a disease or treatment on caregivers' health related quality of life (HRQL). The objectives of this study were to explore the overall HRQL of caregivers of people with multiple sclerosis compared to matched controls, and more specifically explore the impact of different levels of functioning in people with MS on caregivers' HRQL scores. METHODS: A cross sectional observational study conducted as an online survey was undertaken in the UK.

Thu, 07/20/2017 - 15:11

Satisfaction with services among people with progressive neurological illnesses and their carers in Australia

The current study investigated the types of support networks and services accessed by people with progressive neurological illness, as well as the assessment of the usefulness of these services. The participants were 25 people with multiple sclerosis, 15 people with motor neurone disease, 23 people with Parkinson's disease, and six people with Huntington's disease. Twenty-eight professionals who worked with people with these illnesses and 41 carers of people with these illnesses also were interviewed.

Thu, 07/20/2017 - 15:10

Economic deprivation and its effects on subjective wellbeing in families of people with multiple sclerosis

Background: There has been limited research on the role of financial strain on the adjustment of people with multiple sclerosis.

Aims: This study examined the financial costs of MS and the impact of financial strain on the quality of life and adjustment of people with MS and their families.

Methods: Interviews were conducted with 16 health professionals, 26 people with MS and 11 family members of people who have MS.

Thu, 07/20/2017 - 15:09

Health-related quality of life among informal caregivers assisting people with multiple sclerosis

Objective: To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.

Methods: Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.

Thu, 07/20/2017 - 15:09