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Multiple sclerosis

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

Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found t

Thu, 07/20/2017 - 15:09

'Fighting for everything': service experiences of people severely affected by multiple sclerosis

Background No previous research exists specifically exploring the needs of those people severely affected by multiple sclerosis (MS).

Methods Semi-structured interviews were conducted with people identified by the referring health or social care professional as being severely affected by their MS and informal carers, in order to explore their perceptions of their illness and care. The data were analysed for themes using the constant comparative approach.

Thu, 07/20/2017 - 15:09

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