Title:
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Living with multiple sclerosis : an exploration of quality of life, independance and service provision
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This study aimed to explore the experienceso f living with multiple sclerosisi n terms of
quality of life, independencea nd satisfactionw ith health, social care and voluntary
services, from a community psychological perspective.
The research was undertaken in a Northern Locality of England. It was a qualitative
study with elements of action research. Participants included 21 people affected by
multiple sclerosis, seven family members and six health and social care practitioners.
The research used a range of different methods to collect data about the experiences
of living with multiple sclerosis, from different perspectives, within a pragmatic
paradigm. All participants completed a short quality of life questionnaire
(WHOQOL-BREF) and participated in face to face interviews. These data were
enriched by a focus group, a multi disciplinary conference, field observations and
two meetings with the Minister of Care. Questionnaire data were analysed
descriptively and thematic analysis applied to interview, focus group and
observational data.
Data revealed the diverse experiences of living with multiple sclerosis. Most
participants affected by multiple sclerosis reported higher satisfaction with their
quality of life than their health; and in many cases, the participants most physically
affected seems to be the most independent. Relatives and practitioners perceived
people affected by multiple sclerosis to be less satisfied than they did themselves.
Local health and social care services were seen to be reactive rather than proactively
promoting independence and enhancing quality of life. The local Multiple Sclerosis
Society restricted itself to social activities. People affected by multiple sclerosis
revealed barriers within the local community and gaps in existing service provision.
Questionnaire data were deemed to be very superficial and a case was made for
enrichment through the collection of qualitative information. A new model to
promote interdependence while enhancing quality of life of people living with
multiple sclerosis was presented and the role of the scholar activist was discussed.
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